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-   -   Calling all Topamax Users (topiramate) (https://www.healthboards.com/boards/pain-management/371563-calling-all-topamax-users-topiramate.html)

gingerweezie 03-11-2006 06:14 AM

Re: Calling all Topamax Users (topiramate)
 
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 04:12 AM

Re: Calling all Topamax Users (topiramate)
 
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 12:49 PM

Re: Calling all Topamax Users (topiramate)
 
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 12:57 PM

Re: Calling all Topamax Users (topiramate)
 
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 04:02 PM

Re: Calling all Topamax Users (topiramate)
 
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 06:14 AM

Re: Calling all Topamax Users (topiramate)
 
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 06:24 AM

Re: Calling all Topamax Users (topiramate)
 
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 07:00 AM

Re: Calling all Topamax Users (topiramate)
 
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 02:38 PM

Re: Calling all Topamax Users (topiramate)
 
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 08:00 AM

Re: Calling all Topamax Users (topiramate)
 
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 08:09 AM

Re: Calling all Topamax Users (topiramate)
 
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 05:37 PM

Re: Calling all Topamax Users (topiramate)
 
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 08:06 AM

Re: Calling all Topamax Users (topiramate)
 
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 09:43 AM

Re: Calling all Topamax Users (topiramate)
 
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 01:25 PM

Re: Calling all Topamax Users (topiramate)
 
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 07:12 AM

Re: Calling all Topamax Users (topiramate)
 
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 07:40 AM

Re: Calling all Topamax Users (topiramate)
 
[QUOTE=BowlingWendy]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.[/QUOTE]

dixiepeep 04-11-2006 07:43 AM

Re: Calling all Topamax Users (topiramate)
 
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 01:31 PM

Re: Calling all Topamax Users (topiramate)
 
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 02:34 PM

Re: Calling all Topamax Users (topiramate)
 
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!


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