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Topiramate for Fibromyalgia User Reviews

Brand names: Topamax, Trokendi XR, Eprontia, Qudexy XR

Topiramate has an average rating of 6.2 out of 10 from a total of 42 reviews for the off-label treatment of Fibromyalgia. 55% of reviewers reported a positive experience, while 36% reported a negative experience.

Topiramate rating summary

6.2/10 average rating

42 ratings from 45 user reviews.

Compare all 27 medications used in the treatment of Fibromyalgia.

10
36%
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10%
8
10%
7
0%
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7%
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2%
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3
2%
2
2%
1
31%

Reviews for Topiramate

  • ponygal
  • April 28, 2010

Topamax (topiramate) "This has been a wonder drug for me when combined with Cymbalta. I have suffered for years and had been on narcotic painkillers. 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 painkillers. 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."

9 / 10
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208 Report
  • Burps
  • Taken for 10 years or more
  • June 24, 2015

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."

10 / 10
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119 Report
  • Rln
  • Taken for 2 to 5 years
  • June 7, 2020

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."

10 / 10
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55 Report

Frequently asked questions

  • tinke...
  • Taken for 1 to 6 months
  • April 27, 2013

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."

10 / 10
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114 Report
  • Turn
  • June 2, 2016

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."

8 / 10
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89 Report

Are you taking this medicine?

  • Anonymous
  • Taken for 2 to 5 years
  • August 26, 2014

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."

10 / 10
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92 Report
  • Infy
  • January 11, 2020

"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"

9 / 10
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45 Report

More FAQ

  • DogLo...
  • Taken for 2 to 5 years
  • June 22, 2014

"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."

10 / 10
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77 Report
  • Ainej
  • Taken for 1 to 6 months
  • February 20, 2017

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."

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60 Report
  • Lynn...
  • January 27, 2017

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."

9 / 10
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57 Report
  • Teddy
  • Taken for 10 years or more
  • May 13, 2018

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!"

10 / 10
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46 Report
  • Dummy
  • Taken for 1 to 6 months
  • July 5, 2018

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."

1 / 10
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41 Report
  • Bobby...
  • December 1, 2015

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."

9 / 10
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51 Report
  • WWikoff
  • November 23, 2009

"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."

10 / 10
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74 Report
  • Heada...
  • Taken for 2 to 5 years
  • February 11, 2017

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."

1 / 10
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40 Report
  • lisaa...
  • March 27, 2015

"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!"

10 / 10
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41 Report
  • Anonymous
  • Taken for 1 to 6 months
  • November 21, 2015

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."

1 / 10
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37 Report
  • Ella...
  • Taken for 1 to 2 years
  • September 4, 2016

"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!"

10 / 10
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30 Report
  • Poodd...
  • Taken for 5 to 10 years
  • August 18, 2018

"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."

8 / 10
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24 Report
  • Calen...
  • January 19, 2016

"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."

8 / 10
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31 Report
  • cinder
  • Taken for 6 months to 1 year
  • January 6, 2021

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."

1 / 10
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15 Report
  • Anonymous
  • Taken for 6 months to 1 year
  • March 19, 2015

"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."

1 / 10
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30 Report
  • MZApzap
  • Taken for 2 to 5 years
  • July 18, 2017

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."

8 / 10
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21 Report
  • angzi...
  • Taken for less than 1 month
  • September 12, 2013

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)."

3 / 10
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29 Report
  • Missi...
  • Taken for 1 to 6 months
  • June 22, 2017

"I was given Topiramate for a list of conditions including Fibromyalgia, Migraines, Weight Loss, and tremors. I was prescribed only 25 mg 1 X a day. As for side effects, I have found that many foods do not taste the same including yogurt and cottage cheese. They tasted old or out dated. I don't usually drink carbonated beverages, but those I have, tasted fine. I had a decrease in appetite beginning the first month, but only realized it upon looking back after a weigh in at my doctors office where I had lost 20 lbs. I had no migraine episodes during that first month, my Fibromyalgia had improved only slightly and my tremors improved also slightly. After 6 months, I had lost a total of 30 lbs with out trying as my appetite had decreased."

6 / 10
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21 Report

Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.

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