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

Blasterboy 03-06-2006 10:25 AM

Calling all Topamax Users (topiramate)
 
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.

curiousforever 03-06-2006 12:42 PM

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

Re: Calling all Topamax Users (topiramate)
 
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 02:26 PM

Re: Calling all Topamax Users (topiramate)
 
Anyone been on a dose over 100mg?

April414 03-06-2006 07:55 PM

Re: Calling all Topamax Users (topiramate)
 
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 07:45 AM

Re: Calling all Topamax Users (topiramate)
 
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 01:07 PM

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

I have had a good result using topamax as well. I sometimes have problems word finding but that's about it. I thought the weight loss for me was a bonus as I'm overweight...I like it and have been on it for 4 months....

Everyone has a different experience on it some have horrible side affects others not so bad.

I take 100mgs a day.

Sunnycal 03-07-2006 07:18 PM

Re: Calling all Topamax Users (topiramate)
 
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 12:35 AM

Re: Calling all Topamax Users (topiramate)
 
Sunny, did he Titrate up to the 150 dose?

Blasterboy 03-08-2006 06:41 AM

Re: Calling all Topamax Users (topiramate)
 
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 06:50 AM

Re: Calling all Topamax Users (topiramate)
 
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 07:24 AM

Re: Calling all Topamax Users (topiramate)
 
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 07:45 AM

Re: Calling all Topamax Users (topiramate)
 
davetheplantman, do you take any other meds to treat the nerve pain on top of this?

curiousforever 03-08-2006 08:57 AM

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

That's what I was taking it for - nerve pain. I'm taking lyrica now - but am not sure it's really m aking a difference.

When I had both ulnar nerves impinged I took neurontin, depakote, and tegretol. I think that combination (highest possible dose of neurontin...) worked better than anything else I tried.

davetheplantman 03-08-2006 11:50 AM

Re: Calling all Topamax Users (topiramate)
 
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. :)


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