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Topiramate and severe hair loss

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luciana1731999
luciana1731999

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

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  • cathyp0715
    cathyp0715 luciana1731999

    Posted

    Luciana., I was on topiramate for about 8 months..after about 2 months I started losing my hair. I had started on 25..then..50 and then 100. My hair just kept falling out. I told my doctor. She really didnt think it was topiramate but I told her that I did not want to take it anymore. I was weaned off and haven't taken it for six months and I continue to have hairl oss. I just run my hands through my hair and I get about 20 to 30 strands. I can be just sitting there a d watch strands fall out

    I hate washing my hair. Looking at the amount in the drain makes me want to cry. I started biotin 2 months ago.. o result yet.

    • elk43059
      elk43059 cathyp0715

      Posted

      Hi cathyp0715. My story is the same as yours. After going from 25mg the 1st week, it was increased to 50mg and so was the hair loss. I asked my Dr. If she knew about this horrible side effect and she just shrugged her shoulders and said "all drugs have side effects ", in which I replied, "you should have told me about this so at least I would have had a choice whether or not to go on it". I've been off it for 2 months now and I'm taking Amitriptylin for migraines and it works great but the hair loss is still horrible. I take vitamins and biotin but nothing helps. I have a baggie I keep putting the hair in that falls out every time I wash my hair and I cry every time I add more to it. I started doing this in hopes that I can find an attorney who will take this case to sue the makers of this drug and I won't stop till I find one. I'll be watching tv and feel something on my arm and there it is, another hair that just fell out. 😢

    • cathyp0715
      cathyp0715 elk43059

      Posted

      I feel like it will never stop. My hairline on the sides are gone. Good idea about saving the hair. I'm going to do that. I kept thinking maybe it's not as bad as I think and the last time I went for a hair trim my stylist commented and I started to cry. I am keeping my hair short ..thinking I dont want the weight of my hair to make more hair fall out. Sounds crazy..right? But I'm desperate

    • elk43059
      elk43059 cathyp0715

      Posted

      I Literally have 2 bald spots right in the front of the top of my head. I've tried styling my hair a different way but it doesn't matter since I lost so much hair, that you just see scalp everywhere! I've found if I gently wash my hair and let it air dry without combing through it, it's not as bad. Once it's dry, I brush it very gingerly. My fight to find a lawyer will continue and I will use all these testimonies from all of you, to start a class action lawsuit against this company.

    • miyo236
      miyo236 elk43059

      Posted

      Please let me know if you are successful

      in obtaining a lawyer to do a class action suit. I am suffering from hair loss like you and am interesting in class action suit.

    • annie73825
      annie73825 cathyp0715

      Posted

      hi, i only took it for 3 weeks at 25mg and noticed my hair was falling out by handful and my shower would look like there is a rodent laying in it after i showered. i used to have full beautiful hair and now i can see my scalp! just 3 weeks on it!! let me know if you get the lawsuit going because i will jump on board with you!

  • elk43059
    elk43059 luciana1731999

    Posted

    I took topiramate for migraines at 50mg and the hair loss was horrible. I've been off it now for 2 months now and the hair loss is still there. I take vitamins and biotin but nothing helps. I've read stories about people who have been off it for 4 months and still are losing hair.

    • myra62661
      myra62661 elk43059

      Posted

      im only on 25mg twice aday and all my hair is falling out also

  • teresa04071
    teresa04071 luciana1731999

    Posted

    The hair loss will stop.  Even worse than the hair falling out, at least for me, the hair never grew back. My hair loss due to Topomax started nine years ago.  I had no idea that it could be Topomax until I was taken off it.  I lost half my hair.  I get sick to my stomach when I look in the mirror an see my scalp.  Literally can’t breathe just thinking about it.  I tried hair vitamins which I don’t think do much.  I’m on Biotin and I started using sulphate free shampoo.  Anything just to try and keep it healthy.  I look at pics of my pre Topomax and now, I don’t look like the same person.  The neurologist who put me on it knowing the side effects will rot in hell, along with all the others who don’t warn their patients.  Topomax also makes you, my ex doctors words, STUPID.  He had the nerve to say that to me after I complained of going blank in the middle of a sentence.  He laughed and said, yeah, the stupid drug, we call Topomax dopomax.  Low life SOB!
    • cathyp0715
      cathyp0715 teresa04071

      Posted

      I agree about the going blank in the middle of a sentance. It's like I cant find the right word. I started thinking I was in the early stage of dementia. I realized it had come on shortly after I started to take this horrible pill that should be taken off the market. I interview clients daily,and I am so embarrassed when this happens to me at least once during the process.

  • samantha4144B
    samantha4144B luciana1731999

    Posted

    I had severe hair loss on Topiramate. I was on it for 6 months. Tried biotin and rogaine. No improvement.  Came off the drug and started Spironolactone, which is a prescription blood pressure med.  One month later, the shedding stopped. A year later, my hair is back. 

    It was a horrible ordeal. One thing that helped was Toppik hair fibers.  They filled in the bald patches, which gave me enough confidence to leave the house. 

    Good luck to anyone dealing with this side effect. There is hope. 

    • elk43059
      elk43059 samantha4144B

      Posted

      I've been off it now for 2 months and I'm still losing hair. I was taking it for migraines and it worked great but the hair loss was and still is horrifying. I now take Amitriptylin which works great.

    • elk43059
      elk43059

      Posted

      Toppik works ok if you only have a little thinning here and there but when you have total bare spots, it looks like crap.
    • samantha4144B
      samantha4144B elk43059

      Posted

      I thought it would be faster, but it took almost 6 months for the heavy shedding to fully stop.  
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