Topiramate and severe hair loss
Posted , 39 users are following.
i am 18 years old and have been taking topiramate since last year for my bulimia. I started with 25 mg a day, moved to 50mg a day and stayed like that for a while.
I have no problems with eating disorders anymore . Around winter holidays this year my psychiatrist told me to take 100mg a day.
For about 6 months i have been noticing severe hair loss , i had lots of super thick hair , now its super fine and thin.im even starting to have a bald spot on my crown area.
I sometimes run my fingers through my hair and about 25 hairs will come out.
I have been dealing with this for about 5-6 months and had several blood tests and nothing is wrong with me , i have no thyroid, inmune , hormonal o vitamin deficency problems.
About a week ago i started seeing a new psychiatrist and after checking all my extensive blood tests he told me that there was nothing wrong with me that could cause me the hair loss.
Then he checked his manual and told me that the topiramate could be causing the hair loss and now im slowly getting off it , im on 50mg a day for 10 days and then i can stop taking it.
But still i am so worried about my hair loss , can it really be the topiramate? If it is, will it take long for my hair to stop falling and grow back once i completly stop taking it?(since i took it for so long)
0 likes, 69 replies
ron97 luciana1731999
Posted
Hi Luciana,
Thanks for sharing on here. I have an interesting article I came across that may be helpful for you:
https://www.yourfutureishair.com/blog/thickerhair
Lotus68 luciana1731999
Posted
I have been on topamax for 10 years to prevent migraines. That never worked but I definitely did notice some hair shedding at 100 mg daily. Nothing much under that dose.
I just looked at the side effect warnings and "alopecia" is on the box as of March 2019!!
So be warned, this drug has also impaired my memory and cognitive functioning!
Dopamax indeed! STAY AWAY
cathyp0715 Lotus68
Posted
they are finally admitting it. I looked at their responses and they always denied it.
teresa04071 luciana1731999
Posted
after ten years of suffering and crying, yes its depressing, ive FINALLY found out what is wrong this nasty medication drops our iron and ferritin ←spelling, so low that our hair falls out because every cell in our body needs hemoglobin, which iron carries in the blood and transports to all cells when we are iron deficient we are anemic anemia cause hair loss, shortness of breath, fatigue, zaps your energy and your overall wellbeing i had all of these symptoms, doctors are not really bright when it comes to iron deficiency anemia hellooooo MDs out there, low iron and ferritin levels cause hair loss and i believe this med is the culprit i had lost more than half of my hair, i was devastated but now its growing back after two months of being on iron .... and vitamin C because your body absorbs iron better. did a doctor tell me this, nope! my years of research did. Please do not start taking iron unless told by a doctor iron toxicity is very dangerous as it can build up (iron overload) which can be fatal. Get bloodwork done the doc needs to check iron level, ferritin levels. PLEASE MAKE SURE IT IS CHECKED, because iron could be in range but ferritin low. also have red blood cell count checked, low count is a sign of anemia. you need your hemoglobin and MCV, Hematocrit checked. my levels were in the low range. For hair to grow, iron and ferritin should be in the middle to high range. Please, you guys, get checked for anemia. My old PCP was a bleep because he did not take my symptoms seriously. if your pcp puts you on iron make sure he or she draws bloodwork to check levels. i am on a high does because my numbers were so low. I hope this helps all of you who are suffering from hairloss due to that nasty hair thief poisonous drug. REMEMBER, DO NOT SUPPLEMENT WITH IRON WITHOUT HAVING YOUR LEVELS CHECKED BY A DOCTOR FIRST, AND ONLY IF HE PRESCRIBES IT. GOOD LUCK
kristin27045 teresa04071
Posted
Oh wow, this makes so much sense now! 3 years ago i had excessive hair shedding. Had my bloodwork done because I also have low thyroid. My serum iron looked ok but my ferritin was 15!! I did so much research! My doctor didnt think it was the cause of the hair loss but did prescribe an iron supplement. She said it was from stress. I just knew it was the low ferritin. My hair stopped falling out and filled back in over time. Now, presently, I am on Topomax and my dose was just raised to 125mg and I have lost so much hair in 3 weeks! I'm just now putting it all together, and seeing your post about it causing low iron levels.. it is making total sense! I am getting bloodwork done this week, and emailed my doc that I want off this med!! I was not told this was a symptom! It was not listed on the paperwork nor on their official website. If it had, I would NOT have chosen to go on it for migraines! OH it is so frustrating! I am so scared my hair will not grow back like many others have shared!
kam60832 luciana1731999
Posted
one of the 'side effects' of topiramate is weight loss and alot of people claim they don't eat much on it and food tastes different. could this be the cause of hair loss and people just aren't getting enough nutrition?
cathyp0715 kam60832
Posted
unfortunately not in my case. the only thing I lost was my hair. i think it is possible though. when I was young I went on a really low calorie diet....I started losing my hair and my menstrual cycle stopped. My doctor told me it was because my body was in starvation mode and it stopped non essential functions.
myprettycabinet luciana1731999
Posted
2 years on, how did this all turn out? I'm down to two potential medications for the cause of my hair loss, but I'm on only 25mg of Topiramate for only a month or so. I'm currently waiting to hear from my doctor about why she put me on it. I'll be stopping the other medication too, but this article is enlightening. When I brush my hair, the hairbrush looks like it normally does after a month...
-Jamie
kathy38947 luciana1731999
Posted
I was off and on Topiramate for several years. The last time was for 200 mgs daily for 2 yrs. I had a lot of hair loss and suspected it was the medication, but I didn't see that side effect listed anywhere. A friend recommended going off of it and using a CBD product instead - I was taking it for migraines. once I stop taking the topiramate my hair stop falling out. The CBD oil kept me migraine free. However, my hair never grew back. It’s been 2 1/2 years now, and I’ve used Rogaine every day. My hair still hasn’t grown back. I’m afraid to stop using Rogaine because I feel like if I do, I’ll lose even more hair. At least my hair loss stopped when I stop taking topiramate. If someone does do a class action suit I would gladly join it.
moni2015 kathy38947
Posted
kathy, I hope you will be luckier than i am... i am off topiramate for 4 years now and my hair never grew back. i have tried rogaine, castor oil and anything you can think of. nothing worked. at the moment i am trying to learn how to live with it... 😦(
kathy38947 moni2015
Posted
That is so disheartening.
kathryn16951 luciana1731999
Posted
if anyone is interested in a class action suit, let's get together and find lawyers! i'm so angry at topamax ruining my loved ones' lives! we weren't warned!
kathy38947 kathryn16951
Posted
Count me in!
rebekka11379 luciana1731999
Posted
I'm on cabemazepine at the min and it's bad too. they are taking me off to go on topiramate and I'm so nervous about the side effects. any advice? xx
chey43287 luciana1731999
Posted
I'm in if theres a class action as well . i was on it for years and lost so much hair it was all over my house . in everyones things etc .. i am very fortunate that i have thick hair but omg . that is such a bad side effect and they did not let you know . still dealing with it 2 years after i was taken off of it