Topiramate and Hair Loss: What Users Say (Page 2)

• Fre...
• October 7, 2019

For Migraine Prevention "In January of 2017, I suffered a head injury that triggered me to start having severe chronic migraines, tension headaches, and cluster headaches. I thought I was dying. I was having symptoms that I couldn’t explain, but they were very much there and extremely debilitating. I started with 50 mg in the morning and then went to 50 mg in the morning and 50 mg in the evening after a week. In the beginning, everything was great. My daily headaches, body pains were almost completely gone. I felt like a new person, I had this newfound burst of energy every morning, it was great. However, after a while, side effects started showing up. I lost 30 lbs, brain fog, depression, suicidal thoughts, stomach pain, nausea, constant diarrhea, bad skin, hair loss, irritable, indifferent to everything. I have now been off the drug for about 2 weeks, and I’m starting to feel more like myself. I am having some side effects of being irritable and depressed, but have only had a couple of headaches, which is good."

• ZZZ...
• Taken for 5 to 10 years
• February 27, 2020

For Migraine Prevention "I have mixed feelings about this medication. After spending time on propranolol extended release for a few years until the side effects from low blood pressure became intolerable, I started taking topiramate at a low dose but have gradually ended up taking 300 mg per day, split into 100 mg evening and 200 mg morning. I still have about a dozen migraines a month. I'm nervous about taking more topiramate because of what I have read about kidney stones, hair loss, and so forth. I already have brain fog, altered taste, word recall problems, and paresthesias. If I were not taking it, I would have excruciating migraines every day. Nothing else seems to help. Wish me luck."

• sha...
• July 12, 2016

Topiramate for Migraine Prevention "I took this medicine because I was having severe headaches every day and tried everything. My doctor put me on Topamax, it will take your headaches away and remove the weight. I never felt bad, but I had a hard time remembering simple things, such as coworkers' names and what measuring cup to use for wet and dry items. I could never remember the words I needed to carry on a conversation. I stopped taking this medication because I could not function at my place of employment, not to mention the short-term memory loss and losing my hair was crazy. I truly think that so many people get caught up with being able to stay so thin that they keep taking it. I took 50 mg in the morning and 50 mg at night. Not worth it."

• Pin...
• Taken for 1 to 6 months
• August 3, 2016

Topiramate for Migraine Prevention "I've been on Topamax for going on 3 1/2 months now and met with my doctor twice, telling her I absolutely could not be on this medication because I could not perform my job duties at work. I had a very difficult time comprehending very basic stuff. I was put on it for my headaches I've dealt with for nearly 2 decades. My doctor took me off my medication I've been on for 18 years suddenly, which has worked for my headaches, and switched me to Topamax. I decided to push through because I was no longer getting my medication that worked for me, and I kept being told that the brain fog would get better, which it has the past 2 weeks. New problem is my hair is falling out in clumps. Every day literal clumps of hair fall out in the shower."

• Edm...
• March 7, 2017

For Migraine Prevention "I am a 53-year-old female. I have suffered from migraines since I was 12. I get cluster migraines and sometimes 2-3 a day after they break. My life has been on hold for the past 8 years as I couldn't drive due to migraines coming on without notice and could not even take/go see my granddaughters due to lights, migraines, you get it. So I was started on topiramate 25 mg, 1x at bed, for a week, and each week increase 25 mg till I reach 100 mg. I also suffered daily headaches, this is my 4th week. Until reading reviews, I did not know about hair loss or tingling. I have not had one migraine since starting but think I'm going to stay on 50 mg for now as they seem to work. I have noticed I can't eat much, and soda and even coffee taste awful."

• Anonymous
• July 6, 2010

Topiramate for Migraine Prevention "I suffered from chronic migraines misdiagnosed as tension headaches for 10 years before being sent to a neurologist who started me on topiramate right away. It was very hard at first to get over the fatigue, but the immediate improvement in my headaches was a life-changing experience. The weight loss was an added benefit. My hair has thinned a bit, the taste changes are mild, as are the tingling in my hands and feet (a few seconds here and there like they fall asleep-except it's in the middle of the palm or the sole). The chronic migraines (4-6 days a week) are now down to about 3 days a month, and the fatigue is no longer bothersome."

• ge3...
• Taken for 2 to 5 years
• February 8, 2017

Topiramate for Migraine Prevention "When I first started Topamax, I couldn't notice the side effects except for the tingling in my hands, feet, and face. I thought it would go away with time, but here I am, 2 years later, and it is still happening. This medication also prevented my migraines at first, then I had to be put in the hospital for 5 days to get treatment about 6 months ago, and now they are back again. If you miss even one dose, you get a whole new set of side effects as if you started the medicine that day! Before I took this medicine, my hair was so thick, and I never really noticed the hair loss side effect until now because my hair is falling out in chunks. Topamax also caused me to get kidney stones and be hospitalized for a month. The only good thing is I lost 50 lbs."

• Anonymous
• December 9, 2022

Topiramate for Weight Loss (Obesity/Overweight) "I gave this medicine a 7 out of 10 because I believe overall it is the best medication I’ve been on in regards to suppressing appetite and weight loss. But the side effect profile is rough. I started taking it because I could not stop gaining weight and eating because of my antipsychotic medication. I have a very high appetite. I started taking Topamax to help, and it worked very well. I lost 35 pounds while on it. I didn’t have the desire to eat, but I also struggled with some side effects. I had pretty significant hair loss from the medication, I struggled with menstrual bleeding for the whole time when I was on Topamax for a whole year. I got migraines every single day. It made my depression worse. My body really struggled with this medication. I got off the medication. I have gained every single pound back. I’m going to try to get on the extended-release version and on a lower dose and see if it helps with side effects."

• jus...
• Taken for 5 to 10 years
• August 23, 2016

Topiramate for Migraine Prevention "I have been on Topamax for a little over 6 years. I started at 25 mg and slowly went up to 250 mg. I experienced the weight loss, tingling, and the other minimal side effects at the lower dose but was encouraged to stay on the meds. As I increased the dose, I started having hair loss, dizziness, and 'white outs' where I would not be able to see at all for up to 20-30 seconds at a time. I also started having the memory issues. I started seeing a new neuro and we dropped me down to 100 mg. The hair loss stopped, but I still get the vertigo. I am now down to 50 mg. I suffer from eye pain in my left eye and still the random dizziness-which is horrible. Weaning off of this, I do Botox injections now for preventative with some relief."

• Gig...
• Taken for 6 months to 1 year
• August 19, 2022

For Weight Loss (Obesity/Overweight) "I have a love-hate relationship with this drug, and I'm not sure when I will be able to stop. It helped me lose over 60 lbs in a 9-month period. I want to keep losing around 25 lbs more, but I'm not sure if I can do it alone without the help of Topamax. The negative side effects are just awful, I developed this cystic acne all over my jaw and cheeks. I've tried so many products but have not managed to get rid of it, just keep it under somewhat control. What is destroying me the most is the hair loss... I'm losing so much hair daily, I can see my hairline becoming thinner, and the amount of hair that comes out in the shower terrifies me. Other side effects that have been getting out of control are my anger, lethargy, depression, and paranoia. I've tried so many things to keep these things under control, but the effects are too potent. I hope once I'm able to stop, I can go back to being normal."

• Lrd...
• September 2, 2016

Topiramate for Migraine Prevention "This is my first time taking them. I already feel the tingling in my face, hands, and feet. This is a scary feeling, and just by reading the reviews, I'm already thinking of not continuing this medication. I'm all for weight loss, but hair loss and memory loss, OMG, that's too much. I just want to feel better. I've been battling migraine headaches since middle school, and now I'm 33. Something has to give."

• Sar...
• September 13, 2016

Topiramate for Migraine Prevention "I'm still new to this medicine, but I'm still on it. I'm still in high school, so I get migraines due to stress a lot. Every morning, I'm starting to wake up super early, ready to go and super hyper. So hyper that I'm shaking like crazy to the point it looks like I have a tremor. I'm more outgoing on this medication. I am losing a little bit of my hair, but I'm okay with it. At least I don't have migraines."

• Ann...
• February 2, 2017

Topiramate for Migraine Prevention "I had been taking Topamax for a year, but have just taken myself off due to excessive hair loss, loss of concentration and memory, and sleep problems. My hair was falling out by the handfuls every day, and the concentration and memory loss were preventing me from working, as I am a translator. I have been on propranolol 160 mg daily for 2 years now and have had good results from that, with not too many side effects. I take rizatriptan when I do get a migraine, and it stops it usually. If it doesn't, I take Fioricet as well, and that works."

• Rek...
• Taken for 1 to 6 months
• June 23, 2020

For Bipolar Disorder "Took this topiramate for about 2 months. Was fine at first but still had some small manic episodes. Lost some weight, which I'm not complaining about, but also started losing my hair in large quantities. Nothing huge, but enough to fill a brush every time I brushed my hair. Switched to a different script."

• Spo...
• Taken for 6 months to 1 year
• October 24, 2015

For Migraine Prevention "This medicine changed my life. I went from bedridden to active. I still get flare-ups, but I can function in them now. My pain is greatly reduced. I no longer have constant flu-like symptoms or muscle spasms. My pain has been reduced to a dull ache and I can manage without narcotics. I unfortunately did show the rare side effect of hair loss. I solved that by cutting it short and dyeing it purple! Topamax is also sold as a diet pill, so I also lost about 40 pounds, which is helpful for a lot of fibromyalgia patients since we tend to gain weight from lack of activity or taking meds like Lyrica. In fact, I ended up on Topamax because my insurance wouldn't cover Lyrica. Best thing to ever happen to me since I became ill!"

• Esp...
• June 2, 2009

Topiramate for Migraine Prevention "I used Topamax for less than a year. I loved it for the first 7 months because it got rid of my headaches and reduced my appetite. Then I began to notice side effects that made me anxious to get off of it. My fingernails became really thin, I was depressed, and my hair was really falling out. I was taking 600 mg of Topamax, which sounds like more than a lot of people, but I found out online that many other people experienced the same symptoms on lower doses. I had to wean myself off Topamax and am starting Elavil."

• Anonymous
• June 30, 2010

Topiramate for Migraine Prevention "I took this medication for nearly two months before seeking a second opinion about my hormonal migraines. I was only having 1-2 migraines a month; however, they would last 4-5 days at a time. When the pain medications didn't help, my doctor started me on Topamax. I do a great deal of technical writing and crisis management in my job, and my migraines really got in the way. I was able to deal with the weight loss and taste changes, but the difficulty in concentrating became a serious issue. When I started losing hair, that was the last straw. If my migraines became worse, I may return to Topamax, though."

• Div...
• Taken for 5 to 10 years
• April 27, 2019

For Migraine Prevention "I took topiramate for 6 years for migraine prevention since I got more than 15 per month. I also would vomit from the pain. I was fine and lost some weight. It prevented me from bingeing on carbohydrates. I had less of an appetite. However, I now have alopecia (hair loss) and have lost 50% of my beautiful, thick, healthy hair, which I have since learned is a common side effect of topiramate. I weaned off, but my hair is still falling out rapidly. It's been over a month that I'm off topiramate. The steroid spray my dermatologist gave me isn't working. Now, I will get cortisone shots, but there's no guarantee it will work. I was tested for everything that causes hair loss, and this doesn't run in the family. I'm beside myself, I work in sales. I'm female, and hair is important to us, if your hair looks good, you look good, if it doesn't, you don't. I feel sick to my stomach over this. The two doctors I've seen aren't even familiar with this side effect, yet if you Google, that's all you see."

• Div...
• Taken for 5 to 10 years
• April 27, 2019

For Migraine Prevention "I took topiramate for 6 years for migraine prevention since I got more than 15 per month. I also would vomit from the pain. I was fine and lost some weight. It prevented me from bingeing on carbohydrates. I had less of an appetite. However, I now have alopecia (hair loss) and have lost 50% of my beautiful, thick, healthy hair, which I have since learned is a common side effect of topiramate. I weaned off, but my hair is still falling out rapidly. It's been over a month that I'm off topiramate. The steroid spray my dermatologist gave me isn't working. Now, I will get cortisone shots, but there's no guarantee it will work. I was tested for everything that causes hair loss, and this doesn't run in the family. I'm beside myself, I work in sales. I'm female, and hair is important to us, if your hair looks good, you look good, if it doesn't, you don't. I feel sick to my stomach over this. The two doctors I've seen aren't even familiar with this side effect, yet if you Google, that's all you see."

• ooh...
• Taken for 6 months to 1 year
• January 4, 2017

For Migraine Prevention "Side effects in the first 3 months included tingling feet, loss of sensation in hands, some minor hair loss, weight loss (11 kg), appetite loss, loss of words (especially nouns), and inability to taste carbonated drinks. Almost all of these disappeared after about 3 months. I am left with a somewhat reduced appetite, occasional pins and needles, and I can't drink fizzy drinks. Weight loss was short-lived. The effect on migraines was instant and measurable - reduced severity and frequency. Not to zero, but to a more manageable level. I am left with regular headaches, which I now think are medication overuse headaches that will pass as I reduce painkiller use. I still get menstrual migraines, which can be tricky to shift, but with sumatriptan, I can usually cope."

• flo...
• November 15, 2015

For Migraine Prevention "I used to get migraines twice a week that would last a day or two. Now they're down to two every two weeks that could possibly last a little more than a day. Topiramate really helped. I used to be on a lot of meds. I'm 17 now. I do experience side effects as well. I can't really concentrate as well in school. I can see that in my grades. I can't sleep well at night. I've lost weight, which is probably a good thing (30 lbs in 6 mos.), and the one that gets me the most is my hair has started falling out drastically. I don't brush my hair anymore. I used to have 8 migraine days a month, at least last month I was down to 3. These side effects are worth it to me, but every case is different."

• Sud...
• January 11, 2018

For Diabetic Peripheral Neuropathy "I was prescribed topiramate for neuropathic itch. Continuous itching all over my body caused by damaged nerves. I got every bad side effect. I can't remember simple things. I'll go to do something and forget what it was. I misspelled my own name. I had a 4.0 in high school, and suddenly I can't spell. I feel like I have dementia. My thoughts escape my mind so frequently I can't have a conversation with anyone. I feel dumb. My eyes hurt. My hair is coming out in large amounts. I want my clarity and my health back. This medicine really should not be on the market. I will never take another medicine again! It helps block the nerves, but the side effects aren't worth it."

• Anonymous
• February 6, 2011

Topiramate for Migraine Prevention "I just started taking Topamax a little over 2 weeks ago. I am up to 100 mg a day. I am starting to really notice some short-term memory issues, however, I have not had a migraine, let alone a single headache since starting the medicines. Everything has started tasting weird since starting the 100 mg dose. I used to drink at least 4 cups of coffee a day and can't stand to drink it at all. The bonus is that it has helped with the caffeine withdrawal. I am also a smoker, and it has helped reduce my craving for tobacco! I have read a lot of the posts on here and am seriously concerned about many of the side effects, such as hair loss. However, the weight loss aspect is really appealing. I haven't lost anything yet though."

• Ann...
• August 31, 2017

For Migraine Prevention "I was taking 50 mg a day, and it really reduced my migraines. I had no side effects except that I lost about 10 pounds, so that was a plus, though my weight was normal. My neurologist bumped me up to 75 mg to try to get rid of the last of my migraines, and then a few months later, I noticed my hair was falling out just like it did each time when I was postpartum. I'll have to go back down on my dosage to see if that will make my hair come back or if I need to go off it altogether, but it will take years to grow my long hair out again. ;("

• Ean...
• Taken for 1 to 6 months
• May 11, 2020

For Seizures "This drug did help to prevent my partial complex seizures. I took 25 mg a day for three weeks and tried to increase to 50 mg a day. What a change just 25 mg a day made! I had very intense side effects. I was moody. But also, I pretty much felt like I took 10 doses of NyQuil and was trying to function in my life and work in some sort of normal way. It made my eyes have weird flashes of color. And it created weird twitches in my hand and my face. As the drug would wear off toward the evening, I would get intense anxiety. Not the drug for me. My hair also started falling out."