I have been prescribed Lyrica and couldn't deal with the weight gain, bloat, and tiredness/laziness that it caused in me. Topamax which is used for severe Epilepsy and Migraines works just as well for Fibromyalgia and Neuropathic pain as Lyrica I have found.
There are a couple of key things to note with the drug however:
First, you must be titrated slowly (no more than 25mg per week increases) because of side effects like nervousness and insomnia, hand and foot tingling and loss of appetite. These side effects do go away after about 6 weeks. By increasing slowly your body has a chance to adjust.
Many inexperienced doctors make the mistake of increasing people WAY too fast. (I think they believe Topamax is tolerated just like Gabapentin or Lyrica.) Because of this their patient's side effects become unbearable to the point where the person gets confused, panicky, anxious and just plain fed up with it all and quit the medication before the benefits are made clear. This doesn't happen when the medication is increased slowly.
Second, you need to be at 150mgs or more to get pain relief benefits. You may start to notice relief of your migraines at as little as 75mgs, but to get the full benefits of the pain relief and of any neuropathic pain, you have to be at a higher dosage.
One thing to note is that most people will lose weight on Topamax. Those who have good eating habits when they start Topamax, will lose the most. Those who have the worst eating habits will lose the least. The average percentage I think it 3.5% of your body weight. I have lost about 20lbs, which is 15%. I was an avid Weight Watchers member before Topamax. I know many people who weren't and only lost a few pounds. It just depends on your habits. The one thing is for certain though, this med is not like Lyrica- it's not likely to make you gain weight!
Thank you for the information. I have FMS and I see my neurologist soon. I see him for chronic migraines. I will ask him if he thinks Topomax might be a good idea. I'm leery about trying Lyrica myself, because I am very sensitive to pharmaceuticals, and I've heard a few bad experiences about it. I've heard positive reports, too, but since my cousin and I have so many similarities in our FMS/MCS symptoms and she had bad experience with Lyrica, I have good reason to be fearful of even trying Lyrica. Since these migraines are so bad for me, I think I will consider Topomax.
There are always pros and cons to every medication. Everyone's bodies are different, so it's nice that there are alternatives out there. Lyrica wasn't completely a dud for me, in fact it was quite effective for pain for me. It just cause me to feel bad about myself after awhile when the pound started packing on and I became extremely lazy. I already have trouble with energy. Lyrica made me even more tired. Topamax actually gave me energy.
Yes, I sure understand that we all respond differently to these medications. Otherwise there would be a one size fits all type of protocol for FMS. I just know how sensitive to medications, so I know that if there are a lot of people with bad reactions to something, like what I've been reading about Savella, then I know I should steer clear. I don't need something that's going to cause me to pack on the pounds and make me more tired. And, since I have chronic migraines, I can ask my neurologist what he thinks about Topamax before I make any decisions about trying it or not.
Tried Lyrica, gained weight and my vision was blurry. It was bad. My friend told me about topamax. It's wonderful. Helps headaches and I've lost weight. I'm exercising and eating right. We FM people need a break and this is the first one I've found in a long time. You are so right about ramping up though. I wasn't told that at first and I gave up on it. My friend was the one who made me aware of that. Good luck.
I have FM. I have been on Lyrica for two years. i have put on alot of weight. My family Doctor put me on Topamax. I have been afraid to take it because of the bad side effects i have heard about it. The Lyrica helps alittle, but not that much. The only thing is my pain doctor has me on the Lyrica, and family doctor gave me Topamax. I am afraid to take both of them. Sounds to me like the Topamax is alot better, He put me on the 25 mg twice aday. Should i stop the Lyrica and just do the Topamax?
I am on neurontin and fironol (sp?), neurontin for nerve pain and the fironol for migranes. My question is this.....would the topomax possibly replace the 2 meds I mentioned? The fironol does not touch my migranes a lot of the time and I have read on here that the neurontin can be used as needed.
I am asking this forum as many times the folks that actually have FM or whatever know better than most docs what works.
Hello to both of you and Welcome!
I always recommend following your doctors instructions, however, I do believe that some doctors do not have a lot of experience prescribing some medications- especially those that are new or those that are usually prescribed by specialists like Neurologists or Rheumatologists. I think it would be fair for you both to have a conversation with your doctor about your concerns and see how they respond. Here is my input in regards to your questions:
I switched from Lyrica to Topamax completely mostly because of the weight gain and cost. Lyrica and Topamax are both anti-seizure meds and do not have any major interactions, but I understand your apprehension. Also, side effects from Topamax are most crippling usually when you increase too fast. I hope your doctor didn't place you on 50mg right off the bat??? That dosage is sure to give you some discomfort. I would start off taking only 25mg for the first week and then the second week go up to 50mg.
I've been on the med for 8 months. The first 4-6 weeks were the most difficult to get through, but the medication has been one of the best I've ever taken. It's very important for you to increase only 25mg per week. I've also lost a lot of weight. If you are interested in tapering off of the Lyrica and utilizing the Topamax alone I would have a talk with your pain doctor about it. The optimum levels for pain are between 150mg and 200mg. I am currently at 175mg. You may be able to taper off the Lyrica and ramp up on the Topamax at the same time and have your pain doctor take over the prescription so that you can get a stronger dosage- 50mg in clinical trials wasn't even strong enough to help migraines.
Fironol??? Do you mean Fibronol? I just Googled it and it looks like a supplement. Am I right? I am not familiar with that med/supplement. I do know that Topamax is FDA approved to treat Epilepsy and Migraines and in my opinion it's rather good at warding off migraines and at higher doses it does help with pain too. Neurontin and Topamax are both anti-seizure medications, so they are in the same class of meds. They have similar mechanisms of action.
Oh ok. Sorry I goofed that one up didn't I. I have never taken Fiorinal, so I can't really comment on it's effectiveness. You may be able to get away with taking just the Topamax alone, but you'd have to be at a high dose for pain relief as well as migraine relief. You would have to try it and see how your body reacts. I hope this helps.
What would one say is the max reasonable dose one could take for FMS and Migraines?
If SWIM already takes 300mg Topamax, originally RX for Migraines years ago, could an INCREASE in dosage prove beneficial to SWIM who has been RECENTLY DX with FMS? Or is this just wishful thinking?
Thanks for your answers. I usually am not clear when I ask questions. I will try to be a little more clear :-)
I take metroplol 1x for high blood pressure
zoloft 1x for depression, anxiety
gabapenton 3x for pain
fioronal as needed for migranes
soma as needed to help my muscles relax
zocor 1x at night
ultram as needed
plus my supplements
Calcium / magnesium
vit c and e in a gelcap
and for the last week flagly 3x and augmentin 2x for bacterial colitis.
I was just so sick of all the pills I was thinking that if topamax could maybe do the job of the ultram, gabapention, fironol and maybe even the soma.....I would be taking one prescription instead of 3 or 4 of them.
The muscle & joint aches and pains are just about getting to me, I was actually diagnosed by a rheumy this past year but my PCP mentioned fibro about 5 or so years
It always seemed like something different was hurting and I felt (still do) like a
hypochondriac or a drug seeker LOL.
Thank You so much for the info!! I want go back to my pain doctor till Feb. I have been coming off of the Lyrica. I thought i would do this first. Then when i go back to the doctor in Feb, I will question him about it. The Lyrica has really put alot of weight on me. I do feel bad about myself. I have gotten to where i do not care about myself, how i look or dress anymore, cause i do not even want to get out of the house. I have never been this big before, not even when i was pregnant with my daughter. I am about 5'4" tall and weight is about 176, so now you can see why! The Lyrica has put about 35 pounds on me. I would love to try the Topamax. He had me taking two 25mg at bedtime. I did take one 25mg one night cause my head was hurting bad. Is Topamax best to take durning the day or night? I think i will try 25mg once aday for a week then go up to 50mg the next week, then stay on 50mg for awhile to see what that will do. I hope this will help me. Thank You again for the info. I can use it.
This is the first I'm hearing of Fioronal. It's for migraines? I'm having a hard time focusing--does this one have an NSAID in it? I believe my neurologist is planning on prescribing a beta blocker for the migraines themselves. I hope it helps. He hasn't said anything about Topamax. I sort of wish we could try that, since I need the help with the FMS, too. But, he did say that migraines are a life long illness one is born with, so we may get to that later.
Unfortunately, Fibromyalgia often requires a "cocktail" of medications to control symptoms, so you may be able to cut back on some of your medications, but there is a possibility that you will still have a need to hang on to some of them too. Since Fioronal is for migraines and Gabapentin is very similar to Topamax there is a strong chance that you would be able to get rid of those medications if your body responds well to the Topamax. I take Soma as well as Topamax, so my guess is you may still need that one at least occasionally. Again, it's really hard to tell how your body will react. You would have to discuss this with your doctor and go through a trial run and see if it works for you. Good luck.
How bad were your fibromyalgia symptoms when you started Topamax and did you really see a big improvement? Wondering if I should try it again, on 400mg given by accident had brutal hallucinations, chest pain, breathing trouble, no concentration.
Hello and welcome,
I am so sorry (and appalled) to hear that you were placed on such a high dose right off the bat. I hate to ask how this type of thing happened to you??? I can totally understand why you would be fearful of trying it again.
I was in pretty bad shape when I started Topamax. I was in severe withdrawal coming off of Neurontin way too fast. Also I suffer from Fibro, plus scoliosis, DDD, degenerative facet arthritis of the spine, nerve damage of the spine, plus a failed shoulder surgery and a whole bunch of other odds and ends. I am in pain daily. Topamax helps a lot with my migraines and slightly with my nerve pain. I started at a low dose (25mg) and SLOWLY ramped up to 175mg. Doing it this way helps to avoid these horrible side effects you went through. I do take an NSAID and a muscle relaxer as well. I hope this helps you. Take care.
I had spinal surgery 6 months ago, sufferered from Anxiety and now depression. Was taken off Ativan and Neurontin in a hurry for Surgery. Pain has been horrible every since. Now trying Cymbalta again and am on Remeron and sleeping pill to sleep. I can not walk on my own, not just dizzy but the floor and walls move. Some of it is from anxiety some from the Topamax.
I have been on Lyrica for exactly one year and have gained 40 lbs!! I told my doc this morn that I had taken myself off of it. He has now switched me to a trial of Savella.He said that most people only gain 5 lbs. But I told him he has known me personally for 15 yrs and that he has to remember that 9 yrs ago I had a gastric bypass and lost 175 lbs and have kept it off and even lost too much at times and was diagnosed with malnurtirion and malabsorbsion. I started gaining right after the Lyrica started even though the first 2 mos on it were the most active time in my life in the last 5 yrs probably. I was eating 3 balanced meals a day and actually had my first job in 5 yrs taking care of an elderly man and doing his daily care and physical therapy such as walking. Unfortunately he had a stroke and my job ended when he had to be in nursing home but no matter in those 2 mos I gained 15 lbs. In the next 10 mos and 20+ lbs, I took care of my Dad when he was dying of lung cancer and I suffered from extreme dental pain and ended up having all my teeth extracted...all this while gaining so much weight...no way was it anything but the Lyrica.
Topamax I had been on for several years for seizure disorder, migraines. Never noticed many side effects with that. Anyone on Sarvella?
The Fiorinal is the medication that should be taken as needed at the onset of a migraine...
The Neurontin is a medication that can take a while before you start to feel the full benefit of the medication. Additionally, this is one of those medications that should not be stopped abruptly without talking to your doctor first because it it has to do with the nervous system (nerves and brain). If you don't take this medicine daily/twice daily/three times daily like it is prescribed, and only take it "when you feel like its needed" then it actually won't feel like its working because the levels in your system will not be at effective levels. It is much like a blood pressure medicine... you take it to keep the problem away, even when it seems like it is no longer there because if you stop the med it will come right back.
About the Topamax replacing both, I would doubt that it would replace both medications because it is a preventative medication. It does not treat those migraines that happen (break through migraines) even when on prevention meds. I use it for my migraines and I still require my second prescription for my acute migraines when they do break through the prevention medication (even though it is less often). It has helped so much with my FM! This was a very unexpected but welcomed surprise! I was not on any meds for it but it totally gave me my life back!
I was just diagnosed w/ fibromyalgia in Decembe. Started Cymbalta 30 mg a day for 2 weeks then increased to 60 mg a day. I had to stop it 2 weeks ago due to the side effects. I had profuse sweating, itching, didnt care about nothing and the worse, grinding my teeth and dry mouth. My doc mentioned Savella but it looks very similar to Cymbalta. Yes, Cymbalta got rid of 90% of my pain but I was ruining my teeth. My pharmacist mentioned Topamax so that is why I am looking on here to see what people think. I am very overweight and do not want any drug that may increase my appetite and cause weight gain and I knew Topamax helps with weight loss. But I need something cause my pain is back and it is making me depressed. I think I am calling my doc tomorrow and asking for Topamax and will start at a low dose and titrate up. Anyone.... what is the therapeutic dose to manage the pain?
I was recently diagnosed with FMS after years of chronic pain, fatigue and depression. I also have a history of narcolepsy and sleep apnea. Plus I had both knees replaced and each time it was a really long, painful recovery. Much longer than others, it seemed. I was recently put on Cymbalta and am up to 120 mg now. Then a few weeks ago I started on topamax 50 mg at night. Then a week ago the doc increased me up to 50 mg twice a day. I'm so tired and weak I can barely get myself to work and once I'm there I can't get anything done. I'm so miserable because I'm so tired! Can it be taken all at night? Or if it has to be taken twice a day, will this tiredness go away? It's hard enough when you already have narcolepsy to deal with! But I need something for the pain. Some days I can't even lift my arms... or get myself out of a chair. It just gets so bad.
I almost cqnnot live without Lyrica due to my peripheral neuropathy in my feet, thighs, and fingers. I've tried to stop several times, but the pain is too great without it. Lyrica works well on the pain, but does make me sleepy dizzy and sort of wacked out. It's the main reason I'm disabled. Cannot hold a job because I cannot focus well on what I'm doing. The biggest downside is cost. Lyrica supply for me for 3 months is about a $1000 bucks. That's $4000 per year. Yikes!!
I have been on lyrica for two months now. have gained about 8 pounds and still in pain from FM so bad that I can barely work. Dont sleep well at night because the pain in my hips and back is so bad. The lyrica also makes my lips, tongue and face feel numb. I told my doctor this and he didnt even act like he was concerned. I want off the lyrica there has got to be something with less side effects out there. I had lost 85 pounds prior to lyrica. Now gain3d 8 back because of lyrica. i would rather b in pain than to go back to being fat again.
I know how you feel, I just changed to topamax from Lyrica. The bad thing for me is that the Lyrica really helped me but it was putting so much weight on me. I went from 120 to 158 pounds in just a little over 3 months time. I have only been on topamax a month now. It helps but I havent been on it long enough to be on a high enough dose yet to know if it is going to help as much as the lyrica did. Is there anything else out there that anyone else knows of that I can take or that they have taken that can help for nerve pain...Please help.....
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