User Reviews for Topiramate
Also known as: Topamax, Trokendi XR, Qudexy XR
Topiramate has an average rating of 6.4 out of 10 from a total of 1,125 ratings on Drugs.com. 53% of those users who reviewed Topiramate reported a positive effect, while 28% reported a negative effect.
|Bulimia Off-label||7.6||21 reviews||7 medications|
|Obesity Off-label||7.5||200 reviews||65 medications|
|Diabetic Peripheral Neuropathy Off-label||7.4||13 reviews||42 medications|
|Bipolar Disorder Off-label||7.2||122 reviews||30 medications|
|Seizures||7.0||17 reviews||52 medications|
|Borderline Personality Disorder Off-label||6.9||15 reviews||25 medications|
|Fibromyalgia Off-label||6.1||42 reviews||20 medications|
|Seizure Prevention||6.0||68 reviews||28 medications|
|Trigeminal Neuralgia Off-label||6.0||13 reviews||7 medications|
|Vulvodynia Off-label||6.0||2 reviews||9 medications|
|Migraine Prevention||5.9||593 reviews||31 medications|
|Tourette's Syndrome Off-label||5.9||11 reviews||7 medications|
|Smoking Cessation Off-label||5.0||4 reviews||18 medications|
|Epilepsy||4.5||4 reviews||54 medications|
|Summary of Topiramate reviews||6.4||1,125 reviews|
Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.
For Seizures: “I took Topamax for a very long time without incident, but despite not following a Keto diet or other specific dietary restrictions, I developed a case of kidney stones that in ER 5 doctors missed in 3 years. Their treatment destabilized the seizures bc of their method of treatment and it finally resulted in a mild case of incontinence. I liked the way it worked initially, but not the final problems.”
Topamax (topiramate) for Obesity: “My doctor prescribed this for obesity and I was on it 2-3 months. I didn't lose a single pound. It didn't even make me tired or sleepy, a side effect I would have welcomed. I discontinued it because it was giving me painful and disturbing pins and needles in my feet and legs at night. It wasn't worth waiting to see if I would lose weight further down the line. Plus I was fearful about the side effect I read about concerning vision.”
Topamax (topiramate) for Epilepsy: “Please please explore other options. I hope no one has the experience I had. I was prescribed this for seizures and sleep issues. My first and only time taking this pill was horrifying. I could not see, think and had no ability to function. I sat in the bathtub an entire night awake without having a single thought pass through my mind. I did not know this was even possible. I was crying uncontrollably and yet I understood that was I trapped inside of my body without being able to have any thoughts. I was simply aware that I was there and nothing more. Don't try this at home kids.”
Frequently asked questions
- Does topiramate cause weight loss?
- What is topiramate used to treat?
- Are Topamax and Trokendi XR the same thing?
- How does Trokendi XR help with weight loss?
For Obesity: “I went on topiramate for migraine prophylaxis, but also expecting to benefit from weight loss. I've been taking it for 5 weeks, the only side effects I have experienced are some drowsiness the first 3 weeks or so, and hand and feet tingling which improve if I'm really well hydrated. My headaches have significantly improved and I've lost 13 lbs! I never crave anything sweet anymore, I'm able to chose healthier options when I'm hungry and I'm also able to stop eating once I'm satisfied. I'm usually an emotional eater, and I feel like a sane person eating and like I can have a healthy relationship with food while on this med. I'm also lucky my side effects have been really mild so far. I started with 25 mg at night and gradually escalated to 100 mg every morning and 50 mg every night.”
Topamax (topiramate) for Migraine Prevention: “My Neuro started me on Topamax 25mg once daily for severe migraines. Within a few days, I was having severe irritability, anger with 'out of character' cursing (I cussed out a store clerk, a doctor's office receptionist, and my best friend), severe Labile mood changes, and a suicidal threat all within 7 days of my 1st dose! I quickly stopped the medication when I realized my symptoms were side effects of the Topamax! It was very dangerous for me and scared me!”
For Bulimia: “This is my update review. Please see the below experience- I was very happy with my progress with this medication. Nothing has helped before. I was getting healthier, not binging losing weight, AND breaking out. I haven’t broken out in years!! My hair is still falling out in clumps and I pop in biotin, B5,B12,selenium religiously. I am on 100 MG everyday. So after seeing the state of my skin I have decided to discontinue use. Breaks my heart to see my skin so bad but have been an acne sufferer for years and only managed clearing it in my early thirties which was a huge blessing. The search is still on!”
For Migraine Prevention: “Took it for about 4 months in 2010 for severe and persistent migraines. It completely got rid the migraines. I’ve had maybe 3-4 in the last ten years and they are nowhere near as bad as they used to be. Lost a SIGNIFICANT amount of weight while taking this. I wasn’t overweight, but I did become underweight. Hair loss was extreme. I have long and thick hair, it started falling out in clumps and took about 4 years to thicken back up after quitting. Coming off of the drug was one of the worst experiences of my life. Terrible depression and OCD. However, I did quit cold-turkey which is a no-no. Had a hard time recalling words while on the med. Could not think as fast or as clearly. But that weight loss, tho! I’m considering taking the drug again in 2021 because the weight loss was incredible, quick, and completely painless.”
- Are Topamax and Trokendi XR the same thing?
- How does Trokendi XR help with weight loss?
- What is topiramate used to treat?
- Does topiramate cause weight loss?
For Migraine Prevention: “I had taken this medication for a year or so as a migraine preventative but had stopped due to pressure in my head and tingling. Fast forward 8 years or so my pain management dr wanted me to try it for peripheral neuropathy. Each dose causes extreme pressure in my head, tingling in my head & face and worsening of my chronic nerve pain. I actually can’t imagine a worse option for someone that’s learned to live with chronic pain than something that increases it and causes more pain. I’ve felt like I’m having a stroke for the past few days and this is following one dose.”
Topamax (topiramate) for Migraine Prevention: “I would use this medicine for migraine with great caution. It did help the pain eventually but the side effects and terrible withdrawal should be considered. I am glad l finally got off it but not without paying the price with time to get through the terrible withdrawal.”
For Bulimia: “I am 37 years old and have been bulimic since I was 15 when I was in high school. I have tried everything to get rid of this horrid disease. I have tried everything from therapy, to reading books, but haven’t checked into rehab. I have developed a pattern- binging, purging then a few days of water fasting. Nothing has helped me cure so far. Not sure if this will either. So far I have been on this medication for a month. 25 mg to start with for a week. Did nothing. I almost quit but glad I did not. Then I moved onto 50 Mg twice daily two weeks ago and my appetite went away and so did my need to binge. Lost some weight but that’s a side effect. I really don’t care if my appetite comes back but let’s hope I don’t binge again. So far on 100mg I have no desire to binge, no desire to overeat and it’s a great feeling. I feel free after so many years! You will know what I mean if you have felt as trapped as I have as a bulimic. This is a miracle drug.”
For Migraine Prevention: “I was on this topiramate medication for just 2 weeks before I took myself off. I was only on the lowest dose and I had horrible side effects. It started with nausea and the tingly hands, but then it caused breakthrough bleeding while on birth control at just 25mg (I was told it would be less effective at 200mg+). It caused vivid dreams, messed with my appetite, and I was not only extremely tired, but I couldn't sleep despite being so tired. It did, however, stop the migraines. But the side effects were not worth it for me to continue this medication.”
For Tourette's Syndrome: “Didn't do anything. It was just me basically swallowing 8 pebbles everyday.”
For Migraine Prevention: “I have tried just about every migraine medication in the book and topiramate was the worst. First day I felt like the whole world was full of static. My face went COMPLETELY numb for long bouts of time, longer than 24 hours at a time sometimes. After that I noticed a huge problem with brain fog and impairment of thinking. This drug is also known in (younger) migraine patients for causing severe mental health changes. I’ve known people who became suicidal within the first week and were relieved of depression when they stopped taking it. It did decrease my migraines some but did not stop them.”
For Obesity: “I was just prescribed generic topamax, 100mg a day. I asked for Adipex but dr wants my blood pressure lower so she prescribed this. Today is only my first day so I decided to research. Reading these stories has me both excited and anxious. I am a recovering heroin addict. When I got clean and started methadone I gained about 60-70 pounds and am having a hard time taking it off since I still take 30mg of methadone daily. I work out anywhere from 1-5 days a week, depending on my schedule. I'm worried about the tiredness some people have experienced, because I do love to work-out. Also afraid of losing the ability to recall words, as speaking and grammar are my strong points. I guess we'll see. I plan on getting on Adipex as soon as my dr says it's safe to do so. I will update. My starting weight today is 225lbs and I am 5'5. Wish me luck!”
Topamax (topiramate) for Migraine Prevention: “I was put on Topamax in September 2019 to treat lifelong migraines. I suffered very severe side effects across the board. My brain got foggy and I started dropping words or leaving sentences unfinished. I developed a skin reaction to metal and the skin peeled off under my wedding ring and where my bra clasp met my skin. The worst part was the crippling depression and anxiety. I spent hours crying. I developed such severe anxiety and insomnia that I stopped going to bed. I would just sit on the couch all night in a fog or fighting through panic attacks. I was prescribed Ativan to manage the anxiety. My GP put me on suicide watch and started to taper off the Topamax dosage. Before I was completely off, I developed an allergic reaction: my face, hands and feet swelled and I developed full body hives. I ended up in the ER where I was put on a high dose of steroids and anti-histamines. I went through horrible Topamax withdrawal, which left me nauseous and with the worst headache of my life.”
For Migraine Prevention: “I've had migraine for 50 years I've tried lots of meds. None really did much I now use sumatriptan. I'm just getting over COVID had a chat with the doctor as I was having a lot of migraines with the coronavirus and fast running out of sumatriptan. He said I need to try this pill your all talking about but I'm not going to as I don't want the side effects. I'll stick to the sumatriptan as they get rid of my migraine within a few hours”
For Borderline Personality Disorder: “I was placed on this medication topiramate and it helped me with my borderline personality disorder! I was able to function better and it assisted with mood and irritation. The side effects at first were difficult, however it got easier. I was on 50mg daily.”
Topamax (topiramate) for Fibromyalgia: “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.”
For Migraine Prevention: “I was on topiramate, 100 mg daily, for at least a month for a continuous bitemporal headache. It did not help with headache relief for me. I didn't get any of the "Dopamax" side effects but I did have a raging hungry feeling most mornings, which was annoying.”
For Obesity: “I used to weigh 339, now I weigh 295. My goal is to get to 200 pounds.”
Topamax (topiramate) for Migraine Prevention: “I've been suffering from migraines for over 10 years now and 5 years ago I started with propanolol, then depakine which didn't help and and now topamax eventually. Topamax is awful. It made me feel suicidal. I started with 25mg and followed the 4 week steps in upping the dose like the Dr said. My family started to see a personality change instantly. When I reached the 100mg 2/day dose things started to get worse. For 3 weeks I was nauseous, I couldn’t get up, started to feel stupid, I had exams and I couldn’t focus at all, strange taste in mouth, numbness hands and feet and the tiredness. I slept for days and was still tired. This medication is DANGEROUS. I never wanted to die so badly. Please think about this.”
For Bipolar Disorder: “Started taking topiramate. Christmas night was first night I started itching. I took my Atarax calmed it down went to sleep 2nd night I took it same thing, But I also woke up @ 2:30 and my mouth was sore and my tongue felt like it was burning sensation and I was itchy all over”
Topamax (topiramate) for Migraine Prevention: “So I was on Topamax 2 different times. The first time I was on Topamax and Acetazolamide for "Pseudotumor Cerebri" I experienced a very bad reaction. I was so spaced out. I didn't want to eat and when I did eat I only had 4 bites once a day and I was done. I drove a semi truck while taking this medication and was so zombie like. Doctors were NOT sure which medication was causing it. Then when I scared so bad in the MRI machine the MRI tech had me transferred to the ER and there I was told I had "metabolic acidosis" so they told me to stop immediately both medications. I was on this medication for only a short 5 months! So Round 2 is 5 years later and just Topamax alone. This time is for Migraine Prevention. This time was on it 21 days. My hearing has severely decreased. The doctor says I'm NOT sick and my sinuses are clear. So here we go again. I have had to stop! Hopefully this 21 day round of Steroids will help restore a little if not all.”
Topamax (topiramate) for Migraine Prevention: “Took topamax for 3 weeks. It did not help my headaches. The side effects were getting worse as time went on. No desire to eat anything. I started messing with my blood sugar. Literally started to feel like it was making me crazy. Weaning off of it after only 3 weeks was also terrible. Anxiety, shaking, feeling crazy. I could tell when it was completely out of my system. Felt normal again.”
For Obesity: “I was given this for sleep. I had not even heard of the weight loss aspect of this drug. Tonight I was looking at my pills to plan my vacation. The name didn't look familiar to me so I looked it up. One of the side effects was weight loss. The funny thing is tonight some family members I had not seen for about 4 week came by and they both asked me how much I had lost. I had just put on a shirt that didn't fit me at all 1 month ago and it was baggy. I was really surprised it fit. So I thought I must have dropped weight. Tonight I got on the scale and I was down to 295 from 313 just 4 weeks ago. I had no idea why until I looked up this drug and then it made sense. I'm only on 25 mg tablets 1 per night. Now I'm looking forward to trying on all my old clothes tomorrow.”
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.
More about topiramate
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- Drug class: carbonic anhydrase inhibitor anticonvulsants
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