User Reviews for Topiramate to treat Migraine Prevention
Also known as: Topamax, Trokendi XR, Qudexy XR
Topiramate has an average rating of 5.9 out of 10 from a total of 570 ratings for the treatment of Migraine Prevention. 45% of reviewers reported a positive effect, while 32% reported a negative effect.
Topamax (topiramate): “On Topamax for 15 years for migraine prevention. Has changed my life. After trying so many things for years and having the quality of my life being severely impacted by migraine, this wonder drug has lessened the pain and nausea from a 9 to a 1.”
Topamax (topiramate): “On Topamax and 6 years ago I had what I thought was a seizure and spots in my right eye. The spots NEVER went away. Other symptoms of this horrible drug-ITCHING, SEIZURES, HAIR LOSS, EXTREME HOT FLASHES, EXTREME WEIGHT LOSS, my doctor never, ever cared about any of it. I quit this awful drug in October, 2016. Had a minor stroke shortly after. Do not take this drug if you want to stay healthy and keep your eye sight. I filed a complaint with the FDA and of course they didn’t care either. This drug is a result of greedy drug companies and FDA being lobbied to allow such a destructive drug. Doctors don’t care either. They all just keep making their money while patients end up with permanent damage that CANNOT be fixed.”
Topamax (topiramate): “I suffer from Migraines and peri menopause and started to suffer those extra pounds that just want come off and with migraines so hard to work out and go for walks and work out to get off the extra pound that pre menopause woman suffer from. I am 5'3 and always weight 120-125 and now weigh 140. Since I started on Topamax on February Dr put me on 25mg per day for 2 week, then increased it to 2x a day 3rd week. Now its April 16 and weigh in - 125 back to my original weight. I feel back to normal. I have so much energy. I would say the only side effect I have is that I feel colder - my hands are cold and I'm more thirsty, again which is ok because I drink more water which is good because before I never drank water now I do. My Migraines are hindered and I feel alive-”
“Migraines, bonus weight loss I’ve had migraines for years but they have recently increased in frequency. Suffering from severe migraines (2-3 a week lasting a day or two each). I finally decided to try a daily med. I started with Verapamil. No good-dizzy, could barely walk or function . Prescribed topiramate next. I’m migraine free for two months (only 1 minor migraine the first week) and down from 139 to 128). I’m 5’5. No other side effects-mind is clear, no tingling. I feel great! Everyone’s body is different. I hope what worked for me, works for you.”
“I took 50mg Topiramate in combination with propranolol 160mg for constant Migraines (tingling feeling, numbness down one side of my face etc) and the migraines have now gone for 95% of the time as opposed to being constantly present. What worked for me ===> take Topiramate at NIGHT before going to bed, especially when you start taking it. This way you don't get the initially unpleasant side effects over the first few days (for me nausea, floaty feeling... when I took in initially in the morning).... bear with this drug though. It worked for me after 4-5 days initially with some noticeable difference, then after 2 weeks its really effective. Don't be put off by reading the horrendous list of side effects, remember they have to list every side effect reported!”
Topamax (topiramate): “So far so good! No migraines! No more vomiting! I am losing weight! The best part is I am sleeping where as before the insomnia was truly the worst. I pray all this continues. I have had no side effects at all”
Topamax (topiramate): “Topamax ruined my life! Kaiser put me on it until my Psychologist said “get off of it if it’s not working” after I told her I had been on it for over a year! This medication caused tingling in my hands, feet ,face and caused me to see people’s faces in distorted ways like a horror film! My headaches are caused from a 2cm round tumor in my left temporal lobe near my cortex at the Hippicampos Hypathalamus, it causes light seizures and horrible right side brain headaches! Even though neurologists say it’s not connected, I know from reasearch it is connected and no one is helping me deal with the horrific debilitating headaches!So when Kaiser said “try Topamax”I said sure why not!I lost 2 years of my life with my son who was a jr in highschool, it’s a miracle my husband of 25 years stayed married to me ! Topamax ruined 2 years of my life ”
Frequently asked questions
- Does topiramate cause weight loss?
- Does topiramate cause hair loss?
- How long does it take for Topamax to start working?
- How long do you stay on Topamax for migraines?
Topamax (topiramate): “I'm 50 yrs old and have suffered from Migraines since I was about 12 years old. Too long! I've taken every medicine possible for prevention or cure with little or no relief. Too many trips to the ER for shots...the only real fix; then back home in a dark room for much needed sleep. When my Internist suggested Topamax, I jumped at the opportunity. Boy, I'm happy that I did. Yes, I had the initial side effects, lost 35 lbs originally (gained 10 back), have tingling in my fingers & toes but only in the winter when I'm cold. Very manageable. I don't drink pop, but tried one WOW...it was flat. I do struggle with words at times, but still manageable. My 3/week migraines now down to 1/month are generally managed with Excedrin Migraine. A ”
Topamax (topiramate): “I am 24 years old and I've had terrible migraine headaches since I was in high school. I've been on Topamax for 3 months and only taking 50mg a day since it can lessen the effect of my birth control and I don't want to highten the side affects. This has also been good enough to where I'm not getting migraine/tension headaches everyday like I used to (it was making my life miserable). I get them sometimes once a week now. My side effects from Topamax are I used to have some hand/feet tingling but it went away after I got used to the medication, it does make soda does taste flat, and I sometimes I forget words - but it's kind of how I am anyway. So far this has worked well for me and hasn't caused me any problems.”
Topamax (topiramate): “Had chronic migraines and was prescribed this medication. At first I had no migraines or headaches but then it got worse. I urge you to not take this medication If you have an alternative. It created a barrier in my conversations. I couldn’t comprehend what people were saying, had trouble creating responses and felt like I was drugged up all the time.”
Topamax (topiramate): “Having thought I was suffering from every ailment under the sun, I discovered it was actually side effects of these tablets. Breast pain, confusion, exhaustion, tingling sensation in finger's and feet, inability to string a sentence together, irritability, anxiety, depression, shortness of breath, heavy limbs. Unfortunately, I am clearly not suited to these tablets. Although, on a positive note, they have stopped my migraine's. I'm currently weaning myself off of them, from 75mg, 25mg... I've just been prescribed some High Strength B2, to start at 200mg per day, to increase to 400mg. In the light of these not suiting me, next will be Amitripyline.”
Topamax (topiramate): “I was prescribed Topamax for migraines. At first it was amazing, my migraines stopped. But as my dose increased, I began having loss of memory, confusion, and severe panic attacks. These problems persisted for a whole year after stopping the drug. One plus—I have not had a migraine since. This drug changes your brain chemistry. Be really careful.”
Topamax (topiramate): “I've been taking topamax for over 10 years. At first I lost 30 pounds. YIKES ! I stabilized and gained back some weight to a good weight for me. A few times I've had tingling in my fingers that lasted avery short duration. I 've been a chronic migraine sufferer for over 30 years. Started at 20 and I'll be 54 soon. Like many...I 've been to many Dr's and tried too many meds. This was the only thing that worked. Thankfully, for me, the side effects were minimal. Just because you have one bad experience, don't suffer. Find something. Meditation. ..something. You deserve a better life. We wouldn't be on this board if we didn't want to discourage or encourage someone else. Keep trying to live pain free.”
Topamax (topiramate): “I was put on Topamax (Brand name) in 2007 as I was having migraine headaches 5 and 6 times a month at a minimum (not just bothersome "headaches" but full on pain with severe vomiting and preventing me from going to work). At the time my insurance covered it and my copay was $10 a month. The only bad side effect I experienced was the tingling in my feet (sometimes severe) but it was worth it considering I went down to 1 migraine the first year I was on it. I called it my miracle drug (and I lost 30lbs!) It gave me life back.. and then it came off the insurance company's formulary and went from $10 to $60 a month. As a newly divorced mom I was unable to afford that but I was able to move to the generic Topiramate - which only became a nightmare and I now have lifelong issues (separate review for it).”
“I was extremely hesitant to try topiramate medication for migraines because of all the negative reviews about the really severe side effects. I put it off for more than a year but as a last resort I followed my neurologists advice and trialled it. Daily schedule was as follows: Wk1 - 12.5mg Wk2 - 25mg Wk3 - 37.5mg Wk4 - 50mg Wk5 - 75mg Wk6 - 100mg (stabilized dose) I have not experienced a migraine since week 4 of being topiramate or any side effects after week 2. In weeks 1 and 2 I certainly experienced the struggle with trying to get my words out and articulating what I was trying to say. I was also very tired and forgetful. No other side effects. For the past 7 years, my migraines have been so debilitating. In the last 6 months, this drug has given me my life back. I have being on so many other medications, tried alternative therapies, quit my job and spent thousands of dollars seeking specialist opinions. My only regret is that I didn't try this sooner.”
Topamax (topiramate): “On this medication to prevent migraines. It works like a charm. I had migraines almost daily and now I only have them the day before my period starts. I have not had the weight loss side effect people talk about though.”
Topamax (topiramate): “I was given Topomax about 2 months ago for recurring migraines; it did nothing but make my life . It a living nightmare. I started with complete loss of appetite followed by extreme nausea. After that, the psychological effects started. I become extremely paranoid; The anxiety and paranoia got worse and worse the longer I was on Topamax which was soon accompanied by intense depression. Next came the hallucinations; I would see paintings moving on the walls, see colors and shapes moving across the floor, and I would hear voices multiple times a day. I fully regret ever taking this drug, I want my life back.”
- What not to take with topiramate?
- How does Trokendi XR help with weight loss?
- Are Topamax and Trokendi XR the same thing?
- What is topiramate used to treat?
Topamax (topiramate): “I have been through so much with this medicine !! I ended up dizzy, confused, very irritable, pain behind my eyes so bad it would give me headaches every day. I was scared to death to drive as my perception was off, so bad sometimes it was like the road was moving not my car. I had memory loss and couldn't say things right or even do deposits at work, I felt as if my brain was trying to come out of my skull. On this I had to go to gyno because had abnormal periods and neurologist because of my head!! I too had breast , arm and leg pain to the point of couldn't wash my hair or get ready . My legs were so bad I couldn't make it up the stairs! My husband was scared I was scared I was losing my mind and had something major wrong with me. This medicine wreaks havoc on your body and brain and eyes !!! NIGHTMARE DRUG....... I stopped it 3 days ago and getting better already... I'm 42 and a healthy person or was!!”
Topamax (topiramate): “Began Topamax in 2005 after suffering from migraines that would last for weeks. The litany of side effects is true, and its nickname, "Stupamax" is honestly earned. Word recall, memory, trouble focusing, hand numbness, fatigue, insomnia, the works. But number of days with headaches went from 21 to 9 the very first month. Now, after years of taking it, my body has been depleted of vitamin B12, and I have been suffering from horrible GI troubles. However, none of my doctors seemed to link Topamax to the B12 depletion. It took Google to figure that one out. But thank you to Google and B12 supplements. I hope this helps someone else relieve any issues they've been experiencing. ”
Topamax (topiramate): “Been on Topamax quite a few weeks now, to help my migraines. At 50mg my it wasn't doing anything additional for my migraines that my low histamine diet wasn't already doing, but it did wonders for my brain fog and energy! Very pleased! A few word- finding problems but I can sit and read a whole book now and remember what I read. Last week I went up to 100mg and sadly it has begun giving me daily migraines. Not bad ones but it's not a good sign. I will be dropping it back down to 50mg for a week or two and if they resolve I will try again to confirm if the higher dose is the issue. As advice: don't listen to the scaremongering on here and take the miracles with a grain of salt. It IS approved for migraine, it's not an off label use.”
Topamax (topiramate): “I started taking Topamax about 3 years ago. Began at 25mg a day for a week. The second week I was supposed to move up to 50, the third week 2 75mg and then finally to 100mg on the fourth week. I never really had to move past 25mg. My migraines all but stopped after a month of being on the medication and at the lowest dose. I had all the side effects - tingling, weight loss (very happy about it too), forgetting certain words and the nasty taste of soda. That was okay because I only drink it very rarely anyway. I was getting 1-2 migraines a week and now, I may have 1-2 a year. Most of the side effect seemed to have faded with time as well. Very, very pleased with this medication.”
“2 years ago I was experiencing blurry vision in my left eye. Still ongoing tests with the help of my neurologist who put me on Topiramate. Throughout these two years I've gone from 25mg up to 200mg which I only started a couple of weeks ago. I'm now in my early 40's and since having my teenage son I was unable to shift the weight also. Before taking the Topiramate I was 16 & a 1/2 stone & only 5ft 4inc. Today I weigh 14 stone. I do have some side effects. Tiggles in my hands and feet & my nose gets runny or blocked up. I still get the occasional headache and I'm still having problems with vision and what I call 'episodes'. The doctor has ruled out diabetes, however MS runs in my family. But until I get my last results back from the hospital, I'm still baffled as to what is going on with me. I just thought that I would share my experience with you all.”
Topamax (topiramate): “After trying everything and failing to get my migraines under control, I was at rock bottom. My doctor suggested Topiramate and it has changed my life. I can go out and live a normal life, and not worry what will happen if I get a migraine or how quickly I can get home. My migraines have completely stopped since I have upped the dose from 25mg to 50mg I get some tingling in my legs but I can cope with that if it means no migraines for ever. It’s a miracle drug”
Topamax (topiramate): “I started Topamax on August 18th and my life has changed! Today is September 2nd, two weeks without a migraine is a miracle. I’m on 50mg. At first I was having a hard time at work. Brain fog is an understatement. But I would say it’s gone now. Within the first week my sensitivity to light disappeared. I actually started crying tears of joy while driving because I could finally see in the day time without migraine. And same thing at night. I don’t have to turn the mirror up anymore. I can see! I occasionally get some tingling in my hands and feet but not bad at all. I will update again on my progress/side effect in a month or two. Good luck to everyone. This has been such a blessing for me.”
Topamax (topiramate): “I started taking Topamax to prevent migraines. I take Imitrex (triptans) as an abortive when I get full blown attacks but I was getting so many of them it was ridiculous and I was always running out of Imitrex. Let me say that Topamax is a tricky med that can have very weird/unpleasant side effects. Please use it with caution. I'm rather shocked to be reading that some patients have been prescribed starting doses of 200 mg daily. Yikes! That's high. I was put on 25 mg for 2 weeks then 50 mg for another 2 weeks and did quite well on those doses. However, when I hit 75-100 mg, I felt sick to my stomach so I barely ate anything. I was also very tired and lethargic. I waited a while, thinking the side effects might eventually go away. Apparently sometimes they do but in my case they didn't. I still felt really yucky so I was put back on 50 mg. So far so good and with fewer migraines and some pounds lost. Conclusion: I do horribly on the higher doses but great on the lower ones.”
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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