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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 11:25 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 01:42 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 01:57 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 03:26 PM

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

April414 03-06-2006 08:55 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 08:45 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 02:07 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 08:18 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 01:35 AM

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

Blasterboy 03-08-2006 07:41 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 07:50 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 08:24 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 08:45 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 09:57 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 12:50 PM

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. :)

Blasterboy 03-08-2006 01:39 PM

Re: Calling all Topamax Users (topiramate)
 
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 04:34 PM

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

Re: Calling all Topamax Users (topiramate)
 
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 08:19 PM

Re: Calling all Topamax Users (topiramate)
 
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 02:39 AM

Re: Calling all Topamax Users (topiramate)
 
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.


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