Fibromyalgia Community
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667923 tn?1421466324

Taking Lyrica and blowed up like a balloon,going to try TOPAMAX

Hey to all,
     I am so miserable and bloated that I can't breath. I have been on Lyrica for 2-3 yrs. It works great for the nerve pain, but then you get so huge that my size 4's  are now size 16's and really 18 and I am tired of it. I HAVE PUT ON 60+ LBS...WOW.
      I heard of this medicine called Topax, it is for Fibromyalgia,nerve damage and it actually causes weight lose..finally. I am going to ask my doc. Mon. for it and give it a try. I wonder if you can tapper off of Lyrica and take the Topamax at the same time. I have been on 150mg. of Lyrica for so long that I take it every 6-8 hrs. ..no joke, my pain is so intense. I can tolerate pain well, but this is ridiculous. I also just found out I have a Chiari Malformation and am sure a lot of my pain is from it. I wonder what you take for that...(heavy sigh...great more meds) I might  have to have brain surgery. That sounds inviting...hmm!..
      I am on Fentayl 50mcg.,but they want to bump me up to 75mcg and I didnn't want to, but I had to try something because my pain is through the roof. I asked if they would just change my breakthrough meds because I am just getting an immunity built up to them. I have been taking the Norco 10/325 for 5 yrs.(they put me on them right after surgery because of the pain). I think this would be the perfect med. balance for me and that would be to stay on the 50mcg. patches, tapper off Lyrica and start Topamax for Fibro and for the chira malformation headaches, go down on my breakthrough med of Norco 10/325 to Lortab 7.5 and have to stay on my 1mg. Xanax for all the spasms/tremors..unfortunately...but that I think would work. I hope my doc sees it the same way.
     Have you guys heard of Topamax?  I have been doing some serious reading and it sounds great. You don't have the weight issue that you do with Lyrica. You ought to give it a try. I know I am ...Lord Willing. I think he would do that for me since I just can't breath. I asked for a fluid pill so I could try it and I didn't get it and I don't undestand that. He seems to think I have an infection in which is possible since i do keep nasal congestions and some in chest.
     All of my weight is right underneath my breast area and I can't sit for long periods or stand long either. I just feel like I am smothering. If I just try to lay back but elavated I can stand it and then I get depressed because that is all I can do and just try to sleep in which is almost impossible with nerve damage. It decides when you sleep unless you take something to sleep. I checked on Elavil and didn't like the side effects at all. I can't remember at the time just what there are, but I remember they didn't sound to hopeful for me.I will check it out again and get back with side effects and look at it again. I don't sleep and my husband is always telling me that I need to sleep...yeah...it would be nice. When I do I only get 30 min. to an hour and if I am lucky I can get a little more. My doc doesn't want to give me Klonopin in which I have taken before and it seemed like I did sleep more. I hate to feel like I depend on the Xanax to sleep, but that is all I got. I can't take flexeril because if makes me barf. It just doesn't work I guess it is with the mixture of what I am taking, but the Klonopin .5mg was really nothing and it worked. Maybe he will this time when I ask him @ it again..or should I? I just want to have a normal life and enjoy some things with me son...like going to his ball games or watch a good movie with him without being in agony.
I will check back to see your views on Topamax if anyone has tried it. You take care and always GOD BLESS
16 Responses
Avatar universal
I know this girl who just started taking Topamax for headache relieve and in less than 2 months she has already lost 32 pounds.

I couldn't take the Lyrcia, beause i felt as though i wasn't breathing right on it, and my hands and feet swelled up so much like a balloon. it made me scared.
975514 tn?1325001538
Hello and welcome,
I used to take Lyrica (an anti-seizure medication) for intense fibromyalgia and nerve pain and had very similar side effects that you speak of. I put on weight and became extremely lazy. I chose to switch to Topamax and have been taking it for over six months. I have lost about 25lbs since I quit taking Lyrica. (I did take Neurontin in between the two medications and lost about 5lbs when I switched to that one.)

There are a couple of major differences you should realize though before switching to Topamax though.

*It is FDA approved only for Migraines and Epilepsy, so if your doctor doesn't code the prescription correctly, your insurance may not cover it. If they try to code it for "chronic pain" or "Fibromyalgia" it could get rejected.

*It was first a very strong Epilepsy medication used to treat the worst types of seizures known as "grand mals" or tonic clonic," so the medication is very potent. Lyrica and Neurontin are anti-seizure medications too, but they are only useful as adjunct medications if used for Epilepsy, which means it has to be couple with something else to work on grand mal seizures.

What does this mean to you? It means that Topamax may have more initial side effects in the beginning of the therapy than Lyrica or Neurontin.

*Many doctors think that Topamax is just as tolerable as Lyrica, so they might start you at a high dose right off the bat, which is a HUGE mistake!!!! The typical dose for migraines is 100mg. The best dose for nerve and Fibromyalgia pain is between 150mg and 200mg, but you can't start at that dosage. Topamax must be increase in doses of no more than 25mg per week to avoid side effects. If this is done, the medication is a highly effective, highly tolerable option for migraines and pain and you want to let your body tell you where it is working at it's most optimal dosage too because everyone is different.

The most common side effects I had went away in about 6 weeks. They were insomnia, tingly fingers and toes, and loss of appetite. I also had a little bit of confusion for about 2 days on the days when I would increase my dose. This would pass quickly though. Also, soda tasted flat for about a month, but that too went away and now it tastes normal. I hope this information helps you. Feel free to ask any more questions you might have. Thanks.
681148 tn?1437665191
Good information about the insurance coverage and Topamax.  The neurologist hasn't decided to try Topamax as of yet, but since I have migraine disorder, he can certainly label its usage as such since that's what he is treating me for.  That's not where he is headed yet, though.
667923 tn?1421466324
     I want to thank you for you information on Topamax. I sure hope that my doc puts me on it. I am so greatful for the help he has given to me already. It sure is hard to find someone that will take care of you these days. I went to a NL @ two months ago and he run a few test like a CT Scan of head and an MRI of Lumbar, also EMG's of ams and legs. In the CT it showed what was called a Venous Angioma, in which he said I was probably born with but it still creeps me out.
Hey guys I didn't realize the time, gotta go to see Dr. this afternoon. Got to get myself together. I will be back to continue our discussion.
'                                          Thanks and always...GOD BLESS..Karen
975514 tn?1325001538
There is one thing I should mention though. Not everyone loses mass quantities of weight on Topamax. Some people do not lose at all, but the nice thing is that most people do not gain while taking it. If you have healthy eating habits your likely to lose more. Good luck to you and let us know how things go.
Avatar universal
Get off Lyrica, it's awful and that pain patch has so many side affects.  Topamax is wonderful and a side affect is WEIGHT LOSS. With diet and exercise I've lost 20 pounds while on it.  Being a chronic pain patient suffering years with FM I've not been able to lose any weight until topamax. I've taken Lyrica, fetanyl, and just about any other pain med you can think of. There is hope so hold on and take that topamax. Helps head aches, some nerve pain and great side affects.... Best of luck
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