User Reviews for Topiramate to treat Fibromyalgia
Also known as: Topamax, Trokendi XR, Qudexy XR
Topiramate has an average rating of 6.2 out of 10 from a total of 40 ratings for the treatment of Fibromyalgia. 55% of users who reviewed this medication reported a positive effect, while 35% reported a negative effect.
“I have been on Topiramate for 2 months now after trying everything for over 10 years to help my nerve pain, fibromyalgia and chronic pain. I am glad it works well enough to get some of my life back.”
Topamax (topiramate): “I went on Topamax 9 months ago. At first it seemed to work then 2 months later in the beginning of summer, I realized I stopped sweating. Then the hair loss started. I became extremely constipated, muscles were sore, feet and hands felt like needles. Towards the end my muscles became weak and a lot of nausea. I still had migraines on a regular basis. My body hurt so much. After 9 months I had severe diarrhea and vomiting. After being off the pill about 2 weeks later my body started feeling better. Doctor says it is the only pill I have left to use. I would rather have the migraines than how awful this pill made me feel.”
Topamax (topiramate): “I have been taking Topamax a long time. I was taking 200mg but I was having memory issues so I asked my doctor if I could try 175 mg and she agreed. It has worked much better. I was taking it all in the morning and I was so tired in the day. I read on here that someone suggested taking half in the am and half in the afternoon. I started that 2 weeks ago and it has made a huge difference my energy level. I use to stay in bed most of the day. Now I bake and do crafts with my kids.”
Topamax (topiramate): “This has been a wonder drug for me when combined with Cymbalta. I have suffered for years and had been on narcotic pain killers. The pain had finally gotten so bad that even those weren't working. I work in Pre-K and didn't want to give up my job to become a disabled person living at home on pain killers. I found an awesome Doctor who understood that I didn't want to live on those types of medications. After only two visits she tapered me off of the medicines I was on and started me on Topamax along with Cymbalta. That is all I take. No more pain! Life is wonderful again.”
Topamax (topiramate): “Topamax was a miracle drug for me! It helped with my Fibromyalgia pain & headaches. I would definitely recommend this drug. I have to stop taking it now due to the development of kidney stones. I wish I could stay on it as it improved my life by 90%. I'm a 59 year old female. I have had fibromyalgia for 23 plus years.”
Topamax (topiramate): “I was put on Topamax 2 months ago after a serious car accident that left me in a flare up of my fibromyalgia. I have not reacted well to medications in the past and have had serious reactions which lead to serious consequences to the other meds I was on. Topamax has been the only medication that I have been able to tolerate well. It does take a while for it to start working though and I have had a few side effects but none that I'm not willing to put up with and 2 of them have gone away since I have started the Topamax.”
Topamax (topiramate): “I love this medicine. My Dr originally gave it to me for weight loss but it got rid of all my joint pains. I had it everywhere. It was a miracle drug for me. I am noticing some memory loss, and difficulty concentrating but I'm 52 so it could be age. I'm going to cut back on the dosage and see if I notice changes.”
Frequently asked questions
- Does topiramate cause weight loss?
- What not to take with topiramate?
- Does topiramate cause hair loss?
- How long does it take for Topamax to start working?
Topamax (topiramate): “This medication in combination with other medicines gave me my life back. I had unsuccessful or allergic reactions to other meds that I had tried. I thank my doctor and this medicine every day for giving me my life back.”
“I take a dose of 200mg topiramate daily for Fibromyalgia and weight loss after being on lyrica for 3 years. Lyrica (600mg daily) destroyed my brain synapses, gained 15kg and made me more sick than better without taking the fibro pain away. Topomax at the start was on 50mg (while on lyrica for weight loss) that's when I experienced the brain fog (they call it "dopamax" for a reason) you stumble your words, can't think straight etc, but that only lasted a week or so adjusting to the new medication. Once I heard that topamax at higher dose (200-400 a day) could treat fibro I weaned of lyrica, detoxed myself for 3 months then I started topamax as my treatment. Best decision I ever made. My daily fibro pains are almost non existent, my flare ups are further apart than before. And the weight is falling off. I've lost 17kgs in 12 months. I'm moving again, returned to the gym (still in lots of pain at the gym but it's manageable) This drug is my miracle answer to a long nightmare”
Topamax (topiramate): “Diagnosed with fibro and CFS after car accident. Began to get vertigo, light and sound sensitivity on top of all the usual symptoms. They would stay for weeks. Found out eventually it was aurora of migraine. Topamax sorted me out. No more brain fog, vertigo, audio or photo sensitivity. The tiredness also lifted, I can stay awake all day but can't over do it. Pain still there though but I feel so normal after so many years of disfunction it's unbelievable. It's like someone unscrambled me!!! I'm on 175mg. 100mg in morning, 75mg in afternoon.”
“I have tried a lot of different medications for fibromyalgia. Some work but cause significant weight gain. This one works significantly well. I actually stopped taking it for 3 months because my I didn't have insurance, and my body felt HORRIBLE. It became WORSE AND WORSE. I started taking it again and I felt SO much better. For those of you that truly experience the extreme fatigue and pain from fibromyalgia, I strongly recommend trying Topiramate.”
Topamax (topiramate): “Been taking Topamax since 2004, off label, for peripheral neuralgia in my feet with very positive results. Did not realize the additional effects on fibromyalgia until I ran out for about 2 weeks...won't let that happen again!”
Topamax (topiramate): “Miracle drug! The side effects can be daunting at first, like tingling/numbness in extremities that won't stop for hours, but if you increase your water intake substantially and power through, it's totally worth it. My daily tension headaches are 90% gone, which is huge for me. It didn't do much in terms of overall muscle pain reduction or the daily body aches, but I did lose over 30 pounds in four months. I stopped drinking all carbonated drinks (because it makes them all taste super flat weirdly) and definitely am not as hungry as I used to be, so that's just a bonus.”
Topamax (topiramate): “Do not take this if you are even remotely sensitive to side affects. I was considered extremely smart and an excellent memory with a background in english and communication. I cannot remember what I said or did yesterday.... Much less my life memories.”
Topamax (topiramate): “The thing I noticed is 90% of my outbreaks went away, however the other 10% were more severe. If you can group that other 10% of the time with a powerful pain medicine then making it through this is not as hard as it use to be. I had been taking other opioids for other conditions that did nothing to help fibro until topamax.”
Topamax (topiramate): “I was put on this medication for fibromyalgia and basilar type migraines by my neurologist in high school. I originally went off of it because I could not handle the side effects. I was then bullied by my mother & doctor into going back on to it because "it was my only option". I became face blind, could not navigate my way around even with a map, memory difficulties. issues doing simple math, became asexual & had no motivation to interact with people. Towards the end of my time on topamax I was so depressed that I would just sit despondently. I switched doctors and she immediately stopped it. The side effects went away after stopping the first time but after the 4yrs on it I still have some side effects that haven't completely gone away.”
“I used Lyrica for six months and gained ten pounds a month. I have been off of the Lyrica since April and have only lost 15 pounds. Recently started 100 mg of Topamax at bedtime and this is the answer! It actually will encourage the body to shed weight and have lost six pounds. Pain has gone from an intolerable 7 or 8 on the pain scale to about a 3. This is what I have been praying for.”
- How long do you stay on Topamax for migraines?
- How does Trokendi XR help with weight loss?
- Are Topamax and Trokendi XR the same thing?
- What is topiramate used to treat?
“I do not tolerate Neurontin or steroids well. They blow me up like a balloon. Topamax, along with Cymbalta has given me excellent relief with little side effectcs. Yeah to no more invasive injections and cankles!”
“This is the only thing that has helped my fibromyalgia and migraines. I find that a lower dose works best otherwise the side effects, especially aphasia becomes really bad but 50mg strikes a good balance between helping with the aches and pains as well as migraine prevention without too much off the commom side effects.”
Topamax (topiramate): “Highly negative experience. Was treated for migraines with this medication, however I ended up with severe depression and suicidal behaviours. It became so bad I could not be left in our house alone. I had muscle atrophy and injured myself just from trying to walk. One broken foot and 3 back injuries. Worst medication I have ever taken; it almost killed me.”
“Make sure to start with low dosage, or it will make you sick. Had less stiffness right away. Still some pain, but nothing like before. Somehow, it helped reduce my asthma symptoms. First time I slept 7 hours in a row since my car accident 5 years prior. Lost 20 lbs easily, but I had to stop taking it due to side effects. It makes certain foods taste terrible; gave me a constant pins/needles/numbness feeling in my hands and feet; dropped things more often; handfuls of hair fell out; sweat turned orange; dumb as box of rocks. All this yet it worked better than anything else I'd taken.”
“For all you on Phetermine get off of it. You don’t need it to lose weight. The Topiramate you will drop weight on this alone. Especially at 50mg and above. Try not eating out fast food will put weight on you like no other, so will diet soda that’s worse for you than regular soda, don’t eat sugar free anything it’s all made with fake sugar your body can deal with real sugar as long as your not making a pig of yourself. But seriously even if you're not trying this will help you drop weight.”
“Worked like a dream! I went off of it because I didn't like some of the side effects, and my Fibro symptoms came back with a vengeance, crippling pain... bedridden most of the time, etc. I'm going back on next week. If you take this drug DO drink a lot of water as instructed to avoid kidney stones. I didn't drink hardly any water and got a stone. Also, I didn't have ins when on it so had to get a card from manufacturer (free). As for effectiveness.. it worked for me!”
Topamax (topiramate): “I took this for my chronic central pain state and it was a very effective pain killer as long as Tapentodol not taken simultaneously, then skin itch develops at low dose of EXTENDED RELEASE (capsule) 100mg nocte and 50mg morning. The itch was severe by time dose increased to 200mg am and nocte but no,other side effects except possible responsible for my delayed circadian Rythm disorder. Waking constantly before 4am sleeping 4-11am so very inconvenient, but others side effect free and a good pain killer. Remember to check if you have been prescribed the normal tablets or extended release capsules and that pharmacy has given you the correct kind.”
“I have been on Topiramate for 6 months, I feel I have given it a good try...but the side effects are not going away. I have so many and I know it is not doing much for my pain so today I am going to have to go on yet another different med, have been on so many. The one good thing , I lost 60 lbs. but I sure suffered so bad for it. I have to go to a Pathtologist for the blisters on my tongue that the doctors figure are not caused by the medicine and yet it is listed twice as a side effect. Thanks for listening to me.”
“I have been taking Topamax for 3 years now, for fibro and bipolar disorder. My dosage has been 150mg twice daily and on this dosage I have not experienced any pain and my mood has been stable. Getting onto this drug was difficult for me, I am an ex street drug user and while getting onto this medication it made my body feel like I was withdrawing from drugs at the times I was in between my doses. Once that was over the normal weight loss that most have, carbonated drinks etc I also experienced. Something that I have experienced that I have not read about is a MAJOR increase in food sensitivities. I am in my 40's and I have read that women who are hormonal can become food intolerant while taking Topamax. Recently I reduced my dosage to 100mg twice daily and my pain has reared its ugly head. For me topamax is a good medication. Good luck everyone. ”
Topamax (topiramate): “I was on Topamax for almost a month, but I had to stop because of the painfully tingly feet. It didn't do much for my pain overall either. I was also taking it to curb my appetite and for PMDD, but my appetite was the same or worse and it did nothing for the PMDD (might have actually made it worse!). We tried this because Geodon worked well for my PMDD but suddenly stopped working after 4 years (and gave me tardive dyskinesia).”
“I started this medication for fibromyalgia and weight loss. I had a horrible reaction. I felt like I had the flu, I was cold and hot. The worst part was it was like it sucked all the energy out of me. All I could do was lay in bed and cry. I only got up to get water and go to the bathroom and even that was hard to do. Every time I would get up I felt like I was going to pass out. I would get dizzy and I had shortness of breath. Finally after 5 days I gave up and stopped taking it. Never again will I take this medication.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
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