HealthBoards (
-   Pain Management (
-   -   Calling all Topamax Users (topiramate) (

dixiepeep 04-12-2006 05:49 AM

Re: Calling all Topamax Users (topiramate)
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 05:54 AM

Re: Calling all Topamax Users (topiramate)
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 05:18 AM

Re: Calling all Topamax Users (topiramate)
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 08:47 AM

Re: Calling all Topamax Users (topiramate)
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 09:35 AM

Re: Calling all Topamax Users (topiramate)
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 08:03 AM

Re: Calling all Topamax Users (topiramate)
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 08:21 AM

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

Re: Calling all Topamax Users (topiramate)
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 07:26 AM

Re: Calling all Topamax Users (topiramate)
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 07:48 AM

Re: Calling all Topamax Users (topiramate)
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 02:13 PM

Re: Calling all Topamax Users (topiramate)
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 03:55 PM

Re: Calling all Topamax Users (topiramate)
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.


DogMom22 04-21-2006 04:26 PM

Re: Calling all Topamax Users (topiramate)
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 04:27 AM

Re: Calling all Topamax Users (topiramate)
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 09:14 AM

Re: Calling all Topamax Users (topiramate)
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 05:47 PM

Re: Calling all Topamax Users (topiramate)
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 04-26-2006 10:04 PM

Re: Calling all Topamax Users (topiramate)
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 06:12 AM

Re: Calling all Topamax Users (topiramate)
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 12:37 PM

Re: Calling all Topamax Users (topiramate)

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.[/QUOTE]

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 12:57 PM

Re: Calling all Topamax Users (topiramate)
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.

All times are GMT -7. The time now is 10:09 AM.