Calling all Topamax Users (topiramate) [Archive]

Blasterboy

03-06-2006, 02:25 PM

Hi there, I've been on this med now for 4 weeks to treat my post surgery nerve damage to my Intercostal Nerve along the Diaphragm. I adapted to it so well that I skipped the slow titration and was on the 100mg a day dose within 2 weeks. Anyhow it seems to have helped my pain the best out of the spread of this type of meds I've tried, which include Neurotin, Lyrica, Tegrotol and Sodium Valpoarate. I'm even losing weight on the Topamax; it seems too good to be true. The only bad side effect if the inability to do sums in my head.

I've cut my dose of Klonpin from 3.5mg a day to 2mg also and hope to start reducing the Oxy. I'm also wondering if it's possible to go on a higher dose that 100mg of Tomopax. Have many others been on much more?

I'm seeing my PM doc on Wednesday and would like to request a higher dose, so I'm really interested in everyone’s stories and experiences of Topomax. Please post them.

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curiousforever

03-06-2006, 04:42 PM

Interesting.

I'm glad it is working for you. I have peripheral neuropathy and was put on that. It actually made the nerve pain worse - and it made my feet feel like bees were stinging them (pins and needles - but very painful).

The 2nd neuro said that it makes nerve pain worse.

friendly_one

03-06-2006, 04:57 PM

Hi Blaster...I was only on it for 2 weeks a few years ago. I'm one of those patients that needs to know everything about a med when I start one. So, I looked it up on the Internet, good thing I did. It can cause kidney stones, which is my problem!! I don't need any help in that department, thank you! So, I went off of it ASAP. My experience was only brief. Sorry I wasn't much help.

Blasterboy

03-06-2006, 06:26 PM

Anyone been on a dose over 100mg?

April414

03-06-2006, 11:55 PM

I can't remember what my dose was, with hpw long ago it's been plus my fibro fog plus the way my poor brain has had to deal with pain meds. I was on it for about 2 years. I took it for migraine prevention and it helped a lot. I devoloped the pins and needles in my hands and feet and in/on the top of my head, also the way my mind was acting/reacting I thought maybe I had had a small stroke. My dr. told me that Topamax can affect some peoples minds that way. The pain from the pins and needles made me stop taking it and now take Gabitril instead, for about a year and so far no problems.

Drewtn

03-07-2006, 11:45 AM

I was on a couple hundred mgs a day. The higher the dose the worse the side effects. Eventually the side effects were worse than the benefit. I had to have my levels tested every couple months to make sure it wasn’t causing damage.
I couldn’t drink any carbonation. All food tasted terrible. I lost 50 lbs while on it. My extremities went numb all the time. I couldn’t hold the phone for more than 5 minutes and my whole hand was numb and I had pins and needles. I couldn’t stand on a ladder because my feet would go numb. I couldn’t stand in one place for more than 20 minutes or my legs would go numb and tingle. I had major loss of words and thought. There were so many times I would be in mid sentence and couldn’t find the word I was looking for. (Even easy words)
Honestly there is no way I would go back on that medicine.

I have heard of many other side effects too. Much more negative than mine. I would suggest doing a search on the negative side effects.
Good luck,
Drew

galpster

03-07-2006, 05:07 PM

Sunnycal

03-07-2006, 11:18 PM

My husband (who has RSD) has switched from Lyrica to Topamax (150 mg) a day. He has been on the full dose since Saturday. He is sleepy all the time, and seems "out of it". He says that he is light-headed, but is not reporting a pins and needles feeling. He switched because the Lyrica was causing hand tremors such that he could barely put something in his wallet. He is not eating much, so I guess it really does decrease your appetite. Hopefully the sleepiness will go away soon.
Sunny

Blasterboy

03-08-2006, 04:35 AM

Sunny, did he Titrate up to the 150 dose?

Blasterboy

03-08-2006, 10:41 AM

PM doc, just upped me to 150mg a day 3 x 50mg doses. He said it's possible to take up to 400mg a day! Bugger that! I did request that if he thought it was ok that I up to 200mg if I get on with this increase. I asked that as I'm hoping this will help lower my Klonpin dose and pain levels of cause!

curiousforever

03-08-2006, 10:50 AM

I think I was taking 100 twice a day.

I surely hope it works for you - some people it really helps and others it just doesn't work out too well.

davetheplantman

03-08-2006, 11:24 AM

I have been taking topamax for 6 months now. I take 400mg a day, 200 mg twice daily with absolutely no side effects. This drug takes a while to get used to, it can take months for the body and the brain to sink it in as my doc stated. As for the kidney stones, it is a increased risk if you do not watch your water intake and make sure you do not become dehydrated. There are risks with all medications. Period. People will complain about any drug if they have had a bad experience with it, but if they have had any good experience with it, watch out, miracle drug. This is my drug of choice, at least for now. It works so much better, much better pain relief than oxy, morphine, vicodine, whatever, for my condition only which is nerve pain related to disk damage and radiular problems in the legs.

Just take it slow, give it time, lots of time, months if need be. Remember that this drug is also used as a mood stabilizer so it can be a bit difficult sometimes . Do not give up, the side effects generally go away as you reach the highest dose, yes, highest dose where you should be, and when it finallly all starts working, if it does, imagine how wonderful that might actually be to have some pain relief without narcotics. Drink lots of water, listen to your doc and pharmacist.

I still have horrible pain, I still have ups and downs, have rescue medications, celebrex, narcotics, in the case of emergencies, you know how it goes, just take this one slow and see if it might work for you.

Blasterboy

03-08-2006, 11:45 AM

davetheplantman, do you take any other meds to treat the nerve pain on top of this?

curiousforever

03-08-2006, 12:57 PM

davetheplantman

03-08-2006, 03:50 PM

Blasterguy: I tried neurontin with no great effect except weight gain and feeling drunk in the morning, amitriptylin which is my nightmare drug of choice, talk about a disaster for me....don't get me started:)

Usually Celebrex works enough to handle pain when the topamax does not, but not always. Hope you are doing well. :)

Blasterboy

03-08-2006, 04:39 PM

interesting that Celebrex works on Nerve pain, I tried that early on before uping the anti on the opiates and it didn't seem to help. I might try it again though for a back problem soon and I guess it could have some minor effort on the nertve pain too. I often take Acetam' I think that's a great painkiller on top of the Oxy and I am a big believer in Ultram and so is my PM doc, he believes it is the only drug in this class that has proven properties for nerve pain treatment. I've found that Oxy on it's own is not too effective and Ultram on it's own not too effective, but mix the two and it really helps me, when things are bad!

davetheplantman

03-08-2006, 07:34 PM

I forgot about ultram. It did work for a while, along with other opiates, but I was soon maxing out at 400 mg. People with nerve pain often don't respond well to opiates as you well know and require larger and larger doses of medications. I just hated it. We are the lucky ones for whom the anti seazure drugs work you do realize. I remember crawling into bed on sunny afternoons after the car accident and taking nyquil, trying to go to sleep just to avoid being awake because the pain was to great, endless days with no clear meaning. After reading some of your other posts, and some of the other drugs you have been on, perhaps in time this one might help you a bit.

Hey, type crazy meds into google and see what you come up with. Research these drugs and learn, they are quite fascinating.

Blasterboy

03-10-2006, 05:26 AM

Awesome read, thanks for the advice Dave, I really enjoyed that. Actually I'm Adult ADD and am been treated by none medicinal methods, but I think Temporal Lobe problems can be an issue for ADD people and so maybe that's another reason I'm getting on so well with the Topomax. I must say though that since I upped my dose from 100mg to 150mg I've gone a little stupid again, still I know it will settle again soon.

I'm so pleased that I've finally found a drug that is helping the pain so much and I really am hopeful of getting of the Klonpin. I really don't wont to be a long term Benzo user and since I've only been on them 4 months and am now down to 1.5mg a day from 3.5mg a day since I started Topamax, I've good reason to be hopeful. :) Even if I can get down to 0.5mg a day in the next month that will be great!

Sunnycal

03-10-2006, 11:19 PM

Blaster boy, sorry I didn't get back to this thread sooner. I'm glad it is working for you. My husband took 1/2 Lyrica and 1/2 Topamax for a week and then went on the full dose of Topamax the second week. That is faster than he has titrated up to other meds. He is still very sleepy and not eating much at all. (I realize that Topomax decreases your appetite, but this is ridiculous) For instance today, he had some yogurt and a banana at 2:00 when he woke up, and is now having a sandwich (7:00 PM) I think part of his light-headedness could be lack of food, too. He seems to be in slow motion, too. Someone said it could take a month for the side effects to wear off. If he went on it too fast, will it just take longer, or does he have to start over?
Sunny

Blasterboy

03-11-2006, 05:39 AM

apparently it's very individual how we react to these medication, but surely the 4 weeks titration up to 100mg is there for a reason. I only got up to it in two weeks because I wasn't feeling after two the early doses at all (or bearly at least) and so I easily went up to the 100mg.) Generally I've found that I've titrated onto the anti seisure meds very easily, I've tried about 4 and had little problem with any of them as far as titratration and initial side effects go, but many people have awful and varied side effects, so it's far from my place to advice another on what to do with regards their titration, espesically given that he was mixing his dose on his upward titration, that way out of my league.

gingerweezie

03-11-2006, 10:14 AM

Davetheplantman's got IT right about Topamax. You've got to give it time. I've been on it for over a year now and am taking 150 mg at bedtime and am hoping to increase that again this week. I take it for Migraines. I had the DIPPY and forgetfulness at the beginning and really everytime they increased my dose but not anymore. I'm blonde already so I don't need any help in that department. :) If I didn't take Topamax I wouldn't get out of bed in the morning. People are always going to post about the bad experiences but not always about the good ones. Carbonated beverages still taste yucky but that's ok I didn't need them anyway. Give it a try and I REALLY hope you find something that works for you. God bless. :wave:

Blasterboy

03-12-2006, 08:12 AM

I've just start to get the pins and needles in my feet and hands since I upped to 150mg over the past few days. It's nothing I can't handle for the grace of the pain relief, but it a weird feeling!

lindiana53

04-05-2006, 04:49 PM

Interesting discussion. I was on Topamax to control cravings caused by Cymbalta, an antidepressant. It didn't help that much, and at 100mg a day, the Top made me search for words--bad in my line of work. I went off of it. I have two pinched nerves in my back that cause pain when I stand or walk. I didn't get any pain meds from my internist, so after realizing that Tylenol and aspirin products don't seem to work on this type of pain, I decided to go back on the Topamax after a discussion with my P-doc. Interestingly, I don't have any side effects this time, and it's been a month. It may be helping a little. I'm interested to know how many people are using it for back pain, at what dose, and to what result.

Blasterboy

04-05-2006, 04:57 PM

I'm up to 400mg a day now and not having much of a problem with side effects, just a little bit of "post pins and needles" in the pads of my feet. All soda tastes like crap! Anyhow I did have some secondary pain in my lower back that has gone since I've been on this higher dose, maybe it's been related, I guess it's possible; but the Topamax is mainly to treat the post surgery nerve damage on my Intercoastal nerve around my diaphram on my left ribcage.

BlueSteam

04-05-2006, 08:02 PM

I had just finished posting about my own problem about my neck pain and decided to read this one. I've got nerve problems in my neck and lower back. It seems to me that the dr should have tried topamax with me a long time ago. I will mention it to the pain dr I see on Fri. I've been put on so many other drugs and I allready feel like I don't know if I'm coming or going. Now, I feel like there is some hope out there. :D

VA-GAL

04-06-2006, 10:14 AM

I take Topamax and I was like you and never had a problem titrating up on it. I was able to move up very quickly with very little side effects. I am presently taking 100mgs twice a day. I take 100mgs in the morning and 100mgs at bedtime. I have little to no side effects. The only thing I have noticed is the food tasting bad side effect. And really the only thing I don"t like anymore is most sodas, cantelope, and some other weird things. Other than that the dopey side effects have all but gone. I have been on it for a while now. I too take it for nerve pain. I did not think it was doing much for me until I tried going off of it. Then I noticed a big difference in my pain levels and asked to go back on it. I have facial nerve damage from a previous surgery. So it does seem to keep the pain in check for the most part. In fact, I think I could probably go up on the dose again. I don't know if there is a ceiling dose on this med, I am sure there is. But I know most people have a lot of trouble with this med. I consider myself lucky to be able to take it.

Good luck with it. I am glad it is working for you too.

VA-gal

Blasterboy

04-06-2006, 10:24 AM

I think 400mg a day is the ceiling for nerve pain, although I was thinking of asking my PM doc if I could trial past this as I've adapted so well to the med and managed to half my OXY and Klonpin intake, but recently I've hit a reality check with the meds on a flare up and the pain hitting hard, so I had to up them a little. I've been very reluctant to do this given how hard it was to reduce down, so that's why I though the Topamax increase might help. I wonder if anyone has ever been on more than 400 for nerve pain. I know epileptics and people with phsy problems go on much higher doses, but that's a different treatment regime altogether I guess......

Blasterboy

04-06-2006, 11:00 AM

BTW, I'm beginning to wonder if this weight loss aspect of Topamax is due to the fact that some foods taste unpleasant. I find I can plough my way through some meals, but at least 50% of the time I find myself part way into a meal feeling a little nauseas and having to give it a miss. My missus thinks I don't like her cooking anymore, but I think it's the fact that my taste buds are screwed!!!

moomecat

04-06-2006, 06:38 PM

I take 150 Mgs of Topamax as well but for Headaches..I have been on it for a little over two years with a little break of a few months in between there. (My headaches returned so I went back on) In a way I believe this pill is a godsend because my headaches are no where near as bad as they used to be and are so far and between. I do have issues with words coming out of my mouth sometimes as well & can see why people call this "Stupamax". I work for a pretty prominant company and sometimes when something very important comes up I feel pretty dumb due to that! It is not fun tripping over my words hahaha..I also suffer alot of fatigue due to the Topamax..
No weight loss on it though sorry for all of you who are looking for that! Although I did not have much if any to lose and am also on Zoloft (previously on Effexor) which made me gain a bunch of weight which I did get off w/ weight watchers. I am actually going to see my Nuero tomorrow because the fatigue is getting to be a bit much for me and am currently on my way down on the Zoloft (yippee) so it would be great to be pill free :)
ps...Pins and Needles will go away with time...
oh and Soda will once again become tasty for those of you who do like it..i have no issues now but do remember back when I started having those issues w/ the flavor. I guess it just takes time to adjust!
Keep smiling :)

lindiana53

04-07-2006, 12:00 PM

Well, after I just posted about no side effects, I had a dopamax moment last night. Twice I couldn't retrieve a word I wanted; this isn't good because I teach. I'm not getting much, if any, pain relief at 100 mg. I wonder if I should ask to go up 50 mg. No other side effects at this point including, unfortunately, weight loss. I need some help with back pain, but it isn't serious enough to go on opiates. PT and yoga haven't helped, although I have great posture now.

Blasterboy

04-07-2006, 12:09 PM

lol, I've found the Dopamax moments go, even at my 400mg dose, given enough time. Although sometime, I just can't spell the easiest of words! Still so long as I have my mouth back I'm ok, given that I'm in sales and marketing, I have to spout a load of blurb all day and so I notice when there's a gab in the crap......

daylilyfan

04-08-2006, 09:37 PM

I have been on this at least 3 years. I think it may be close to 4. First worked up to 200mg a day, then up to 300. Now, I go up and down from 150 to 300 depending on my pain level. I usually take 200... but since I have RSD now (since 8-05) I have been taking 300 more.

I get along very well with this med. I take it because I suffer from incredibly tight muscles that are very painful and have been so far resistant to every treatment I've been able to find for 30 years. Topamax has really knocked back the pain of it. Now that I have RSD, which is nerve pain, they think that because I was on Topamax when I got the RSD, it may have helped the RSD from really getting going full strength with me. Which is a VERY good thing.

I had the bad tastes and some pins/needles the first 6 months. Now, I do not get the pins and needles. I either do not have the unusual tastes anymore, or I have become used to it. The decreased appetite has also gone away, so the weight loss leveled off. I did not lose much with it, maybe 10 lbs. Perhaps because we were trying a bunch of anti-depressants for pain during these years too... and they make you gain.

A great side effect has been that I can't remember the last time I had a headache, and I used to get several a week from stress or tension and neck pain.

I have not noticed any "dopamax" problems, word searching or anything like that. On Neurontin, I was a mess. I could not add 1/2 and 1/4 and come up with anything let alone the right answer, and in my job I have to add fractions like that on the fly. One time going to work on Neurontin, I was at a stoplight and could not remember where I was going. That does not happen with topamax.

Good luck!

BlueSteam

04-10-2006, 12:06 PM

I know I just posted for myself in my own post on my neck pain (jeez that sounds funny) and I am hoping to start the topomax tonight. Work comp did not reply on fri when I was trying to fill it--so I am hoping to get it today. My question is why am I taking Elavil an antidepressant and topomax both? Sounds to me from reading all the posts that this is quite common. Is it really for depression? I get a little uptight and angry, because of my situation, but I don't let anyone else see it. My tears are kept to myself. (Besides that if I cry it seems to make my headaches worse) I actually think I get more upset about my family not being more understanding and helping out than my pain. Talking to all of you has helped me a lot. So--what's the elavil for? I admit between the three, elavil, topomax, and flexeril, I think I am going to be a zombie. I am happy to hear all the positive outcomes for the tomomax and I hope it works for me too.

Blasterboy

04-10-2006, 01:43 PM

I take Elavil 50mg before bed for seisuzes and to help sleep through pain, but it's nothing like enough to be a anti depreseant at that dose and I'm taking Topamax 400mg a day and I take St John's Wort. I don't feel like a Zombie at all.

lindiana53

04-10-2006, 05:25 PM

I would gladly trade some slow recall for pain relief, but so far I'm getting the side effect and not the benefit. I can't exercise as much as I'd like because of back and leg pain, so I'm gaining weight, and the Topamax hasn't done anything to help this either. Neurontin was a nightmare for me. I couldn't keep the stuff down.

BlueSteam

04-11-2006, 11:12 AM

I do recall the dr. saying that I should sleep well on the elavil. Maybe that's what it's all about. I have been so sleepy for the three days I've been on it. I have slept well the last two nights--finally! I did start the topomax last night, but my dose is low right now, and it sounds like I'll have to wait until my dosage is higher to get any results. Dr has me going up every five days, so on Sat. I'll go up again. I'm glad I've got someone ahead of me to follow!! I can't excersise either--It hurts my neck and back, and it never fails, I end up with a headache.

dixiepeep

04-11-2006, 11:40 AM

It's late so I haven't read all the replies, I don't know what I will be repeating. I have been on topamax now for almost 8 weeks for migraines and back pain (unknown cause) and nerve pain in the foot from a failed surgery. I tirated up to the 100 mg, which was good becuase I really struggled with the mental functioning side effects. My migraines and daily headaches are almost completely gone and the few I have gotten I was able to quickly and completely zap with Axert (like Imitrex). I still can't 'add in my head' without thinking about it and I still sometimes loose the word I am looking for, or forget a persons name, but it is getting better - really this side effect is that the medication effects my cognitive abilities and is why this drug has the nicknames of dopamax and stupamax. The tingly fingers and toes have finally ceased and I unlike others can still drink diet sodas as long as they don't come out of a fountain. I have done lots and lots of reading about this drug and understand that in time these side effects are normal and will lessen. 100 mg is the 'normal' starting dose for migraine prevention. I do know (from my reading but I am not a doctor and you should not act on my information - I also don't work for any pharmacuetical company) that you can go up to 200 daily for migraine prevention and other mental disorders (I will not go into this). People who take this medication for seizures I understand can go up to 400 mgs a day. I would encourage you to discuss with your doctor. I have read lots of boards and posts about this drug - I know all about the weight loss - to me it is a feature - to the drug makers it was a an accidental bug. However for me this drug has helped me greatly with the migraines and my foot pain, but not a whole lot with the back pain. Hope this helps - there is a great web page if you do a good on topamax (something like the good, the bad, the funny) - it is not the main page by the drug maker - very informative.

dixiepeep

04-11-2006, 11:43 AM

Your post was more directed to what I take Topomax for. I still take a tiny dose. I take 25 mg but it has helped with Migraines comsiderably. I do have problems with words and I do hope it goes away because having less pain in my head and neck is great. I feel more calm. I do have a slight tingle in hands but not bothering me. I go see the doc again today. My appetite has not changed. Still drink a soda a day at most. Keep posting.

BlueSteam

04-11-2006, 05:31 PM

Has anyone had any dizziness from the topamax. It's only my first day on it, and my third on elavil, but I have had a few dizzy spells today. Just napped for three hours. wow. and I'm still tired.

Blasterboy

04-11-2006, 06:34 PM

dizziness is part and parcal of the reason why it's important to have a slow titration onto this class of drugs; I adapated really well to Topamax, but still had a little dizziness in the early days, it passed after a few days and then came back for a day or two with each of the 1st few titration ups. The sleepiness is nothing unusual also, I still get that, 3 months down the road, but then I'm on 400mg a day!

dixiepeep

04-12-2006, 09:49 AM

I have not had any dizziness but I am at 50mgs. No side effects except being tired but hardly any headaches or migraines. Some spelling problems.

Blasterboy

04-12-2006, 09:54 AM

my worst side effect on Topamax right through the titrations and still to this day 3 months in is that I count make calculations in my head!

dixiepeep

04-13-2006, 09:18 AM

I have not noticed the lessened appetite but I am still on such a light dose 50 mg and I still like diet soda. I have always preferred diet. I am calm and rather sleepy which is better than being nervous as I was. My BP is Great and my migraines have lessened. My neck and back pains are less too. I sleep better too. No more Ambien.

BlueSteam

04-13-2006, 12:47 PM

My dr started me at 25mg at bedtime for five days, Sat I will take two at bedtime for five days, etc., until I hit 100mg. It doesn't take much for me, no matter what I take. At 25mg I am shaky and nervous, and I have a strange feeling in my head, kind of a tightness. I quit taking the elavil last night, so I'm waiting to see if that was causing the dizziness. It got real bad yesterday. How long before it actually starts helping the headaches and pain? I know it will vary by person--but what is everyone else's experience?

Blasterboy

04-13-2006, 01:35 PM

That makes so much sense! I start a meal feel hungry and a few bits later I'm feeling full, sometimes a little nauseas. I get this more often with my evening meal by which time I've had 300mg of my 400mg daily dose.

I not a big soda fan, so no big deal there and I'm glad to loss the weight that the Lyrica caused me to put on (about 14Ibs,) I've now lost most of it since going on Topamax and I don't crave sweets anything like I used to when I was on the other Anti seizure drugs!

BlueSteam

04-14-2006, 12:03 PM

I hope you all don't mind if I keep posting about the topamax. It must have been the elavil making me dizzy, because that part of it is much better. The right side of my face feels funny and I'm starting to get the pins and needles feeling off and on and there is tightness on the top of my head, but I have to say that I'm not waking up every morning at 3 or 4 with horrible low back and hip pain! My neck pain seems to be intensified, but I've been a little more active also. I go up to 50mg sat night so we'll see what happens then. Are there any side-effects that I should worry about--like the tightness in my head? or is that common?

dixiepeep

04-14-2006, 12:21 PM

I wonder if that is because you are not taking the elavil that you are having the pain. I think everyone here has a different effect from taking Topomax and I am thankful for each and every post so keep posting otherwise we would never learn. I do not have any pains like that. The pins and needles thing is tiny with me and pretty much went away. I AM taking Ultram ER for pain because I have a lot of back, neck, and hip pain and the Ultram ER you can take with Topo and it works ALL day. You may want to ask your doctor about that. My soda tastes flat today and I wonder if that is what everyone is talking about when they mention soda. If that is it that is not that bad to me, it is better than a migraine. I did have a migraine last night and I took Relpax and it made it go away without knocking me out and it was great to be with the living instead of burrowed down in the bed. I am optomistic about the future. Hope you all have a blessed week-end. My girls birthdays are this week-end so we have huge parties for them plus easter egg hunts. Take care!

BlueSteam

04-17-2006, 12:06 PM

Funny story, I had to go down to our local bar friday night while my daughter went to a dance and thought I had better not have a beer while on the topamax so I ordered a pop off the gun. Told the bartender it was flat, so she gave me a can of coke. Told her that was bad too. Then a friend tasted it and said nothing was wrong with it. Then I opted for the beer. Just had one. Then, on my way home, it hit me, I felt like an idiot!! It had to be the topamax, I forgot about the pop thing. So far I am doing good on the topamax. Just a little unsteady on my feat and I feal sick on and off. Nothin I can't handle so far. My headaches are gone!! Thank all of you sooo much for letting me know about this med. The only thing is that my pain in my neck and shoulder and lower back is worse right now. As my mg's go up does that get better?? I'm at 50 mg right now. I go up to 75 on thurs. I hope I cont. to tolerate it. I also started Elavil at the same time, but I was having very severe dizzy spells and I felt like I was in a coma and went off of it. So right now I'm only on the topamax and Motrin, which the motrin is useless. My last allergic reaction took two weeks, so I'm not holding my breath. At this rate, I'm really hoping to be back to work real soon. I called relatives yesterday and even they said I sounded so happy. Two more questions--has anyone had the injection in the neck? The dr is wanting to do one and I don't know what to excpect. Had one 20 years ago in lower back and it was a wreck--so now I'm terrified. Last question. I am not a big drinker, but I do like to go out like once every 2-3 months. Is is ok with the topamax? I see they want to use it to treat alcoholism (sp). Thanks for everythings. You are all wonderful :D Angela

dixiepeep

04-18-2006, 11:26 AM

What kind of injection? Cortizone? Steroids? I had a Steroid shot in my knee for a torn Meniscus and it was awful because it was deep but it caused my knee to heal. It swelled at first but withing six weeks it was so much better. I hope you feel better soon. I think once the Topo gets into your system good it will start working better for you. It sounds like it is already on its way by the way the soda and beer tastes. You may want to check out *********.org. it is a site that is easier to understand that addresses issues regarding mixing drugs and/or alcohol. I don't drink at all so I am the wrong one to ask. I am what they call a "cheap" date. I just smell the cap and I get a buzz. Let us know how you are doing.

BlueSteam

04-18-2006, 11:48 AM

I really don't know yet what kind of injection they want to do. I kind of stopped her in her tracks. I was like---well first tell me what's wrong with my neck and then lets discuss what to do!! The last two days now I have felt really sick to my stomach and I don't know what to make of it. Honestly it could me from the ham from dinner, ham will do that to me sometimes, so I will wait it out, but I am getting itches all over, but not hives. Could be dry skin, I hope. I rarely ever drink, and I'm a cheap date too, but I do like to go out once it a while. Someone asked about why I was taking the elavil and I think the dr had said for the headaches and to help sleep. I admit I did sleep, something I'm not doing very well now. I have to call the dr today about that. was supposed to last thurs and didn't oops. tired of being put on stuff. I will check out the site thank you!!

MESSYHOUSE

04-20-2006, 06:13 PM

has anyone ever suffered from itchy scalp taking topamax? I take it for migraines and stopped it recently to see if it was the cause and it seemed to be the culprit, however my migraines returned with a vengence. I take 100mg nightly. I also have concerns that my word loss could be permanent one day! Have studies shown this to be the case? I am foever searching for simple words, like... whats the word I know its ..pass the... er.. milk!I often panic thinking im showing signing signs of early dementia! I had weight loss but its stopped and Im very sad! Will it return, It stopped when I stopped the drug and its not come back!! I stopped for about 2 months and Ive been back for 2 months. I get tingling fingers occasionally and very occasionally I do notice my eyes ache but that could also be tiredness. I ve been on the drug a year now. I just read it can cause short sight to become worse and that worried me as I did feel lately my eyes had got worse (short sight) and I have booked an eye test now. This is the first drug to ever combat the migraines, I still take naramig if its a real nasty migraine looming but this has stopped the daily headaches and 4x weekly migraines. Its the long term effects that niggle me at night. The itching....... the times i think I have nits, I work in a school!!!

trinity4Him

04-21-2006, 07:55 PM

I used Topamax for Migraines for about 5 years. August 18, 2005 I quit because for 2 years prior I had been having “word finding” problems. It only happens right after I wake up from sleeping; all night, a nap, etc. and it goes on for about a half hour to an hour. 2 examples: 1) I wake up and go to the kitchen. I say “Good Morning” to my husband and give him a kiss. He asks me where the new dog food is we bought. I say “Oh, I didn’t know where to leave it so I just put it in the …… - what’s the room called where we park our car?” “THE GARAGE??” he says. Yes! The garage, the dog food is in the garage”. 2) I wake up at my daughter’s house and my granddaughter is playing with cut out dolls. I sit down to play with her and speak normally, “How is my baby girl today?, etc. I go to the kitchen to find the scissors. My daughter walks in the room to find me searching through drawers, “What are you looking for mom?” “The, um …...” The word won’t come so I make the cutting motion with my hand. “Scissors??” “Yes, scissors”.

I went to a neurologist about the problem. He noticed I was taking Topamax and told me this is what is causing the word finding problem. So I quit taking it but I am still having the problem, just as bad. I looked up Topamax on the internet and found the side effects and the number one side effect is Cognitive – speech problems specifically word finding difficulties. Ok, but why am I still having it? I called Topamax, yes, they have heard of this problem, don’t know how long it will last, but said it probably wasn’t permanent damage. It has been 8 months since I quit and it still is happening.

2 questions.
1-Who else is having this problem?
2-Has anyone found the "cure"?

I am ready to sue the doctor who prescribed it and the makers of Topamax - if I was the suing kind - which I am not. But I do want to get over this word finding thing.

Any input anyone? I'm totally open.

Thanks.

DogMom22

04-21-2006, 08:26 PM

I take topamax for my migraines and headaches and it works very well for me when nothing else did. I was at 100mgs but wasn't functioning well and just wasn't adjusting to the side-effects. I can totally relate to the having to ask my husband what is the 'room called where we park the car?' I am down to 50mg once a day and I don't get quite as much headache relief as on 100mg but it is very close and well worth dealing with the lesser side effects. I still have word loss problems and some concentration issues, but I decided for me it was a trade-off I could accept. I have only been taking topamax for a few months and I have been told that the side effects may still get better over time and I might be able to increase them later if I want to try. (I also have a back problem that the topamax seems to help a little with). My last (funniest) word loss episode was in our newly remodeled kitchen where everything has a new place. I was making spaghetti and needed the 'strainer' and that was the word I couldn't find at the time and I wanted to ask ask my husband where it was. I was quite frustrated, stuttering, trying to force the word out, cursing at topamax, and then out of nowhere I said "I need to know where the 'spaghetti stay, water go' - 'thing-a-ma-jig' is!'" Fortunately for me, my husband speaks Dopamax (he has been forced to learn but I have helped him) and he knew right where it was and smiled when I asked him this. I have also had a few epsiodes of (can't remember the name of it :rolleyes: ) but it is the opposite of de-ja-vu (sorry I can't spell either). Anyway, it is an eerie feeling that you know you are or are doing something that is suppose to be farmiliar but it's not, it's as if you were never there before or had never seen it before - it also has a french name. It has happened to me only in my home and when alone - it is not scary - just very strange. When it happened, I knew I am suppose to know where I was, but didn't I recognize anything, I knew I was in a house and knew it was ok that I was there, and that I was suppose to know whose house I was in, but I didn't know it was my house - it puzzled me that I didn't know whose house I was in, or why. Again, I felt no alarm or panic, and on all occassions it passed within a few minutes - I simply was then able to 'remember;. This has only happened a few times and in when I first took the meds and at the higher dose. I think I read this med work on the temporal lobe which is why it has some of these effects. I guess for me, the side effects are not too terribly bad anymore and the migraine/headache relief just makes it so worth it for me. Plus I am loosing weight which isn't hurting me any. (I lead a team of people at work and have to do a lot of talking - they all know I am on this med and that it makes me sometimes loose words and sometimes mix them up a little - when it happens - I just say 'topamax' and we all laugh and move on.)

I think I read on this thread or maybe another, someone asked about stopping topamax and then starting it again - about whether it would be effective or the side effects would be different. I have read some things that say you get different results after stopping and starting - like the weight loss doesn't happen the second time - but all of that was on boards, no where did I find that on the medical and research sites. I would find it hard to believe given how this drug works - it changes the brain chemistry, which changes your appetite and feelings of fullness, can't imagine why it would be different if you started taking it again after stopping - I'm no doctor though and as always everyone is different. I never had any problems with my stomach or itching and I saw some posts with people having trouble with this. If only they could come up with the perfect drug.

Blasterboy

04-23-2006, 08:27 AM

Funny post Dogmum, I like that you've told you work colleges about the drug;; it's funny that the word loss thing gets some of us more that others, I'm om 400mg a day and rarely get it......

I do have problem eating large meals which I think is great; when I'm at a dinner party though, I think family and friends worries a little when I push away a halve (or less eaten meal.) Fortuantly I can still shuvel icecream and choclatate cake when required but I really don't crave sweet things like I used to.

I'm going to ask my PM doc if I can move up to 600mg a day though as I've had to up the Klonopin over the past 3 weeks after early success with Topamax. My Oxycontin dose is still 40mg a day compared to the 60mg a day it was and I figure it is possible I've avoided tolerance issues for the past few months I've been on Topamax. Still I was mistaken to think that I found I wounder drug; it's just a somewhat effective drug for my nerve damage.........

BlueSteam

04-23-2006, 01:14 PM

My side effect seem to get better just when I go up another 25mg's, but my headaches have been so much better. I kind of had a self induced one yesterday, and why it's hanging on today I'm not sure. I've heard all kinds of stories of people who have had troubles years after going off of topamax, but I try to do as much research on every med I can before I take it and I know what the future might hold, therefore I can't really hold anyone else responsible. Concentrating and spelling seem to be my biggest problem right now, I never had much of a problem in these areas before. I also noticed that the colder the temperature is outside the more tingling I get in my hands and feet. I was wondering if anyone has taken maxalt and what common side effects they've had. Also, since my headaches are better, but my nerve pain in my neck and arms are worse, what meds is my dr most likely to try next? I know some of you have mentioned some in the past but like I said I can't really concentrate and going back thru all of this is--well--hard. Thank all!!

trinity4Him

04-23-2006, 09:47 PM

Greetings all,

I have used Maxalt-MLT. which is the maxalt that you take if you get a migraine. MLT stands for melt which you place under your tongue so it goes right to your bloodstream. If I get a migraine, I reach for my Maxalt-MLT and it works within 30 minutes. It has been a life saver for me.

The regular Maxalt, that you take daily and is not a melt, did nothing for me. Topamax was good. I also took Toprol for a lot of years, started at 25 mgs, then 50 mgs, the 75 mg and when that wasn't enough, that is when I began the Topamax. I'm back on Toprol 25 now. It doesn't work too well, I can feel the nerves in my shoulder and a slight feeling on the left hand side of my head and eye. But the "Big Kahuna" hasn't hit me yet. I can actually control these with Excedrin. By the way, don't waste your money on the Excedrin Migraine, it is exactly the same ingredients and doses. They just added the word Migraine on the Excedrin packaging, which works just fine when it works.

About the word finding problems I am having. If I knew it was only there while I was taking Topamax and it wasn't a permanent side effect, I would probably not have a problem with it. But because I quit it 8 months ago and I am still having this problem of word finding, it is not a good thing. I have an appointment with a neurologist in a big city May 15. I hope they can help me. I work far away from home and leave the house at 5:00 am to catch a bus that takes an hour and a half to get there. Most of the time I try to catch a nap as everyone else does, but when I get to work, I have a hard time talking to my boss. He (and my husband) are extremely understanding and we play word guessing games a lot. It is embarrasing for me and especially when a stranger sits next to me on the early bus and begins a conversation and I can't talk. I seem "stuck up", but I just can't talk and don't want to embarrass myself. Maybe I am being too vain, I don't know, but I don't like it - at all. I want it fixed.

I am hoping someone else here has had the word finding problems and got it fixed. Through time, diet, sleep, pills, I don't care! I just want help. Thanks and God bless,

DogMom22

04-27-2006, 02:04 AM

I too have used the MaxAlt one that you take when you are having the migraine - it is fast acting in and out of your system, no long term effects - I didn't even know they made a version you could take every day. it didn't work very well for me - actually I should say it didn't really work any better for me than any of the others in it's class Imitrix, Axert...

I had never heard of the word find problem or any other topamax side-effects staying with people after discontinuting topamax in all of my research - which was pretty extensive - although I am not a medical researcher and don't have a medical background - but I did read all the results of all the major tests they did on this drug. (I think if the weight-loss side-effect stayed after discontinuing this drug then there would be a huge black market for it, people would tolerate the side-effects for a short period in order to get long term weight loss - just an opinion). Anyway, I was glad to read in the last post that a doctors visit was going to occur to have the word loss checked out since it is occuring after the topamax was stopped and I hope that everything checks out ok. I would be interested in hearing from Bluestream where (in general) you had heard about long-term side-effects from topamax, I am curious especially cause I want to take it for a long time.

Also, I noticed something else about my topamax side-effects - the onesw that make me stupid now that I have had more time to evaluate and have been steady on 50 mgs for 3 weeks (down from 100, where I was dumber than a box of rocks). Anyway during the time I descreased my dose of topamax, I switched from a regular GP for my back pain from a GP to a PM and the new PM switched me from Vicodin to Percocet - pretty much the same overall dosage when you account for conversions. The PM also put me on Klonapin cause I have severe insomnia - the klonapin gave me nightmares and sleep terrors so I stopped that after a few nights. The percocet gave me slight headaches and aggravated my insomnia. On my next appt with the PM I got switched back to vicoden thankfully. Anyway, now that I have been back on the vicodin for a week or so I now realize that the word loss problem and the concentration problem and the basic dopamax side-effects are much less than they were on the percocet even though I am on a higher dose of vicodin than when I was on the percocet (even when you take conversions into consderation - this is why I switched from GP to PM, old dose from GP wasn't working anymore). So for me, percocet I think made my stupidness worse - it is interesting how the same drug can affect different people in different ways and how multiple drugs can increase side-effects of another drug you are taking.

I too have been in public and had the word loss or the wrong word come out - and have been a little embarrassed - but I just laugh at myself - I might even say something like my old brain just isn't firing right today and apologize that I can't get that word right today and move on. Usually I can get the person to smile - I move on quickly and don't make a big deal about it, I don't allow myself to give it enough time to really get embarrassed. I'm not posting this to try and say that I am somehow better than anyone who might have found themselves in an embarassing situation because of the dopamax side-effects - How I handle this type of thing just suits my personality style - before I took topamax I did stupid things everyday - so I am used to laughing at myself and finding myself in embarrassing situations. (I'm the one in the supermarket with a case of soda on the bottom of my cart that is leaking all over the place and I don't know it. I am the one who is standing at an automatic door cursing that it is broken and won't open and it's because I am trying to go in and I am standing in front of the door coming out and I don't realize it until I get hit by the door when someone comes out - this was before I was ever on any meds - you got the idea.) So I offer 'my way' as ideas that might help others cope with handling these situation as you get used to the medicine. And for those who are still tirating up - just a reminder that the side-effects might and likely will improve.

BlueStream, it would be good to hear how you are doing - I saw you were getting ready to go to 75mg but were wondering if you needed to go to 75 since your headaches seemed to be under control - just curious (BTW - 100 mg is the standard starting therapuetuic dose for migraines and from there typically the go up if it isn't working.)

BlasterBoy - I don't know how you manage on such a high dose... Then again everyone is different.

Blasterboy

04-27-2006, 10:12 AM

Interesting points you make about the word lose thing. I was thinking about it and I do have many problems with it, but I'm a very self confident person and so I brush it off very fast; DogMoms post made me realise the difference with that. I actually do get my words in a mash sometimes it's sort of funny, but I'm a quite serious chap when talking and I move quickly on, with a smile if need be. Funny, how I just assumed I didn't have any problems, but actually it is that I've got used to them..........

I tell you what is really bugging me if the pins and needles in the palms of my feet. They are starting to wake me up at night! I hope this passes soon, it's awful when I have a spell; for anyone who doesn't have them it's like that feeling when your limb is coming back to life from pins and needles and it feels weird for a couple of minutes and in your legs you can barely walk. Well when this happens from the Topamax I start jumping about like I have Fire Ants in my socks and the feeling last for about 15 minutes, it sucks!

BTW, regarding the high dose, my head feels clear, I guess I have a tolerance to medications; it's allowed my to half my Klonopin dose and reduce my Oxycontin dose by a 1/3; I'm taking this medication for post operative nerve damage! Plus compared to the other nasty Anti seizure drugs that made me crave sweets, I've lose 12lbs in 3 months :-) and people with Epilepsy take much higher doses.

curiousforever

04-27-2006, 04:37 PM

I tell you what is really bugging me if the pins and needles in the palms of my feet. They are starting to wake me up at night! I hope this passes soon, it's awful when I have a spell; for anyone who doesn't have them it's like that feeling when your limb is coming back to life from pins and needles and it feels weird for a couple of minutes and in your legs you can barely walk. Well when this happens from the Topamax I start jumping about like I have Fire Ants in my socks and the feeling last for about 15 minutes, it sucks!

BTW, regarding the high dose, my head feels clear, I guess I have a tolerance to medications; it's allowed my to half my Klonopin dose and reduce my Oxycontin dose by a 1/3; I'm taking this medication for post operative nerve damage! Plus compared to the other nasty Anti seizure drugs that made me crave sweets, I've lose 12lbs in 3 months :-) and people with Epilepsy take much higher doses.

I was put on topomax for nerve pain. Not sure what is causing mine. had to switch neurologists cause he quit taking my insurance. The second neurologist told me topomax CAN INCREASE nerve pain.

And it really really did - the knives in my feet were very painful...and all I have for pain is percocet...didn't help with that at all.

He took me off the topomax and put me on lyrica. Not sure if it's helping - going to detox off of it to see. But the painful feet is gone - sitll have neuropathy in them - but not anywhere close to what it was on topomax.

Blasterboy

04-27-2006, 04:57 PM

Hi Curious,

I don't know whether you were relating your feet pain to my feet condition, but mine feet symptoms aren't painful, just somewhat unplesent.

I hope that the Lyrica works for you; I found that helpful, but not as good as the Topamax and the weightgain on Lyrica was too much in relation to the benefits.

curiousforever

04-27-2006, 04:58 PM

I haven't gained weight on the lyrica.

i have a few days a week where I throw up. i hate it and it's due to the meds I"m on...

BlueSteam

04-28-2006, 10:54 AM

DogMom, sorry it took me so long to get back to you. I had unrelated dr appt's yesterday. I was looking at other boards about the topamax and that's where I found people who where still having trouble with the topamax. This one guy, tho, I was really wondering about, because it seems like he had a lot of other mental troubles, that could be causing some of it. But other people, had lasting effects also, only for a few months. To me, not having the headaches is so worth it. Iv'e even had more energy. I did over-do it the last couple of days and now my neck is killing me. Thanks to BlasterBoy, now know why I am craving sweets!! I never was into cake, or sweets before and now all the sudden I want cake. I only make it thru half of dinner, tho. Once in a while the pins and needles get very intense and drive me nuts, but sometimes it's very mild. I've even had it in my knees. I did notice the colder the temp. the worse it is. BlasterBoy--maybe try to keep your feet warmer in bed, lol!!

BlueSteam

04-28-2006, 11:04 AM

Oops--I forgot to let you know, DogMom, I moved right up to 100mg's without a problem, a little brain fog, hard time typing, lost my truck keys (which was alchohol induced, we were celebrating and I used the keys to unlock the house) etc, just stuff to laugh off. I don't really know if a person is supposed to drink with the topamax, but I do know they are considering giving it to alcoholics to curb drinking. It made my husband nervous, but jeez I needed a break and I felt good, but sitting on a barstool for hours made me hurt, so I don't advise that. We rarely drink, but I'll ask when I see the dr today. I'll also find out if I'll me going up on my mg's anymore.

Blasterboy

04-28-2006, 11:13 AM

That’s an interesting one, about giving it to Alcoholics to curb drinking. Sort of like sticking a band-aid on a crack in the Hoover dam, IMO..... I can't see it. But then I'm not an active Alcoholic so I can't judge whether it has any benefit with that. I gave up drinking the AA way nearly 5 years ago and it had to be complete abstinence for me.

Still I bet the drug company would love to get this approved as a treatment for Alcoholism!

DogMom22

04-28-2006, 05:53 PM

Thanks for the updates everybody. About the pins and needles, when I was having them they were a little bit on the painful side to the point of being uncomfortable and the spells would last about 15 minutes or so. Now I don't think I am even getting them. I suspect the higher does BlasterBoy is on could be accounting for this - no matter it sounds like BlasterBoy is getting great benefit from topamax since he has been able to reduce the need for other meds. I read somewhere that drinking lots of fluids can help with the pins and needles side effect and I also read that the drug manufacturer recommends drinking lots of fluids becuase of the kidney stone problems associated with long-term use. I used to drink diet sodas around the clock (switched to non-caffienated at night). Because of the taste I can still drink them but I have added drinking Propel - a gateraid product. It is expensive if you but if from 7-11 but I can get it at Walmart for a good price and the Berry is excellent - I am finding I prefer it over soda - but I still need my soda for the caffiene in the morning. One of the topamax sites I have been on has a lot of people raving about this propel to help with increasing fluid intake - I was skeptical at first cause I just don't believe in buying bottled water - cripes water should be free ya know? BUt this stuff tastes so much better than water and it has like 10 calories for 16 ounces - so I thought I would share.

I also wanted to share about BlasterBoys comments about realizing that he is actually having some trouble with the word lose but kind of didn;t know it. I too am a fairly confident person and generally move very quickly over these incidents, with a joke, a smile (or nothing at all) which leaves no time to be embarrassed, however I was aware of this very common side effect before I started the meds so I was kind of looking for it. I told all my co-workers and my boss about it before I started taking it, so if I did something dumb or weird they would know why.

BlueStream - so glad to hear that it sounds like this is working for you too.

I did have a migraine yesterday :mad:, my Axert didn't zap it and it was the first one I had since going on topamax. It was that time of the month (sorry guys) but is typcially a migraine trigger for me. It was a really bad one, so I went to the ER for toradol (a non-narcotic which often works for me and allows me to stay cool with my PM contract). Typically this type of migraine at this time of month will take me out for a couple of days. ANyway, while I was in the waiting room (about 2 hours) - it went away! :bouncing: This is soemething else that topamax is suppose to do - it is a prevanative but is also suppose to lessen the frequency and duration of the ones you do get and I can definetly testify that this is true - in the past this would never have gone completely away - I was fine afterwards, not the usually post migraine sick.

Also thanks for the updates about the long term effects that might stay with you afterwards - what you said makes sense and maybe this person had problems to begin with. By the way topaxmax is also used for a variety of mental illnesses usually in combination with other meds. When I first started taking it I couldn't figure out why it could possibly help with so many different ailments and I finally found an answer that I can understand. Basically, topamax slows down neurotransmitors (GABA to be specific and most directly impacts the temporal lobe and is why we get the cognitive side effects). Anyway the idea is that the nerves are slowed down, less likely to react to stimulus, so for epilepsy they help prevent the chain reaction that starts a seizure - migraines, same kind of thing - anxiety - slows them down - and same for pain - the idea is if they are less active and not responding to every little stimuli that you will have less of whatever ails you.

Have a good weekend!

BlueSteam

04-29-2006, 02:02 PM

Hi everybody, first of all, I have said that I haven't had problems with remembering words, but then I have been home mostly, I could not find words when I spoke to my dr yesterday and then when my husband and I went out for a couple hours last night (again) so I lied. I did have my second appt with the pain dr yesterday and he was pleased that the topamax is working and he said he did find bulging discs in my neck. Since Oct. my other dr has said my MRI was clean, no problems. I am beyond angry now. I am not sure what to do. He wants to try steriod injections on the 23rd of May and I'm scared of that. So now I have buldges in both my lower back and neck with nerve problems in my legs, feet and shoulders and arms. If I was a horse, I'd be dead. I did have to be put on nexium last week for really bad heartburn and this dr wants me to cut back on the motrin or quit taking it and won't give me anything else. What the heck!! I really want another MRI done, it's been six months and things are worse, but he won't do it. I'ts going to be so hard to find a job that won't hurt my neck or my lower back. I guess I'm just lost. And sad. My husband keeps telling me to listen to this new country song that says if your sad don't show it. Whatever. Today we have to go burn a stuble field so maybe it will get my mind off of all of it. It is very nice out, no wind, which is so unusual. Have a wonderful weekend all of you and thanks for listening. I feel better now. :)

Kissa

04-29-2006, 04:02 PM

Bluesteam couldn't you go to another doctor for a second opinion, preferably a nuerosurgeon or orthopedic surgeon who specializes in spine surgery who in fact may do a new MRI since it has been 6 months?

BlueSteam

05-01-2006, 10:15 AM

Because this is a work comp claim it makes everything very touchy. I am contacting my lawyer today to see about a second opinion. As far as I understand I should have that right. I sure hope so. I'm sorry my post yesterday was so emotional--I'm better today. I was so angry that we have wasted so much time. I could also tell that my first dr didn't believe me when I was telling her how much my neck hurt. I am letting her know today what we found also. She is a nice person, just very inexperienced I think. and a pill pusher. It is so nice not having these headaches. I find myself doing too much tho and hurting my neck, so I guess I had better slow down. darn. If I can get ahold of the lawyer I let you know what happens. Thanks for the support. Angela

nobodyatall

05-01-2006, 12:35 PM

I am on 100mg - i cut back myself - my pill pushers had me on 200mg and I did not like what it was doing to me. I was groggy and lifeless.

And to be honest - it has not done much for all the head damage I have from the accident. It has been 4 years - just getting worse - not better.

I was a comp claim - and they did everything under the sun to deny my meds/docs/tests! I had to take them to court every other month - but I was still denied.

It wasn't until one of THEIR doctors said I was being denied seizure meds in his report - then they finally started to pay for it. Big deal - $300 a month they had to pay - but then they denied all the rest - comp carriers and their attorneys are maggots! They would rather see you die than help you. Then they wonder why we become totally disabled and we cannot work anymore - they deny everything! With proper care and meds as well as therapy - we could have a better quality of life - but they don't care - may it happen to them too.

trinity4Him

05-01-2006, 03:17 PM

:wave: Hi everyone!

Gosh, the more I read, the more I realize the effects Topamax had on me and I didn't realize it was Topamax! For instance, the tingles in the legs; I took my pills every night when I got home from work (about 7) and that night about 8 or so as I was laying on the couch, my legs would begin to have those tinglely feelings - pins and needles. I had no idea what it was; I thought I had very bad circulation - hence the cold feet I always have. And are y'all saying the Topamax caused you to crave sweets? Because I have never been addicted to any kind of sweets and can easily go without, but when I was taking the Topamax, all of a sudden I couldn't pass it up. Instead of sharing a dessert with my husband, I wanted my own! Amazing!

I feel for each of you. I'm sorry for the pain and I can truly say, I know what you are going through. Maybe some day they will have a cure, not a fix. Think?

Have a wonderful Monday and God bless!

BlueSteam

05-02-2006, 10:29 AM

The lawyer said being sent to the pain dr was a second opinion. Maybe. She also didn't have much to say about being misdiagonosed for 6 months. I actually talked to the paralegal, so maybe the lawyer herself will have something to say. I have really overdone it with my housework. I can feel the headaches wanting to get me. And now the neck pain is really bad. It's been nearly a year since I have felt this good and I did too much. I will take it very easy over the next few days, and not do that again. I had to be put on an antibiotic yesterday with all kinds of wierd restrictions, like no caffiene, vitamins, or large amounts or food. I love my coffee. I wonder if anyone has ever gotten a strange taste in their mouth from the topamax. It's a hard one to explain. I'm also losing things. I still can't find my truck keys! My daughter is having so much fun with all of this. Teasing me about my dopamax!! I am finally sleeping better at night. No naps during the day anymore. Have a good one!!

DogMom22

05-03-2006, 01:40 AM

Ah yes the loosing things problem. I had it more in the beginning and still now occassionally. It is from the topamax for me I am sure as I never had the problem before and it matches the list of side effects very nicely. It is part of the ability to recall (where did I put that? or where do I keep that?)

Usually now when I loose something it is only for a short while (under a half hour) and thankfully I haven't lost my keys. Here is my funniest 'lost' story while taking topamx (I have to laugh at these or I just couldn't go on):

I carry a little make up bag with me everywhere I go. It is about 6" long by 4" wide. I don't where a lot of make-up but I take this little bag with me where ever I go - always. It has a place in my house, on a table right my the front door, next to my keys as a matter of fact. When I leave the house I grab it where it then sits in my truck. If I go to work it then comes inside with me and sits in a desk drawer. Perfect system, I have been doing it for years with never a problem, never caught without my make-up bag. A few weeks after starting topamax I bought some new makeup (about $20 worth) and replaced some of the old and I remembered putting the new make-up in the bag and taking the old out. Then one day I went to go grab my make-up bag off the table by the door as I was leaving for work, and as you can guess, there was no make-up bag on the table by the door. I looked all over the house for it, couldn't find it and figured I must have left it somewhere and would come across it. I checked my truck, I checked my office, I checked my husband's truck and I checked the house again, even places I couldn't imagine taking a make-up bag. I asked my husband if he had seen it (my kids don't live at home and I know my dogs didn't eat it - well let me just say that when my dogs eat something they shouldn't I know pretty quickly...) After a few days I figured I would eventually run across it, that I would eventually go to every place that I might have been. However I was a bit upset with myself that I couldn't remember to save my life the last time I had seen it, all I could remember was exchanging the old and new make-up. A week went by and another. I thought about buying another make-up bag but didn't much like the idea of spending the money to fill the bag, although I was kind of tired of looking at my plain OLD face. Some more time went by. AND THEN one day I went into my kitchen... and ... opened the refrigerator and pulled out the tub or margarine and there it was behind the margarine on the shelf in my refrigerator! Now here is the thing - I know I did this, my husband did not play a trick on me (although I would like to give him credit for it). I have absolutely no memory at all of doing this, but I feel very sure I did this and I tell you this, the next time I loose something and can't find it anywhere, you can bet I will be looking in my fridge!

BlueSteam

05-03-2006, 11:20 AM

DogMom, that is good! Honestly I did look in my fridge. I remember putting away some groceries that night. I did go out with my husband for a couple of hours that night so I had some drinks in me too. Great combination. I even cleaned out under my sink yesterday hoping to find them there. I went thru the trash. Mind you my husband and daughter were laughing the whole time. My truck key is a costly one. It is driving me crazy. I think I remember dropping them, but my hands were full. I used them to unlock the door of the house. We have a ten month old dobermin who thinks every thing is a toy so I have walked the property also. The problem--we have a ranch. He probably only roams around on 5 acres bus jeez. I even looked in his dog house. I'm sure he didn't swallow them--we would be at the vet by now. I thought my husband was messing with me too, but he would have given up by now and let me off. I'll just keep looking---have a great day!

DogMom22

05-03-2006, 09:23 PM

Good luck BlueStream - I hate to say it but since it is one of those expensive keys my guess is the darn things will finally show up sometime after you decide to go and replace the one you have lost. Isn't that just they way. BTW - I live on a little ranch of sorts - I am in Virginia so we don't call them ranches here - we call ours a farmette - a mini farm. Anyway - I read your other posts too - we have some other stuff in common besides the topamax. It sounds like you are having a hard time getting a clear diagnosis and therefore difficulty getting treatment for the pain symptoms and belief that your pain and problems are real. I think you said workmans comp was involved so I assume an accident or something. I didn't have an accident, but I have a back problem that no doc can seem to find what the problem is, but thankfully my regular doc and now I have a PM believe me and are aggressively treating the pain symptoms. It was nice hearing about your ranch and dog - makes me not feel so alone.

BlueSteam

05-04-2006, 10:44 AM

Hi DM--I remember thinking we had a lot in common also. My new pm dr did finally find some bulges in my neck that the other dr had not seen, so at least I can tell her now that she was wrong. I felt so much better with the headaches gone, but I can't seem to be able to use my arms too much without causing myself a lot of pain. I wonder if that is common. We have to put off the injection on the 23rd because my husband will be out of town. (they are going to heavily sedate me) I'm pretty used to the bulges in my lower back--I had herniated 3 discs when I was 17, so this is a cakewalk compared to that. My headaches are really trying to come back and I'm really afraid the dr is going to up my mg's of topamax. I'm at 100 right now. I take 50 at bed time and 50 in the am. It takes me until about 3pm every day before I start feeling half-way human. Some days are better than others. Yesterday I felt like I had been hit by a bus. I have worked some pretty hard jobs most of my life, for a girl, lol, then I take this job, sitting at a computer for 10 or more hours a day and I started getting bad headaches, tingling in my shoulder and my lower back started killing me. I was spending my weekends healing up just to go back to work. Finally went to the dr. My body just couldn't handle sitting. I also found out my back was full of athritis. Probably why the injury was allowed to happen. What happened to you??

DogMom22

05-08-2006, 09:36 PM

I too sit at a computer all day too! Before I tell you my little story - you might want to ask your doctor if you could try taking the whole 100 mgs at night since you aren't feeling even part way human until so late in the day. I did this for a while when I couldn't function. Now remember, this stuff effects everyone different and you have to weigh the benefits over the side effects... So when I changed to 100 at night and none in the morning what I found generally was that I still had the full benefit of headache control (my migraines are not caused by my back problems oe neck issues - I have always had what I will just call regular vascular migraines) - anyway I did feel a little more human during the day by not taking any dopamax in the morning - but not much - still couldn't concentrate, still loosing words (and dogs), still pretty stupid - for me not really tolerable. (My doc was the one who recommended trying the full 100 at night instead of 50/50.) Anyway, it was then that I asked my doc whether I cold try a lower amount all together and is why I am at just 50mg once a day that I take at night and it helps my migraines and I just this week determined that it is also helping my back problem - I forgot to take it one night last week and my back pain was much worse the next day - and I remembered that a few weeks before I had forgotten to take it on night and had the same increase in back pain the next day - so I have concluded that the topamax is helping my back problem. Now at the 50mg I am still having problems concentrating that are bothering me but my migraines are down and my headaches are almost 0 which is great compared to before - I am however debating whether to keep taking it or not because of the concentration problem - it is affecting a lot of parts of my life - I decided to hang on longer, hoping I will get more used to it - I think I am able to keep hanging on because of the realization that it is helping my back and I am loosing weight - about 10 pounds in 10 weeks or so, which is good cause I just couldn't exercise any more last fall and gained 10 so I am back where I started - except I still hurt too much to exercise.

I tried to post my story - but I got a message that it was too long - that's me always ramnling - I am going to cut it and post it on the post that says post your story here if you are interested.

dixiepeep

05-09-2006, 09:10 AM

I have not had the weight loss effect but I recently had foot surgery and am walking in a surgical shoe. I have 2 more weeks in the shoe. I am only on 100 mgs of topo. Migraines have decreased somewhat but I still get some. I had a bad one the other day preceeded by Aura (why dont we have spell check on these boards?) anyway between the surgery and the hobbling around on the shoe an old friend of mine saw me and said "You have gained a lot of weight girl" I am like "thanks" To myself I said " YOu still have that big old Bubble Butt you have always had I see. It really hurt my feelings of course since I can't run track right now in my surgical shoe. I have been eating healthier but I am very short so I have to lose a lot for it to show. At least Topo is working on the Migraines. I am thankful for that.

BlueSteam

05-09-2006, 10:39 AM

I do have to say that I no longer sit at the computer all day---only for the couple of minutes that I chat with you guys :wave: If I hold my head or any other part of my body for more than a few minutes now, I end up in a lot of pain. I will ask my pm dr about adjusting my dosage and see what he says. I have also noticed some muscle twitching at night--I wonder if it is conected? I am wondering also, now that I am out of therapy and not seeing a chiro if I could go off of the topo. No one could touch my neck before whithout me getting a migraine. Last night my oldest daughter walked up behind me and grabbed my neck , I almost panicked. She was like-Oh, Mom, don't be a baby. I was worried. Before, that's all it would take to set off a migraine. I've been checking out the other boards trying to find out what I can about the steriod injections. some people are really against them and others (not very many) say they help. I see my pm dr on Fri, so we will discuss my options then I suppose. A spell check would be good since concentrating and spelling seem to be my biggest problems on the topo. Have a good one!! I'll see if I can find your story!

DogMom22

05-10-2006, 01:03 AM

Hang in there BlueStream I will watch for your posts to see how you are doing.

Note to DixiePeep (did I get that right) - I think you said you were on 100mg topamax for migraines (and it was working for migraines) and you just had foot surgery and are in the walking cast. I had endoscopic surgery last december for plantar faciitis (sorry I can't spell it but I can pronounce it) and did the foot cast thing and I did gain weight then, plus that was when I finally had to give up exercising due to my back problem, just couldn't take it anymore. I know about how a statement like your friend (?) made can sting - they kind of joke and don't mean to hurt but when you are already sensitive ouch. Anyway, I don't know how overweight you are or aren't and I don't know how much of this very long and very great post of BlasterBoy's you have read or how much research on the internet you have done in regards to topamax and it's weight reduction side effect. So in case you haven't quite gotten everything we have shared here on this board let me offer kind of what I have gotten from my own research (I am no doc or medical professional) and my own personal experience and maybe this can help you with your weight problem in addition to trying to eat well - which is important and ultimately the best way to maintain a good weight. So, 1) weight loss on topamax is a common side effect but not everyone gets it, you may or may not be one who doesn't get it 2) the drug does not increase your metabolism or do osome other magic to make the weight just come off, in other words it doesn't allow you to consume the same amount of calories as you did previously with the same amount of exercise and somehow magically burn more 3) the way it does promote weight loss is that it effects brain neurotransmittors that effect appetite and feelings of fullness and feelings satisfactions and even cravings for sweets and carbohydrates and 4) Finally, depending on what other meds you might be on, they might counteract the weight loss effect of topamax or the reverse (sometimes depending on a person's medical condition topamax will be the drug of choice given to help counteract another drug's weight gaining side-effect, specifically some of the anti-depressants, as topamax is amoung many other things is also used as an adjunct therapy for bipolar disorder (just becuase we take it for migraines or nerve pain does not mean we are bipolar or have epilepsy - this drug just has a very wide range of uses). Ok - so for you, my recommendation would be to try to listen to some of your bodies cues that the topamax might be giving you - look for feelings of fullness and satifsfcation - see if you are really hungry - of and finally - I don;t know if you just started taking it - for me it took several weeks before I noticed that my appetite changed and often I was not hungry. SOmetimes I found I just wasn't interested in clearing my plate - which was weird - that was something I always did before. I'm done - feeling bad that I am taking over Blasterboy's post - but I know how sucky it is to suffer with weight gain - curious what other meds you are on as some can really contribute to weight problems...

Blasterboy

05-10-2006, 09:24 AM

Just seen my PM doc today as I've been suffering really bad pain over the past few days and he's added Lyrica to my Topamax and he's it to be the top dose of Lyrica 300mg a day ontop of my 400mg of Topamax 400mg a day; he's also trewed other meds, but I didn't know that Lyrica works on different calcium channels that Topamx; I thought that they were basically the same. The most hopeful thing about this is that I found Lyrica the most helpful med in that class but the weight gain was too much to bear, so I'm hoping that the Topamax will cancel that out!!! Time will tell.

The main reason I'm in so much pain is that I'm getting married in 10 days; not good for a cronic nerve pain suffer, I'm breaking out in little white spots on my torso and chin and spots on my face and although I feel reasonably calm on the outside the central nervous system takes no prisons, or is that visa versa; DOPAMAX......

dixiepeep

05-10-2006, 09:32 AM

dixiepeep

05-10-2006, 09:56 AM

Oh My BlasterBoy! Spots! What does doc say about that? I hope your pain goes away soon. My heart goes out to you and your future Bride. Getting married has enough stressors of its own without physical pain and spots. Bless your hearts. Saying prayers for you both. Keep us updated.

Blasterboy

05-10-2006, 10:05 AM

Thanks Dixie, I'm taking Pro-biotics also, to helps the body cope in some way, but I feel like I can play "Jingle Belles" if I jump up and down :-)

BlueSteam

05-10-2006, 10:26 AM

Congradulations Blasterboy!! Maybe your spots are stress and will go away?? I hope so!! DixiePeep--Don't feel alone, I've put on weight also. My husband is the one who makes the little remarks. I keep smiling to myself and think, well he was the little chub when I met him. lol Then I feel better. I've noticed that I don't always want to finish my plate and I've started ordering smaller meals when we go out for dinner. I was getting some incredible cravings for cake tho--something I've never really cared for before. I had to cut that out. Weight loss takes time, especially when you can't get a whole lot of excersise--so hang in there!!!

DogMom22

05-10-2006, 11:05 PM

Wow, BlaserBoy - now on Lyrica and getting married! Actually - congradulations and let's hope the little spots go away after you get married - stress (good and bad does funny things to us). Now to the Lyrica - I have heard of both Lyrica and Topamax being used at the same time, although the same class of drugs that the have slighly different mechanisms (and maybe that is what you were referring to with the channel something or others) - but one of the main reasons they are used together is exactly as you stated - the weight gain from Lyrica - the hope is that the wight loss side effect from topamax will counter it somewhat or a lot - that's what I was trying to explain to DixiePeep - they use Topamax w/Neurontin and Amtriptyline (when you have the right kind of medical conditions as those 2 drugs are very bad for weight gain also. Gosh I hope this helps bring you pain down some.

I have had a little change in side effects with the topamax and don't know what it means. Just in the last few days, my appetite has changed more like it used to be - I am eating more and going for more sweets. Can't figure out why, nothing has changed - no new meds, no change in meds, no change in stress. I am trying to evaluate if I still have the same level of dopamax problems concentration - don't know yet - I am wondering if I have finally become adjusted to it. Time will tell and I keep you guys updated. No change in pain level or return of headahces so I believe it is still working. Not sure if I am happy about it or not. I think I will be happy if I find my concentration is back - I need to wait for a few things to happen where I will know for sure if this is improving - there are a couple things I try to do that this is really hard for me since taking dopamax. Later.

dixiepeep

05-11-2006, 01:20 PM

Curious, Why does cola taste so flat?

Blasterboy

05-11-2006, 01:58 PM

Not sure on that one, but it reminds me that I wanted to share that I've found that I can drink Spirte/7up no problem, the taste is barely effected. I noticed this whilst on holiday and it was so bloody hot that I had to have something like a cold can and I was so relieved it tasted ok :-)

dixiepeep

05-11-2006, 02:31 PM

I drink diet anyway but it tastes flat. Sprite is okay like you said. I joined a walking club at work but can't really walk a lot until I get this surgical shoe off. I enjoy walking at lunch when it is not too hot outside. It really lifts my spirits. It is kind of depressing not being able to get around with this surgical shoe. Two more weeks and I hope to at least be in a pair of Nike's.

DogMom22

05-11-2006, 06:14 PM

Dixie - the thinking is (I don't know but form what I read) the reason topamax users have a common side effect of not being able to enjoy sodas cause they loose the ability to enjoy or taste the carbonation is that the topamax has either carbon in it or involved in it's making and so when it get's into your system it somehow messes up how your body reacts to it - I know that wasn;t a great scientitifc explanation, but it was the best I could find and it is an extremely common side effect - one topamax web site I went to when I started preps you before you take it and tells you that you need to be willing to give up soda cause it is going to taste like '...' I won't repeat the word they used - the point is it is common. I noticed when I lowered my dosage it got better, I also noticed that diet is worse than regular (which stinks cause diet is all I drank) and if it comes out of a fountain I can't drink it at all, but out of a can I can tolerate it. Pretty much I now drink one diet soda in the morning and the rest of the day I drink Propel (flavored water, very low calorie.)

BlueSteam

05-12-2006, 11:21 AM

I've also noticed that 7-up is much better that a coke right now. One thing that hasn't gone away yet for me is that I am still getting short of breath very easily on the topamax. I'ts getting to be kind of a pain. I was scheduled to have the injection on the 23rd, but it has to be rescheduled. The pm said that if it works for me I may be able to get off of the topo. Now that the headaches are better I've been trying to do a little more, but I find that I keep getting slowed down because I'm running out of air. I'll ask my pm about it today at my appt. My husband has been gone all week so I thought I would suprise him and repaint my kitchen and redo my cubbard doors--well I have way over done it and talk about being in a lot of pain. I've got the usual pain in my neck and arms, but a squeezing sensation around my head too. I haven't had that in a few months. Painting is not something that someone with a bad neck should do, just in case anyone else is consindering doing it. My kitchen is pretty tiny so I didn't think it would take a whole lot--who was I kidding!! I didn't even do the ceiling! My daughter was a big help for the first couple of days, but even she said it was only fun for the first couple of days. DogMom--when I got home yesterday--there was our big, portable airconditioner laying out in our front lawn, with the cord chewed off of it. The dobermin had dragged it out of our shop by the cord! This thing is four feet tall!! My husband said it's no differant that a smaller dog dragging a blow dryer around. This is why I need to have my breath back!! I did find it kind of funny and he is still puppy at ten months. He keeps life interesting. Everyone has a great day.

DogMom22

05-12-2006, 10:29 PM

Dogs - Don't you just love them! That is new story for me to add to my collection. I have done lots of rescue work with Labs although I don't do much now. Yes, BlueStream it sounds like you over did it - maybe thinking you were starting to feel better and anticipating feeling even better. Anyway, rest up. Definetely ask the doc about the breathing, I don't know if that is the topa or not. I hope the injection helps you, let us know and hang in there.

Blasterboy

05-13-2006, 05:12 AM

Hey guys the Topamax and Lyrica mix is working well. I'm on top dose of both drugs (300mg Lyrica and 400mg Topamax) and it's enabled me to drop down my Klonopin dose and hold of from an assumed Oxycontin increase and my pain is manageable at the moment although at levels 4-5, I guess we have to live with that and just allow it to be. So anyone on the Topamax for chronic nerve pain, don't be afraid to ask your PM doc about adding Lyrica to the mix; that's been my experience anyhow and I do tolerate drugs very well; my system had to learn to do that in my drinking days I guess!?

BlueSteam

05-14-2006, 12:41 PM

I did rest up yesterday and I will most of today, I will never over do it again. I went to my appt on Fri and they had cancelled it because I am scheduled for my injection. I guess it is standard to do that. I was very upset that no-one had notified me since I drove over 50 miles--not to mention I had questions. I did corner the nurse, who in turn cornered the dr, so a few questions did get answered. I asked to go off of the topamax, so I will slowly start backing off of it and see what happens. I wanted to know why I don't have anything else for pain too, but it was hard to ask too many questions in the hallway. I may find out that the topo is helping more than just my headaches and go right back on it. I just want to feel myself again. I mean, I think I'm tolerating it pretty good, but I'm so unsure of myself sometimes. I was wondering about the Lyrica too. What does it do? The dobermin saw his first bull snake yesterday. He was fine with it as long as my husband was holding it, but when he put it down and the snake started hissing and puffed up the dog about wet himself and took off running!! It was soooo funny. He was afraid to walk in any grass for about two hours after that. But then so was I. I really hate snakes and it takes me forever to walk anywhere because I have to watch every step I take. We have a lot of rattle snakes here. Happy Mother's Day!!

BlueSteam

05-14-2006, 02:06 PM

OK--I'm only on my second day of going down on the topo and I am feeling kind of out of it. I was at 100 mg's and now down to 75. 50 at night and 25 in the am. Do you guys think it normal to feel strange going off of it? I even think I'm feeling a little headache too. Maybe I should have waited until my neck calmed down from all the sanding and painting I did--plus I still have to put everything back. ouch. Stupid too because we went out Fri night and had a few drinks--second time in a couple weeks--not really like us, we hardly ever drink. But that was the day before yesterday. I suppose you have to look at the whole picture too, because I'm not eating a whole lot. I've lost ten pounds in the month I've been taking the topo. Actually just in the last two weeks. Blasterboy--didn't you go down?? Did you feel ok? I can't remember off of the top of my head--who did what, sorry. dopamax moment. any comments would be nice, thanks.

Blasterboy

05-15-2006, 05:22 PM

Here's the the twit of all Topamax moments!

I'm watering the garden with hose pipe in one hand and my cell phone in the other and I've just spoken to someone on my phone and I put my cell phone on key board lock-out; about 10 minutes late I realise I'm still holding the bloody phone to my ear!

O well, blame it on the meds, lol.......

DogMom22

05-16-2006, 02:07 PM

Blaserboy! That was a good one with the phone!

Hey when I went down from 100mg to 50 mg of topamax I felt funny for a few days - also I notice when I forget to take it for one day I see extra out of it. I'm not sure but maybe this is why they say to not stop taking it suddenly. When I lowered I went down to 75mg for about a week then down to the 50mg.

coffeegirl2

05-16-2006, 06:03 PM

Topamax user since 2002. Wow, I have learned more from reading this post. :bouncing:

One thing that happened to me. I ended up gaining weight from Abilify after I had lost 25 pounds from the Topamax. Of course, that weight that I had lost from the Topamax was pre-gained weight from Paxil!! UGH!!! Darn meds. What a merry-go-round.

I take Topamax as a mood stabilizer. It has been very helpful for me and works in conjunction with Wellbutrin XL, an antidepressant as a combo mix. I too, suffer from the cognative side effects. One contineous thing I do about every single day is this: I want to always put the coffee pot into the fridge, and why? Who knows? LOL It is right there, and you would think "Gee, the coffee pot does NOT belong in there!" But I certainly try to put it there only because that drug tries to re-do my brain somehow with brain fog.

Thanks for all the information. I hope to stop by here again. At least I've learned something new about this so I can inquire at my next pdoc session.

Coffeegirl

BlueSteam

05-16-2006, 06:28 PM

Ha! I am so not alone in the wacky things I have been doing lately. I'm so glad that nobody sees some of the things that I have done. (I still can't find my keys) I had to go back up to my 100mgs and I have a feeling that unless the injection helps me, I may be going up even more. I shouldn't have done the sanding and painting--things are very irritated and I'm fighting a lot of pain and headaches now. I've been very nervous about the injection, but I found out a lot of info on the spinal cord board. The thought of a needle in my neck bothers me more than one going in my lower back for some reason. I have until May 5th to be scared :eek: I will be sedated and I heard that I shouldn't remember a whole lot or feel too much--I hope that's true.

JackieH

05-28-2006, 08:31 PM

:wave: Hi Everyone,

I'm from the ACDF crowd on the spinal disorders board & bluestream sug. topamax to me a few weeks ago. So...I told my doc about it & am 10 days into it & up to 50mgs. (Had dbld. cervical fusion Jan.30th didn't help arm pain or headaches at all.)
I'm tollerating the drug OK, I guess. However, no pain relief at all yet ... headache's really bad all the time....but I am DETERMINED to give this a good 6-8 week try. Gabapentin gave me 50% drop in pain for a few months but it makes you gain weight & I want less pain.
Something very helpful I learned from the --- is to drink 1/2 to 1oz of water per lb of body weight. For me that means drinking like 20 big glasses of water a day. But it really helps with side effects AND more importantly makes sure you avoid getting kidney stones.
You can have gatorade, Crystal lt. stuff as water, too so it's not so bad.
Doc didn't tell me this.
I also take cranberry suppliments to avoid kidney stones. (Already was taking them for chronic bladder infections.)

Anyway...I didn't read this whole thread, so I appologize for any repeat info. Hope I was helpful to someone. And bluestream...thank you so much for the Top. idea...i think ;)

Keep in touch,
Jackie H. :)

BlueSteam

05-29-2006, 11:19 AM

If you need anything just let us know--it's been quite a trip and I'm still finding new little side effects here and there, but it is getting easier. I do admit there are days when I do wish I could just quit taking it. I love having the people on this board to turn to, they have been so great!! Angela

BrittleBones

05-29-2006, 11:47 AM

Hello fellow Topomax users! When this thread was started, way back when, I was kind of irritated that one little medicine could generate SO MUCH reaction on the board. :rolleyes: Every day I checked in there was that darn Topomax thread still alive and kicking!! :yawn: Little did I know that I would soon be more than grateful that people took the time to fill 17 screens with info on the drug. My pain management doc (who I saw last Friday) has changed my medications. He has given me a schedule to follow to start tapering down my methadone (I was taking 180 mg. per day). I told him that the Zonegran that I had been taking for nerve pain wasn't doing anything for me and that I had titrated down from 400 mgs per day to 100 mgs. per day and now would like to stop taking it all together. He was fine with that. His next suggestion was...(drumb roll please..) ....Topomax!!! Boy was I ready to talk about Topomax!!! I sounded like a walking, talking PDR. He was very impressed! So I'm going to give it a try. I started last night with 25 mg and will take 25 mg. twice a day for a week and then titrate up every week until I hit a therapuetic dose of 200 mg. per day. So far I haven't noticed any side effects other than a little light headedness. I'm PRAYING that I get the Loss of Appetite side effect as I'm at least 30 lbs. overweight from spending close to a year in a wheelchair while munching on steroids. So to finish up here, I just want to THANK ALL OF YOU for the endless chatter about Topomax. If it weren't for all the posts on the subject, I wouldn't have been as well versed on the subject as I was at my doctors appointment. All the best - KathyMac :wave:

JackieH

05-29-2006, 04:55 PM

Hi Again,

well, here we are together then. Don't forget the water tip --- as the water helps lessen the brain-fog & tingles you can get.

Angela, the relief you got from your cervical headaches was my inspiration. I'm so happy for you. I pray that the side-effects lesson for you as I've read they will over time. Hang in there & remember how bad those headaches can feel. I've had a constant 7-10 on the pain scale since going off the Gabapentin last month & I'm getting claustraphobic in my own head....coupled with the arm pain..arhg. I do know I could have a much worse life tho so I am grateful.

Keep in touch.

Kathymac....hang in there & keep us posted, K? I think I've lost 5lbs in 10 days on it...don't have a scale but the jeans needed a belt yesterday. (Not that this is a reason to take such a strong drug but if it takes my 30 off, I'll be glad for that too.) My appetite got less & less each day, btw.

Bye for now,
JackieH :wave:

BlueSteam

05-30-2006, 12:51 AM

Kathymac--I really hope it works for you, I really felt like I had been let out of prison when those headaches went away. I over-did it with some sanding and painting and they came back just a little for about two weeks. I was so afraid my dosage would have to go up, but things seem to be settling down again. Thank goodness. I will behave from now on. You know how spring makes you want to do things. How do you sleep on the steriods? I've been put on them for a short time and I feel like I am going to go crazy. I am jittery, dizzy, and I can't sleep. Add that to the topamax side effects--I should be in a nut house.

JackieH--Hi! I'm not sure what Gabapentin is, but when I get done here I will look it up. Honestly, right now water is the only thing that tastes good and even it is weird sometimes. Most food, I've noticed tastes like it's been overly salted to me. I've lost 10 pounds and holding in a month and a half. Some days I don't eat at all and my daughter has to yell at me, and then other days I still pig out. My mornings are still the most confusing for me. Maybe if I lay of the coffee it would be better. lol. But things aren't so bad. I am scheduled for an esi on June 5th, so maybe my pain will be better then. Aranger has helped me get over my fear of the esi a lot. Did you ever have one? I am thinking of you and I hope the topamax starts working. I actually had relief in my first week. A lot a people do have to go up to higher dosages is my understanding tho.

Please keep in touch, and let us know you are doing. Angela

JackieH

05-30-2006, 10:38 PM

Dear Angela,

I wish we could sit & have a bottle of gatorade together on the beach & chat. Wouldn't that be nice?
Forgive me, I cannot remember....did you have the acdf surgery for your neck? Mine was a dbl c5-7 w/bone from my hip on Jan.30th but has not helped the pain at all.
I've not had an ESI, however, I did have a cortisone injectionin my arm/shoulder a couple weeks ago for the right arm pain & it didn't do a thing for the pain either.
I sure hope the ESI helps you. I'm assuming its for your arm pain as the Top. has helped the headaches?

My biggest struggle right now is living with a constant 6-9 on the pain scale headache. It's driving me nuts! Waking up on the concrete pillow feeling every morning, holding my head in my hands & crying every night. I miss the Gabapentin(neurontin) which kept it at 3-6max.
When I read your comment about the Topamax taking your headache away totally I just had to try it. Also, I am happy to be losing rather than gaining weight.

You're right about the too salty thing. And it is good that water & healthy foods are what we crave more. I'm just so tired of all this pain. :(
My headache is almost averaging an 8 lately. I really can't function this way. I know the Gab. took a long time to work....started at 300mgs & had to go to 3600mgs to really get help. So I'm assuming I'll need way more than the 50mgs of Topamax I'm on just since Friday.
I'm trying to be patient. I see doc. on Friday & will ask for some marcain shots in my head which I've had & help for like an hour. Atleast I can go home & fall asleep happy for a while. :yawn:

How old is your daughter? Mine is 12. I have a 15yr old son also & hubby is very supportive. I just am no good to any of them like this.
I have a strong faith in my Maker & pray all the time for peace & mercy. 'Couldn't get through this w/out Him.

Please keep in touch, Angela. It's your relief that has given me so much hope for this drug & what lies ahead.

Take care,
Jackie :wave:

BlueSteam

05-31-2006, 11:48 AM

Hi JackieH!! I would love to be able to meet up with you. I remember writing (I think) about moving to this little town of my husbands and still 7 years later, really not having any friends here. Not anyone close, and I really love to be able to come to the boards and chat. We also live 17 miles out of town, so it's really lonely. I wish you could get rid of your headaches. I know how you are feeling. I don't know what to tell you to make them any better, as I tried everything I could. I did go thru a lot of ice!! I will tell you tho that crying makes them worse. I'm sorry. Life was really bad for me with those headaches and I do thank God for my children because sometimes I just didn't feel like I could do it anymore. I don't like to admit a weakness like that, but you probably know how I felt. I have that concrete pillow feeling all night long. Thought it was just me. How strange. I haven't had any surgery, my new pm dr actually just diagnosed me. My other dr all these months told me is was just a muscle problem. I have a couple of bulging discs in my neck and three in my lower back and ddd and athritis in back also. They also told me I've got athritis in my hips and knees also. Jeez I'm only 37. The pm said that surgery just isn't an option for me. The neck problem is effecting my arms tho. I can move my right arm and it will feel like I've been stabbed in my left arm! I did ask if the esi would help with the headaches and the pm didn't sound too positive about that. I would like off of the topamax. I do have a lot of lower back pain, but they aren't doing anything about that. The nerves kill my right foot--I was told that neurotin was good for that. Don't know why I'm not taking that. Why won't your dr put you on both of the med's?? There are a lot of people on the boards that take both the topamax and the neurotin. How long is your dr going to give the topamax a try? My guess would be up to 2oomg's. By then you would know. I've done so much reading--can you tell?

My daughter is 14--she is such a doll. She was so pretty last night and stood so proud. I felt bad tho, when it came time for her and another girl to get their diploma's-theirs were missing! The other girl cried, but my daughter laughed--they clapped for them. Poor things. I also have a daughter who will be 19 on the 7th and a 16 yr old son who lives with his dad. My husband really does love me, but is not helpful at all. I think thru-out all of my struggles he has handed me one cold washcloth. It is very hurtfull, and sometimes I think I would heal faster with more support. I don't know. But it hurts. I'm really glad to hear your husband is so supportive!!

I woke up Sat night with horrible pain in my head and thought my topamax wasn't working anymore and wouldn't you know--a toothache!! So I'm off to the dentist today. I am on work comp and did just lose my job over my injury and today I also lose my insurance. That was close. Lucky to get in. I doubt all the work will get done today--but it's start. I really don't like dentists. All the same, it's a relief that it's not my neck causing the problem this time.

I do wish we could chat! Please keep in touch--I'm here for you!! Angela

JackieH

05-31-2006, 05:40 PM

Hi Angela,

Congrats to your little girl! Good attitude. :D
I'm sorry you didn't get one of those servant-hearted type of hubbies...but trust me...from what I've heard, they are very rare. And none of them are perfect. :rolleyes:

I'm glad you're not having surgery. I wish I'd never had mine to be honest. All I have to show for it is more pain, a sore hip and a 4" diagonal slash accross the front of my once lovely neck. ;)

I think if the Topamax works on the same 2 receptors in the brain as the neurontin plus 2 others....that taking both might be over-kill but I would be open to it if down the line the Top. helped 1/2 way I'd try adding the Gab. again. If you only gain like 5lbs every 6 months on Gab...no biggy. But over 10 years you could end up huge w/out even realizing what was happening. I really like the Top. effect better. Even tho WHAT is with these dreams at night? Concrete pillow sleep is one thing & I take Lunesta. Since Topamax I've been having some weeeeird dreams & they seem SOOOO real. Do you?

Well, Angela, it must be hard being so far from town. I live in Canada but was raised in Los Angeles. I live in the wine country region here & it's beautiful but there are still plenty of people & places around. I do NOT miss LA at ALL!!! (Just moved here 2 years ago.)
Try to do like me & GET OUTSIDE for walks. When you were in your headache prison, did you find that putting your make-up on & getting dressed & out made you feel anybetter? It doesn't take the pain down from an 8 to a 7 type a thing but it does make you feel more alive which is very important. I'm only 42 & we are both looking at many more years. Our children need us. And we need to remember that there are so many SO much worse off. (Not to belittle our pain.)

Hang in there, Angela. I'll try to check back daily whenever possible. Did you look at the Topamax Trip yet?
Let me know.

I'll be praying for ya,
Jackie :wave:

JackieH

06-01-2006, 03:41 AM

PS....
I'm so sorry to hear about your toothache. Argh! Talk about insult to injury. I know sometimes the headache's so bad all my teeth hurt so I can relate a bit right now.
Hope it's fixed & at least your mouth is healthy. :D

BlueSteam

06-01-2006, 12:25 PM

Hi Jackie--I don't recall having any weird dreams---I sure did when I took flexeril tho. Bad dreams!! If I'm having any dreams now, I'm not remembering them. The topamax has made me sleep better, it took about two weeks--if I remember right. I do know someone taking the sleep med, I'll have to ask him if he has any strange dreams. Maybe it's the combo.

My visit with the dentist went well--sitting in that chair for three hours was horrible!! I am in so much pain today! Ugh!! I do have a slight headache, but I thought maybe I would. We weren't able to do all the work, but they said my teeth weren't in too bad of shape, so I was happy to hear that!! I'll just have a sore jaw for a few days. It will feel good just in time for the esi.

Surgery is such an iffy thing--some people it just doesn't work for and then others seem to do so well with it. I was almost relieved to hear I wouldn't be having it. Other than medications do they have any other options now for you?? In time that seems like a lot of weight to put on with the neutotin!! wow. I don't blame you for not wanting back on that. I am going to see if I can take the topamax earlier than I normally do, to see if I can funtion better or sooner in the day. I take it 12 hours a part right now. I guess that's the best way. Nine pm and Nine am. I want to try for six. I was told bedtime. I don't see what it matters.

I went to Canada for my senior class trip, 20 years ago this year! It was so beautiful!! I want to go back so badly. You are very lucky to live there. Montana is a great place to live also. I feel very fortunate to be here. Well, I really don't feel so great today, everything hurts--just can't sit here today. darn it. Better go. I hope your headaches aren't too bad today. I'm glad your here. Just wish it was for differant reasons. Take Care--hope to talk to you tomarow. Sorry about the spelling errors--topamax side effect!! I'll be praying for you also. Angela Ps. What is the topamax trip??

JackieH

06-01-2006, 03:21 PM

Hi Angela,

'Glad the dentist is nearing the end. :D

-- Please do not advise users how to find other posting boards --- HBMod07

Montana is beautiful, too. I think the Robert Redford/Jennifer Lopez movie, "An Unfinished Life" just now on DVD is supposed take place in Montana, only... guess what, they filmed it in my province...about an hour north of where I live in BC. It's not a bad movie if ya haven't seen it.

OK...so here's another strange Topamax side effect. I'm tired but wired at the same time. (BTW...my headache is only a 7 right now when it's usually an 8 this time of the morning. :cool: 'Still wearing my sunglasses tho.)
Anyway, I find myself having this mean little personal trainer in my head. My body is tired & weak & IN PAIN but the impy little voice says, "Get off your post surgical butt & do that work-out video....get outside & walk to the top of that steep hill....chop all the veggies for that salad even tho your right arm is about to fall off from the pain~just do it...do it...do it!!!" :mad:
OK...so It's not one of those chipper let's turn over a new healthy leaf moments in life. However, extra muscle aches aside, the feelings of getting back into shape again, losing the extra pounds, craving healthy foods & WATER instead of diet coke it just all feels so right.
Even tho it's like there's a womens' prison guard with a whip in my head telling me to get healthier SO I'LL FEEL BETTER DANG IT!@#@JK!@L#$!!!!
j/k ;)
It's the only thing keeping me possitive about the Topamax since I've not had the pain relief from it yet. (And wouldn't expect to after 10 days anyway.) But the hope of actually become athletic again...that's an awesome hope.
Tell me Angela, has this drug had you excercising more? Did your 10#s come off just from not eating or have you been at all more active from it? I know you're hurting...me, too. (But tell that to the prison guard lady.)

Talk to you soon.
Jackie :wave:

DogMom22

06-02-2006, 01:55 AM

Welcome Kathy and Jackie. A few weeks ago I promised I would update how I was doing with topamax. I went on it in March for migraines and back pain (undiagnosed) presumably nerve pain. I tirated up to 100 mgs and just couldn't function - dumber than a box of rocks. Went to 50 mgs once a night and was still having problems and then one day noticed that I was thinking clearer, words were coming out right etc. I have been at 50mgs for 5 or 6 weeks. I have almost none of the negative side effects and my appetite has returned a little bit but not much. I will get the tingling fingers and toes when I don't drink enough fluids. I have lost a total of 12 pounds without trying. I am very rarely hungry and I stop eating when I feel even a little bit full. My migraines are better that they were before but I still get them. I no longer have daily headaches. Topamax has alos helped my back pain because when I forget to take topamax the next day my back pain is not controlable with vicodin. Topamax also helps my foot pain from a failed foot surgery - which is definetely nerve pain. The plan with my doc now is fo me to go to 75mg once a day and later to 100mg since 100mg is the amount that generally resolves migrains. But I decided to stay at 50 for another month and enjoy feeling somewhat normal for a while.

Kathy - the weight loss effect kicked in for me when I was about 2 to 3 weeks into taking it at about 75mgs, at first I had a few days where I was so 'dumb' I forgot or just didn't know I was suppose to eat. From there it turned into and continues to be very subtle, I noticed I wasn't hungry and that I became satisfied sooner when eating - now I often don't clean my plate. I have used the 'cues' to lessen the amount I eat. Sometimes I have to remind myself to eat something.

JackieH

06-02-2006, 04:17 AM

Hi Dogmom,

...1st a quick comment to HBMod07....'sorry about that. I promise not to mention other boards again. I just learned some valuable info from those folks but I understand the rule so I'll abide. :)...

OK...so I'm so happy to hear that your side effects mellowed & you hung in there. YAY that your pain is being helped! Congratulations!
Angela's relief plus yours are such an inspiration. I'm going nuts w/this headache. I am determined to get to atleast 100mgs & give it at least 8 full weeks before I even think about going back on neurontin. The weight loss is the one possitive in all this suffering right now.
Thank you so much for sharing your story DM. I really appreciate it. Please continue to post updates. I will also.

& What wonderful news that it's helping with the foot nerve pain! YAY!!!! :D
You had a failed surgery there? I can relate from my recent neck surgery. My arm pain is just as severe as it was prior to surgery. :confused:

Keep drinking that water...& some Gatorade, too...you need some electrolites once in a while. (I also like Crystal Lite as some of my water....makes life more interesting.)

Bye for now.
Jackie H :wave:

BlueSteam

06-02-2006, 11:59 AM

Hello Everone!
DogMom--I've been wondering about you!! I'm glad you are doing a little better on the topamax. I have some really bad foot pain--maybe in the end it will help that too. Forget to eat? You're right---and you are not alone there!! Any way I'm glad you are doing ok. Glad to hear from you!!

Jackie--I'm sorry I got you into trouble there--didn't know what was going on. :eek: When I was having my headaches, excercising was out of the question as it really did make them worse. And if I woke up without a headache :D and did just a little bit of anything--then I got one. After I started taking the topamax I felt the same way you do!!! I think you may start to feel a little bit better and you may have just a little more energy and yep, there is some nasty person there with a wip telling you to get moving. I would slow down a little tho and let your head have a chance to get feeling better so it doesn't keep throbbing. How about just doing some stretches to keep your muscles limber for about a week? See how your head feels then? I am really serious--you should try this!! I didn't do much the first couple of weeks. It all came after that. I was forgetting to eat and then not being able to make it all the way thru a meal. I did go thru about two weeks of craving cake!! I was never a cake eater--I went for the ice cream. My daughter will question me every day now on what I ate and when---then I get yelled at. She will threaten not to eat if I don't. We don't want that. Once my head felt better I was able to start moving a little more. I find that I am over-doing it tho as my neck will tell me I am. So will my arms and lower back! I seem to have a lot of other problems too that slow me up, but I hate so sit still. So after nearly two months now, I think it is a combo--but mainly not eating as I still can't do too much physical stuff.

I found out some more info on some of my other problems yesterday by reading a little bit of another thread, so I am going to try to do some research today. the topamax makes concentrating kind of hard sometimes. Have you ever heard of RSD?? It may explaine a lot of things.

I am so glad your pain is down a little today--it's a big start. Take it easy and don't do anything extra. Let me know how you did. God Bless. Angela
Angela

BlueSteam

06-02-2006, 02:09 PM

Jackie, Boy I can't seem to get moving today. My husband told me I am probably so stiff from being so tense in the dentist chair. I never thought of that. I've been researching the RSD today. How scary. I took a trip today---"BanditandMe"-that's one of my daughter's dog's. Thanks for the info on headaches and migraines. There is so much to learn! I was wondering if you have had any vision changes? I keep forgetting to ask. Hope you are taking it easy. Talk to you tomorrow.

JackieH

06-02-2006, 03:41 PM

Hi Angela,

No vision changes, but I my eyes do feel a little watery & it feels sometimes like it's a sinus headache (which it's not...had the x-ray long time ago,) in that my nose & throat have that little bit of a "I might be getting a cold" thing. Does that make sense at all?
Anyway, I'm not sure if the eyes watering is from the Top. or not & it's so mild I hardly notice it anyway.
You know bad eye pain w/topamax is not a good thing, right? Hope you're OK.

I really appreciate all the advice about taking the excercise bug easy at first. I will do that. I'll have a chat w/the warden.

I'm sorry you're having a slow day. That can only mean tomorrow will be better, right? My headaches a 7 right now & I'm getting ready to go see the doc. I'm going to discuss to Topamax progress & (btw I raise the dose to 75mgs today) & talk to him about getting a TENS unit.
I also want to ask him to up my Welbutrion cuz I've been really snippy w/my family on the Top...especially my poor husband. (He's put me on a really low dose of that prior to surgery. I don't even know if it does anything but I'm willing to try in the name of sweetness.)
(And speaking of sweetness..watch out for that cake :D )

Better run....
Talk to you soon.

Bless your day,
Jackie :wave:

JackieH

06-03-2006, 07:25 AM

Hi Angela,
in case I don't get a chance, I just want to say I'll be praying for you on Monday that your ESI goes well & that the medicine coats those hurting nerves like a healing balm. Close your eyes on the table & imagine yourself laying on a beach in Maui. :cool:

My doc was very sympathetic today, upped the Welbutrin(happy pills) & gave me an Rx for some pain suppositories (which my pharmacy was out of until Monday). He said all his other patients have quit the Top. before it has a chance to help them...too wimpy for the side effects I guess. :D Anyway, he said he knows I have a lot at stake & he sounded proud of me. It made me feel like I was making the right choice.
I'm up to 75 today. Ya know, I didn't tell ya...my worst s/e is probably that my lips are so sore & red they are almost blistering. Today I spent $20 on every kind of blistex & chapstick made.
My little sister is marrying a guy she was on a soap opera with a few years back. (She's an actress in Hollyweird.) I'm going to the wedding in 9 months...the very look that creeps me out the most, I might have....an anorexic figure with lips that look like I had collegen injections!!! :rolleyes:
I don't even want to think about it.

Doc stands by statistics that after patients hit there theraputic dosage the s/e's begin to diminish over time to almost nothing. Here's hoping. :confused:

I hope you're able to have a pleasant weekend.
Rent a funny movie or 2 & get some good laughter endorphins going!

Bye for now,
Jackie :wave:

BrittleBones

06-03-2006, 09:48 PM

Jackie - are the sore lips and cracked lips caused by the Topomax? I started taking Topomax 7 days ago with 25mg in the morning and 25mg in the evening. Today I went up to 50mg. in the morning and 50 mg in the p.m. So far today I've noticed that I'm wound up tighter than a clock! I feel like someone slipped me a pep pill. Also, can it be possible that the medication could be helping my pain after only 1 week? I ask this because today I feel a huge decrease in my pain level and that's taking into consideration that I'm being titrated down on my methadone. I didn't notice too much of a decrease in pain all of last week when I was on 50mg. per day; but today at 100 mg., it seems very different. I'm not having any "dumber than dirt" moments yet....although I'm sure they will come. The doc wants me to work up to 200mg per day within 4 weeks of starting the drug. The other side effect that I think is finally happening is the decrease in appetite and I couldn't be HAPPIER@ :bouncing: :bouncing: The weight I put on while sitting in a wheelchair for almost a year waiting to get a new hip may finally start to come off!! I also noticed last week that I was seeing little black "floating" dots that would pass in front of my eyes. Nothing very severe - but they were definately there. They seem to have gone away now. Anyway - I hope your sores get better and that the Topomax improves your pain. All the best - KathyMac

JackieH

06-03-2006, 11:12 PM

Hi Kathy,

Congratulations! That's awesome!!! Your doctor has started you & raised you twice as fast as me & I think most, actually. But if you can take it & it's helped then, great. :D You may not need to keep going any higher. Why bother if you have the pain relief with the lower dose...unless it's only partial. If it's enough...then stick with the lowest dose possible.

I'm on my 15th day & just began 75mgs yesterday. My lips aren't really cracked or dry on the outside, it's almost like they are burning just beneath the surface. However, I am finding that blistex ointment is soothing them & am confident it will subside in time. I had this same side effect when I took Acutane for acne when I was 18, years ago. :confused:

I would ask your doc about your floaters/auras? Doesn't sound serious but you should talk to him about it. And I share your joy about the weight loss. I too gained weight from all the medical problems & it really adds to your sense of unwellness if you are used to being in shape. (Although I've been out of shape for almost 10 years now.)

I'm so happy for you guys that are getting pain relief from the Top.!!! It really gives me hope! :)

Take good care & keep posting,

JackieH :wave:

BlueSteam

06-04-2006, 12:24 AM

Hi there, I do get tingly, burning feelings in my lips and sometimes my nose. I will say too, tho that I have been using Blistex like it's free. I honestly haven't noticed any pain relief from the topamax except what I get for the headaches---I will not complain about that!!! I've heard a lot of people say they have gotten a lot of other pain relief from it and I"m so glad KathyM is doing so well so far.

Jackie--I'm glad your dr visit went well--my dr also said most people don't give it a chance, I was also determined. I still have my moments. I'm glad you can take the wellbutrin!! My dr tried putting me on it and two weeks later I had a serious allergic reaction. I guess all the signs were there all along, but my dr kept thinking I would just get used to it. You should have seen my face, it swelled up like a basketball!! I had hives everywhere. I guess antidepressants work well with nerve meds for pain. Unfortunately I don't tolerate the antidepressants very well.
I'm sure you will look beautiful at the wedding and best of all have no headaches!! don't worry!!

I started having lightning like streaks in my vision a few weeks after starting the topamax. When I mentioned it to the pm he told me to see my eye dr. I just did the other day and he said my eyes are fine, and feels that it is a side effect of the med and was a little upset with my pm for not paying attention to all of the side effects of a med. I think it might be getting a little better. Jeez what next.
I hope you don't get too many new side effects with the new dose, just keep in mind that it will get better and remember to drink a lot of water. If nothing else I will be sure to write on Monday am before my esi. We will probably leave home around 12:30. I am really getting nervous, but I keep telling myself that it can't be worse than the mylogram. I did tolerate that real well.

Have a great weekend!! Angela

HBMod07

06-06-2006, 11:03 PM

Please refrain from continuing long threads, this slows down the servers when trying to access the pages, making it difficult for everyone. Keep threads down to a reasonable amount, then start a new one to continue the subject.
Each member needs to start his/her own thread for their own issues.

Thanks for your help.

HBMod07