Topiramate and Headaches: What Users Say

• Ell...
• Taken for 1 to 6 months
• September 18, 2018

Topiramate for Weight Loss (Obesity/Overweight) "3 months ago I was 259 lbs, and now I am 219 lbs. I take Topamax daily, and Phentermine 1-2 days a week sometimes, and it’s helped not only my mood but my obsessive thoughts about eating and food. I don’t sit and think about it all day long. I also had an energy drink addiction and broke it because all carbonated drinks taste flat! All soda tastes awful!! I do get bad headaches if I miss a dose. Don’t miss your pills. I used to get bad headaches weekly but not since taking this medication - they don’t come around anymore. I’m topped off at 50/twice a day, but I’d happily take 100/twice a day. I do get brain farts, but after 3 months it’s not as bad."

• Joj...
• December 31, 2019

For Weight Loss (Obesity/Overweight) "I started topiramate for headaches due to head injuries. I was also overweight, at 290 lbs. My neurologist started me on 50mg of topiramate, and I lost 40 lbs. Awesome for weight loss, but the headaches are still there, so I got upped to 100mg. Then I lost another 50 lbs, I was so happy. But my headaches were not leaving me alone. So I got upped to 200mg, and that's when everything stopped. It was done, and I have gained back some of the weight that I had lost. Still on the 200mg but I'm not losing any weight."

• Anonymous
• Taken for less than 1 month
• February 28, 2020

Topiramate for Migraine Prevention "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."

• Lov...
• Taken for 1 to 6 months
• April 30, 2016

For Weight Loss (Obesity/Overweight) "I was prescribed topiramate for daily post-concussive headaches, and I also needed to lose weight. The first three weeks were really rough, and I was unsure if I could take this medicine long-term. I started off with 25mg the first week, 50mg the second, 75mg the third, then 100mg as my permanent dose. I took it before bedtime as instructed, but I had next-day drowsiness so bad that for three weeks I felt like I was going to faceplant at any moment. Also, the nausea was so bad that I barely ate. Thankfully, both of these side effects stopped after about 3 weeks as did most of my headaches. I've also lost 22 lbs in 2 months. The best part is that it has given me control back in that I eat smart and don't have unhealthy cravings."

• Aun...
• Taken for 1 to 2 years
• September 8, 2019

Topiramate for Migraine Prevention "I have been through so much with this medicine! I ended up dizzy, confused, very irritable, with 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, sometimes it was so bad it felt like the road was moving, not my car. I had memory loss and couldn't say things correctly or even make deposits at work, I felt as if my brain was trying to come out of my skull. Because of this, I had to go to the gynecologist because I had abnormal periods and to the neurologist because of my head! I also had breast, arm, and leg pain to the point where I 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, and I was scared I was losing my mind and had something major wrong with me. This medicine wreaks havoc on your body, brain, and eyes! NIGHTMARE DRUG... I stopped it 3 days ago and I'm getting better already... I'm 42 and a healthy person, or I was!"

• Chr...
• Taken for 1 to 6 months
• August 25, 2018

Topiramate for Weight Loss (Obesity/Overweight) "I gained a lot of weight from depression medications. They put me on Topamax to fix that. I’ve been on it for several weeks. Twice a day, 25 mg. Now the first day, I immediately noticed an appetite change. I haven’t craved food all day, every day. I haven’t craved as much junk or sweets. And I have dropped a little weight. So it definitely works wonders. I am definitely struggling with the side effects, so I think I am going to wean off it. As much as I’d love to continue to eat regular amounts and lose weight, the side effects are too much. Before I started this, I had tingles in my hands and feet, but this intensified a LOT. I’m also having a lot of head pressure, tiredness, and I feel functionally slow. I feel like I can’t think, can’t remember anything, can’t do simple tasks. Hopefully, there is another medicine that can have the same effect for weight loss and appetite without these severe side effects."

• Fly...
• March 28, 2008

Topiramate for Migraine Prevention "WONDER DRUG!! Every drug has side effects, people! The side effects from this one wore off for me after about 2 months. You gotta stick through it to get used to it, once you do, it's totally worth it. I went from having almost daily headaches and weekly severe migraines to maybe 1 migraine every couple of months that, even then, it was very minimal. Totally worth trying!"

• Lif...
• January 18, 2021

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 antihistamines. I went through horrible Topamax withdrawal, which left me nauseous and with the worst headache of my life."

• Gin...
• Taken for less than 1 month
• September 12, 2019

For Weight Loss (Obesity/Overweight) "I was put on topiramate to help with a plateau on losing weight. I was on it for 4 days and experienced severe side effects. Four days after, I went to the ER for confusion, trouble speaking, dizziness, and headache. An MRI shows I have a brain lesion, not sure at this point if I actually had a stroke."

• Pat...
• July 25, 2015

Topiramate for Migraine Prevention "I've had migraines since kindergarten. They have become increasingly debilitating in adulthood, and sometimes I would average 15 headaches per month! My life revolved around my migraines. I tried everything to stop them. When my doctor talked to me about Topamax, I was thrilled. It took me two years to get to a dosage that managed the headaches and auras, but now the only time I get a migraine, it's weather-related. I use Relpax to relieve it. Topamax has been a Godsend for me!"

• Sti...
• December 30, 2016

Topiramate for Weight Loss (Obesity/Overweight) "I am experiencing the tingling every day in my fingers, I am not hungry. I did have the brain fog to where I wouldn't drive. I wouldn't make any decisions about anything without talking it over with someone I trusted first. I am now up to 75 in the morning and at bedtime, and I still have the tingling, but the fog has been lifted. The headaches are so much less, but I have only lost 3 pounds. Can't seem to stop smoking, even with this. Still hoping this will help with the smoking. Wish me luck."

• Emm...
• June 8, 2019

For Bipolar Disorder "I've been on Topamax about 20 years for bipolar. I went on it as a trial, and I can honestly say I've never looked back. I take 400 mg each morning, although I'm meant to take it in 2 separate doses, 200 mg in the morning and 200 mg at night, which I have never done. I came off it briefly during my two pregnancies, although when I did get pregnant, I was still on it and was concerned about birth abnormalities. Both of my babies were born perfect. My GP weaned me off it in both pregnancies during the first month after I found out I was pregnant. I was concerned about side effects of coming off it, but I didn't have any. After both my babies were born, I suffered from post-natal depression and went straight back onto it, meaning I was unable to breastfeed, but I knew I had to feel well to be a mom. 20 years on, I still take Topamax, it's my lifeline. Without it, or if I take it a couple of hours late, I'll get a headache. Yes, my hands and feet are always cold, but to feel mentally stable is worth that!"

• Anonymous
• Taken for 2 to 5 years
• July 13, 2014

Topiramate for Migraine Prevention "I have been taking Topamax for 2 years now after trying many different medications. Yes, I got some of the side effects, mainly thought process was slow and word confusion. That was really frustrating, it is worse under stress. The all-over tingling is not as bad anymore, but I do not have headaches every day. You have to weigh your options."

• dim...
• Taken for 2 to 5 years
• November 11, 2015

Topiramate for Migraine Prevention "I was taking this medication for over two years. I had to stop it because my memory is terrible. Places I have been going for over ten years, I forgot where they were and how to get there. This medicine has messed up my life, even after I stopped it, my memory still hasn't returned. I deal with this every day, and it scares me so bad. I have to write things down every day in order to remember. It did help with my headaches a little, but if I had read up on this medication before I started, I can promise you I would not have taken it."

• all...
• December 15, 2016

Topiramate for Migraine Prevention "I have only been on it for about 6 days and already seen an incredible difference. I had a headache every day for a year and a half and got bad migraines about 2-3 times a week. I have not had a migraine yet, and my everyday headache has calmed down. When I first started, it did make me very drowsy, but that went away as I got used to it."

• Won...
• Taken for 5 to 10 years
• August 20, 2014

Topiramate for Migraine Prevention "I've been taking Topamax (brand) for approximately ten years. Due to severe migraines, this was the only medication to prevent what had been debilitating headaches, nausea and vomiting, sensitivity to light, smell, sound, movement, and dizziness. After several years, my insurance refused to continue payment of the brand until I tried the generic tablets. After 3 days, the original symptoms returned. They finally approved continued payment of the brand, and now, two years later, they again have refused to cover (pay) for the medication, although it falls under the plan. For three months, my neurologist and I have issued appeals with no clear explanation of the denial. I would just like to again take meds to rid myself of this pain."

• Ves...
• February 29, 2020

For Migraine Prevention "If you have vestibular migraine, you can understand the pain. First attack, this drug worked amazingly - got rid of the vertigo sensations. Got me out of bed so I could feel the cold air and see people. It also got rid of the horrible headaches, which soon came after the vertigo! Dull, numb, stabbing sensations. I’m not talking 2 days or for a couple hours. I’m talking 2 weeks nonstop, from when you get up to when you go to bed! Second attack happened 4 years later. Topamax got rid of the dizziness straightaway again, but the headaches are still with me! The pain is the worst for me. 2 weeks in, doctors can't do anything. Lost my job, mortgage to pay! All my love goes out to people who suffer this baffling condition! I feel all your pain and send you all the love. You are not alone!"

• Sha...
• Taken for less than 1 month
• April 5, 2023

Topiramate for Weight Loss (Obesity/Overweight) "I was prescribed Topiramate 25 mg twice a day and Phentermine 37.5 mg as this is FDA-approved as an off-label drug. However, the first day I took it, I couldn't sleep all night and was so restless the entire night. My doctor said to take just the morning dose only. I took it for 7 days and noticed blurry vision in both eyes, headaches, bad eye pain, high pressure, alopecia-terrible hair loss. I called the doctor's office, and they told me to go to Immediate Care Center and evaluated me. They did a thorough eye checkup, put dye in my eye, and reduced eye pressure. I was told to discontinue this medication, Topiramate, as it does mess with the eye anatomy. I was also asked to go visit my optometrist for a thorough eye check, to which he too said to not take this drug. To lose weight and have these vision and other related side effects is totally not worth it. The more I read about this drug, I was finding out that people gain all the weight back that they lost and have these side effects as well."

• mel...
• April 2, 2008

Topiramate for Migraine Prevention "There are a few ways to get rid of one of the most annoying side effects, the tingling hands and feet. Potassium- I used to eat a banana or drink fruit juice high in potassium. All of my side effects went away after 2 years on Topamax. It is hard to wean off of. I have not taken a pill for 2 months and have far fewer headaches than before Topamax! Great drug! I lost almost 30 lbs but once we found the right dosage I leveled out and stayed at that weight for a year before weaning off."

• Cry...
• January 4, 2015

Topiramate for Migraine Prevention "I still get slight headaches once in a while and use Excedrin Migraine with the Topamax, but it's nothing compared to what I had. The side effects go away, and the ones that don't, you get used to. I still have memory problems, so I had to lower the dose."

• Lad...
• March 23, 2015

Topiramate for Migraine Prevention "I've been on Topamax for quite a few months now, and I love it for the most part! I have only had the occasional minor headache, but the side effects are good/bad. The good ones in my book are the weight loss and carbonated beverages and other sweet things tasting horrible. The bad side effects are tingling, usually in my fingers and confusion/'blonde moments,' but those are usually more pronounced the more tired I am. I can live with the bad side effects so much easier than I can a migraine every day!"

• Prp...
• February 18, 2020

For Migraine Prevention "I was prescribed this topiramate for high pressure headaches. I took one dose, 25 mg, thinking if it’s bad I’ll simply quit, if it works, I might lose weight. Within an hour, my ICP-head pressure-shot up. It started to feel like my brain couldn’t fit in my skull. I went to the ER, where I experienced the worst headache of my life. Seriously. My neck, jaw, and shoulders also hurt very badly. Doctors thought I had meningitis. I honestly didn’t know if I was going to pull through. I’m not into drama, it was very painful. I was transferred to a larger hospital 120 miles away, where I had to get a lumbar puncture done. Fortunately, I didn’t have meningitis or an infection. I slept all day. They gave me nortriptyline and discharged me about 9:30 last night. Had I been in high pressure headache, I think this drug would’ve worked. It didn’t for me. Use caution. If experienced patients tell you a drug is not good, take that into consideration. Prayers for everyone living in pain."

• Mar...
• Taken for 6 months to 1 year
• May 6, 2017

Topiramate for Migraine Prevention "The drug would get a 10 as it worked miraculously for me. In my case -- and this probably won't happen to you -- the medication caused me kidney stones, the first of which was agonizing and led me to stop using the medication. Then the headaches resumed. I was willing to take an occasional kidney stone attack as a tradeoff for frequent migraines, so I went back on the drug knowing the risks. Unfortunately, I peed gravel constantly, oddly without pain, but it was a warning. I'm now off the drug. If it did not cause me that side effect, I would have remained on the medication as it was, again, close to 100 percent effective. Not everyone responds the same way; your experience will probably be different."

• Tos...
• Taken for 5 to 10 years
• February 25, 2017

Topiramate for Migraine Prevention "Was on Topamax 200 mg 2x a day for eight years. It cut back on my daily migraines. Went down to about 2-3x a week. I lost 125 pounds in the first year I was on it. No appetite. Food tasted metallic, flat, or just weird. I did get one kidney stone. After years of being on a high dose, I started getting chest pain. My doctor took me off Topamax about 7 years ago. I had bad withdrawals after weaning off, no seizures thankfully. Migraines have been daily again for the last 18 months. Tried to go back on Topamax, but I can't tolerate it anymore. After one 25 mg tablet at bedtime, I woke up with a severe headache, dizziness, and nausea. The next night I took one tablet, and the side effects were increased. I stopped. Side effects were bad for two weeks. No thanks."

• Anonymous
• September 5, 2009

Topiramate for Seizure Prevention "I've been on this medication for 3 years now for my seizures (50 mg/2 daily) and have not had any episodes since. At first, I would get a tingling feeling in my fingers and toes (like soda fizz), but it went away once my body was used to the drug. Recently, my pharmacy switched me to the generic version, and I hated it. Immediately that first day, I would get crazy headaches, feel dizzy, sick to my stomach, and I couldn't concentrate on anything. I went back to my neurologist and got a new prescription for brand name only and have not had any problems since. I was also still using the drug during my recent pregnancy and am happy to report no problems or side effects whatsoever."