Topiramate and Headaches: What Users Say (Page 3)

• Ray...
• Taken for less than 1 month
• September 21, 2017

For Migraine Prevention "I just started topiramate (Topamax) for my migraines and hand tremors September 20, 2017, as advised by my doctor, with the weight loss being a bonus side effect. So far, no side effects, a small headache this morning. I currently weighed in at 190 lbs, hoping to be back down to 120 lbs, my before-kids weight. Will keep everyone posted on how it works for me."

• Anonymous
• Taken for 2 to 5 years
• October 26, 2016

For Migraine Prevention "Side effects can be bad. The weight loss was great at first, but with it causing crippling anxiety, I had to add an antidepressant, which put all the weight back on even though I was still on the Topamax. I tried going off of it twice. The first time, almost cold turkey. This was a disaster. I didn't have any seizures, but my headache was 24/7 until I got back on it. The second time I weaned myself off very slowly, over about 2 months, even though I was only taking 100 mg. It worked, but I discovered that the Topamax was helping me with pain all over my body, not just headaches. Every day was a struggle. After 2-3 months off the drug, I decided to go back on it. Sure, I am less laid back, but I have a lot less pain."

• Jen...
• Taken for 2 to 5 years
• August 17, 2019

For Migraine Prevention "I went on topiramate in 2015 as I had very bad migraines that made me dizzy and also blind in my left eye. And the pain was just as bad as childbirth, yes ladies, that's the truth. I was put on 200 mg then increased to 225 mg. In one year, I went from a size 12 to a size 6, then lower than that, the 6 was falling off me. I know my doctor said you lose weight, but I was happy being a 12. So last year, I decided to come off the drug myself as I only had a few migraines in the years being on it. In the last couple of months, I wake up with headaches and go to bed with headaches. I have had migraines for 3 days now. And the weight, well, I was 48 kg, I'm now 90 kg. I've decided to go back on the drug only because my migraines have started. Also, when I was on this drug, I never drank alcohol. So there are side effects to any drug. But the good in this drug for me is far better than the worst I experienced in the past. I put up with the side effects. I can't go through it all again. Personally."

• Swe...
• September 19, 2013

Topiramate for Migraine Prevention "I'm on day 4 of 50 mg of Topamax and am supposed to up it to 100 mg on the 7th day. I've not had a migraine, but the side effects are draining me. I have headaches almost every day, and they usually turn into a migraine. But so far, in the 4 days on Topamax, I've only had to take one triptan, and it worked ASAP. I hope I can hang in there. I'd like to lose some weight too!"

• Per...
• Taken for less than 1 month
• February 11, 2021

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 doctor wanted me to try it for peripheral neuropathy. Each dose causes extreme pressure in my head, tingling in my head and 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."

• Lil...
• Taken for 6 months to 1 year
• October 9, 2019

Topiramate "This medication seemed to cause headaches instead of help. It made me anxious and caused insomnia. It did help with weight reduction as I had gained weight from other meds. But, eventually, I started to feel hopeless and depressed because of the pain. It really wreaked havoc on my moods."

• Mar...
• Taken for 1 to 6 months
• May 28, 2022

For Weight Loss (Obesity/Overweight) "I started on 25 mg of topiramate for weight loss, and then the second month my doctor switched me to 50 mg. I had horrible side effects. I experienced double vision, extreme dizziness, lightheadedness, headaches, nausea. I was unable to drive at times due to the dizziness. I stopped taking the medication a few days ago but am still experiencing the symptoms. Although it helped with weight loss, the side effects are not worth it."

• Ash...
• June 27, 2015

For Seizure Prevention "I'm happy with this drug. I've tried many epileptic drugs over an 18-month period, which did not work for me. My doctor prescribed me Topiramate for my seizures. I've been taking 25 mg per day for 2 weeks, then increased to twice per day for 2 weeks, and now I'm on 50 mg, twice a day. I've not had a seizure in over a month, which I'm very happy about! The negative side effects I get are blurred vision, clumsiness, headaches, and tingling in my hands and feet. I was hoping to lose some weight, as I read some reviews on the Internet on how Topiramate helps with weight loss, but I haven't experienced any weight loss yet. Maybe it's because I'm on a very low dosage. I'll have to wait and see."

• Kat...
• Taken for 1 to 2 years
• September 4, 2021

For Migraine Prevention "Two 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 25 mg up to 200 mg, which I only started a couple of weeks ago. I'm now in my early 40s, and since having my teenage son, I was unable to shift the weight also. Before taking the topiramate, I was 16 and a 1/2 stone and only 5 ft 4 in. Today, I weigh 14 stone. I do have some side effects: tingles in my hands and feet, and 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."

• But...
• Taken for less than 1 month
• February 5, 2018

Topiramate for Seizure Prevention "My doctor put me on Topamax because I could no longer afford Lamictal for my bipolar disorder. It was the worst experience of my life. It gave me a severe headache, loss of coordination -- if I was walking forward, I would suddenly start walking on my tiptoes in a sideways direction. I couldn't spell or form sentences. I had slurred speech, and my eyes were glazed over. I also had mild anxiety the whole time I was on it. The only good thing was that I literally had no appetite and lost a lot of weight. I only took it for about ten days a week and went back to Lamictal. I'd rather be poor than have to be on Topamax."

• Dis...
• Taken for less than 1 month
• October 17, 2021

For Bipolar Disorder "I started taking a very low dose of topiramate and started having awful, disturbing nightmares every night. I was also vaguely drowsy and confused all the time, which was interfering with work - I sometimes appeared slightly stupid when interviewing people. When the dosage was increased, I started having pain in my eyes, a bad headache, and nausea. It was the weekend, so I couldn't reach my psychiatrist. I called the pharmacist, and he told me to go to the hospital right away because this was a side effect that could make me permanently blind if not addressed quickly. Needless to say, this was a traumatic experience, and I would not recommend taking this drug."

• Pix...
• Taken for 2 to 5 years
• March 9, 2019

For Migraine Prevention "I've been on Topamax off and on for years. I was off for six weeks and had a headache or migraine every single day. I called the doctor and asked her to call it in. I've been back on it for a week. 200 mg a day; I take it at night because it makes me sleepy. So far this round, anything with any amount of sugar tastes overly sweet. Anything with salt tasted like a salt lick. Mostly sticking to natural foods as they can be tolerated. Cigarettes give me a headache (bonus!). The overall headaches/migraines are getting better. The last time I was on it, I had to stop because I had a constant yeast infection."

• Ban...
• Taken for 1 to 6 months
• August 12, 2018

Topiramate for Seizure Prevention "Not sure about this drug. Started at 25 mg 2x a day for 2 weeks, worked up to 50 mg 2x a day. Still having seizures 1-2 times a day. Had it upped to 100 mg 2x a day, and now I don't have seizures, but there's so much pressure in my head I feel like it's going to pop. It also makes my 2 mg Xanax ineffective. I've gone from sleeping 12 hours straight to maybe 2-3. I've lost 10 pounds, but it's horrible to say I'd rather have a seizure to release the pressure and be chunky. Calling the doctor in the morning."

• Ell...
• July 1, 2018

For Migraine Prevention "On Trokendi XR, I started having brain fog and confusion. Instead of having a full migraine, I experienced a headache halo with a heavy head feeling. I was disoriented. Waves of thinking that this medicine is tolerable, that I needed to adjust, and then feeling like I was so done. Brain fog lifted, began noticing clumps of hair falling out and no migraine, strange. I felt like I just dropped acid and I'm waiting for it to kick my ass. The next few days, my equilibrium felt off. If something took my attention off of my current task, I would forget every detail about what I was doing and would have to retrace my steps to get back. The cognitive effect of this drug is terrible. The doctor was going to get me all the way up to 100 mg on trial packs, then lay it on me at $820.00 monthly prescription. I'm so glad that I decided to get off. I have been off of it for 2 days, and my mind is starting to clear up. It builds up in your system and takes a while to flush out. My insurance plan didn't cover this med."

• Cdg...
• Taken for less than 1 month
• April 24, 2016

For Migraine Prevention "Was given this for headaches and spent the first three days sitting in the back of my closet crying. I couldn't stand noise, more than normal, couldn't stand light, couldn't stand anything touching me. Felt like my fingers and toes were on fire. Would've rather had the headaches. I drank so much water trying desperately to flush this from my system and refuse to take the fourth dose. Not the medicine for me."

• lmi...
• January 24, 2010

Topiramate for Vulvodynia "I have whole body RSD. My doctor prescribed Topamax for vulvodynia. It helped by lowering that specific pain from a 9 to a 7. However, after a week, I started having bad headaches, blurred vision, and blisters in my mouth and nose. I was taking 100 mg, 2 x day."

• Den...
• September 10, 2019

For Seizure Prevention "So I don't just use this for seizure prevention, I use it for migraines as well. I'm only giving it a 7 out of 10 because, while it has stopped me from seizing so often, I'm still twitching uncontrollably at times (which aren't seizures, they're twitches), and I'm still having my cluster headaches, which leave me with vertigo attacks once the migraines pass. As you can guess, when that happens, I have to stop whatever I'm doing entirely and just go home. My days are still 100% dictated by my head injury that's frankly unpredictable. No miracle drug, and I never expected it to be. I'm still going to take topiramate. I need to if I don't want to end up unconscious in public again. But I don't know if it's the medicine or the doctors who refuse to take me seriously. It doesn't help enough. I'm still tethered to both this and 4 to 6 tablets of 200 mg of Advil on a daily basis to keep pain at bay."

• iha...
• Taken for less than 1 month
• April 20, 2016

For Migraine Prevention "I only used this drug once because I had such a negative experience. I was prescribed this to prevent migraines and headaches, I took my dose at night. It immediately made me drowsy, which I didn't mind because I also have severe insomnia, but when I woke up, I was still drowsy and continued to be throughout the day. I was also the hungriest I have ever been in my life, and I had a headache. It took 2-3 weeks to fix my appetite after taking this drug only once."

• Anonymous
• June 7, 2014

For Migraine Prevention "I was taking 25 mg Topomax twice a day, now I switched to Trokendi XR 50 mg time capsules. The new meds seem to help a lot longer. I had to skip a month of Trokendi and go back to Topomax for insurance coverage reasons and ended up with a two-day major migraine. I had to take a second dose of Imitrex for the first time. Now I'm back on Trokendi XR, all I needed was a second approval from my neurologist for my insurance. Wish me luck, fellow headache sufferers. God help us."

• Ark...
• September 14, 2016

For Migraine Prevention "I'm a 24 y/o male and have been on Topiramate for almost a month. Started with 25 mg daily increment and increased dosage by 25 mg every week. I was supposed to make it up to 100 mg daily, but that hasn't happened. The first week was good. Second week, I did notice the pins and needles sensations all over. When I got up to 75 mg per day, my brain fog was bad, my anxiety skyrocketed, and I seemed to have more headaches. I've started to have panic attacks and have been scared to drive lately or even go to the store, which is so unusual for me. I am also sleeping hours upon hours at a time and I am also getting a tingling sensation in my face and arm, which is scaring the heck out of me. Going to stop taking without consulting a doctor."

• HTL...
• Taken for 1 to 6 months
• September 13, 2021

For Migraine Prevention "I took this for my chronic migraines (first 25 mg, then up to 50 mg). It did nothing for my migraines, sadly. My side effects were tingling hands/feet/face, like a pins and needles feeling. I also lost 25 lbs in 3 months because I had no appetite. I also got severe depression while on this. I tapered off because I am already on the low BMI spectrum and was scared how much weight I lost. I had bad withdrawal symptoms - tremors, headaches, very cold, fever, extreme nausea, vomiting. My depression and appetite improved once I got off this drug."

• Tsa...
• Taken for 6 months to 1 year
• November 16, 2021

For Seizure Prevention "Topiramate has saved me from terrible migraines and focal seizures caused by a TBI. Starting low and slow is important: 25 mg once a day for a week, then twice a day, and increased as needed. But my 3x per day seizures stopped, and I haven't had a migraine in 10 months since starting it. My hair is getting thinner; I'm taking biotin and silica. I still have headaches managed with braids, and I do search for words and stutter some, but it's totally worth it to not have the debilitating migraines. I've only had 4 breakthrough seizures in 10 months, so that's pretty darn great... and I've lost 25 lbs comfortably."

• Kit...
• Taken for less than 1 month
• October 26, 2017

Topiramate for Migraine Prevention "First of all, I have suffered with headaches all my life, and at 52, they seem to be getting worse. I found out I have hypothyroidism, and the weight gain is horrible. I’ve gained 15 lbs. My doctor prescribed me Topamax at 25 mg. Still having headaches, she changed the dosage to 50 mg, twice a day. The first day, I took one in the morning and one in the evening. The next morning, I woke up with a severe headache. Could it be from the doctor changing my dosage on Topamax?"

• SLG...
• October 14, 2021

For Migraine Prevention "I was on Topamax for 15 years. I was on it for migraine prevention, and it did slow down my migraines. I went from 15 to 18 a month to maybe one. It was a miracle drug for me! But as most drugs do, I had side effects of a mild headache daily, no appetite, and after 21 kidney stones, I said no more! I weaned myself off it in about 3 weeks. My headaches returned, and so did my appetite. I have only gained 5 pounds, but I have been surprised at how good food is again. It has been 3 months, and I have tried other medications, but so far haven't found anything that works as well. Hope my post helps others."

• mom...
• December 21, 2009

Topiramate for Fibromyalgia "It's a wonder drug - my daughter takes it and lost so much weight. Her headaches are gone, she feels like a million bucks."