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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) 

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  • cathyp0715
    cathyp0715 luciana1731999

    Posted

    Hi. Were you taking that medication for blood pressure? If not ,wouldn't it be dangerous to take that medicine? I'm taking biotin and it isn't working.

    • elk43059
      elk43059 cathyp0715

      Posted

      Hi Cathy. I was taking it for migraines. It worked great too and I could deal with all the weird side effects except for the hair loss. It's been 2 months now since I went off it and the hair loss continues. I too take biotin AND a multi vitamin and nothing helps. I'm so furious that my Dr. never told me about this side effect, if she had, I would have had the choice to not take it. I really believe there should be a class action lawsuit against this company because so far everyone who's taken this drug and went off of it, is still losing their hair!!! It's like the drug killed all our hair follicles, PERMANENTLY.

    • samantha4144B
      samantha4144B cathyp0715

      Posted

      I don’t have BP issues. Started on Spironolactone solely to cope with the hair loss. It’s basically a water pill and very mild. I’m prone to side effects, but had almost none with this med. 

      It took awhile for the shedding to stop and almost 6 months before my hair came back to the point that  I no longer cried when looking  in the mirror. 

    • cathyp0715
      cathyp0715 samantha4144B

      Posted

      I am going to ask my doctor about it. My hair is still shedding. I,like you, cry when I look in the mirror . I clean my hair brush out almost daily. I've started washing my hair less. I'm afraid to see the amount of hair in the drain. It really is so depressing.

    • VVVVV
      VVVVV elk43059

      Posted

      I agree, something should be done. I've been saving my hair as well. only today did I realize that my hair loss is likely from the Topiramate. I've been going off different ssri medications, believing they were the culprits. I'm now on Bupropion and Topiramate. I was about to stop the anti-depressant tomorrow, After reading the rampant reviews of Topamax-induced hair loss, I now feel that I was looking in the wrong direction. I have an appointment with a dermatologist on the 29th, however, I will be tapering off my Topiramate tonight. I'm currently on 150 mg for migraine, and 75 mg of Wellbutrin.

  • cathyp0715
    cathyp0715 luciana1731999

    Posted

    Yes I believe it is the topiramate. I havent been on the drug in 4 months and my hair is still falling out. I hate to brush it,wash it,or even run my hand through my hair. It just keeps falling out. Someone commented that the drug put my hair into the resting phase. It is very scary ..i fee like it will never end. Sorry i cant give you better news. But you are young. It may come back
    • samantha4144B
      samantha4144B cathyp0715

      Posted

      I’m sorry you’re going through this. A year after stopping the drug, my hair finally started looking okay.  For me, the  not knowing if it would  ever get better was the hardest part. 

      It’ll take a long while, but hopefully, you too will see improvement.  Crossing  my fingers and toes for you!

    • cathyp0715
      cathyp0715 samantha4144B

      Posted

      Thank you for making me feel a little better. There may still be hope for me.
    • CLH0913
      CLH0913 cathyp0715

      Posted

      Has anyone noticed scalp pain with the hair loss? I have the same problem with hair just falling out and its been 3 months since i stopped the topiarate. but lately notice a burning sensation by my hair line in front. Im starting to get worried as this is only getting worse.

  • moni2015
    moni2015 luciana1731999

    Posted

    Hello ladies,

    I have taken topiramate for 12 years -25 mg for the last 2 years. The hair loss was really bad. I have stopped taking the tablets 3 years ago and my hair never regrow. It is not falling any more but it doesn't grow back. I have tryed everything to regenerate my hair but nothing works.... 😭😢 Please take care of your hair!!

    • cathyp0715
      cathyp0715 moni2015

      Posted

      the shedding hasnt stopped. I am so depressed. i think it will never end until i am bald.

    • moni2015
      moni2015 cathyp0715

      Posted

      Hi Cathy,

      The shedding will stop. At the moment I am not losing more hair than it is normal. The problem is that the falling hair is not regenerating.... I am depressed as well and when I see the scalp it is awful....

      I used to have very thick strong black hair... at this point I am thinking to go blonde hoping that the scalp will not be so visible...

      If anyone finds a solution for this problem I would be so grateful....

    • cathyp0715
      cathyp0715 moni2015

      Posted

      I know how you feel. I have moved my part over about a quarter if an inch. It helps a little.

    • Lotus68
      Lotus68 moni2015

      Posted

      I am so sorry to hear that! I know how it feels when a doctor lies to you and does not warn you- as they should. I found that OLAPLEX was helping me. It is not cheap but it is quite a new product and it works on the scalp too. The French brand Phyto has these capsules called "Phytocyane" which have helped me too. There is also a shampoo with that name.

      I think that stress is probably the major factor. Eat well, get plenty of sleep and relax:)

      Easier said than done.

      Hopefully my suggestions are somehow helpful.

      Hang in there!!

    • teresa04071
      teresa04071 moni2015

      Posted

      same with me. Get your iron and ferritin levels checked This medication, i believe, does not let our body absorb iron, Good luck

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