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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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  • michelle1723
    michelle1723 luciana1731999

    Posted

    Yes dear, it is almost definitely the Topamax.   Very common side effect.   I saw Dr. Jerry Shapiro at NYU Medical center today in fact and he confirmed it.   He is a hair specialist.    There is something magic about that 100mg level with hair.   My daughter takes for migraine and she was taking 90mg and the shed was awful.   No one told us that could happen.   She is down now to 75 and even that reduction helped.    Our neurologist said try Selenium for Topamax hair issues.   Do NOT exceed the USRDA amount.   So we are doing that too.   She is not migraine free at 60mg, wish she was.    Do have them run your serum ferritin also, just iron is not enough.   If it is under 40 you will have hair loss.   Often the bottom end of the "normal range" is 20, but this is too low for healthy hair.    I have read 40 to stop shed, and 70 for strong regrowth.    If it is low for you try ProferrinES variety of iron, on Amazon.      BTW, almost all SSRI meds (Prozac, Zoloft etc) cause hair loss too.   As do blood pressure meds and beta blockers.   

    • luciana1731999
      luciana1731999 michelle1723

      Posted

      Thank you so much! this was very helpful, i will ask my doctor to test me for iron deficency! Again, thanks alot!
  • michelle1723
    michelle1723 luciana1731999

    Posted

    You may continue to shed for 6 weeks after you stop the med.   hair grows slow.   Anything shedding today decided to fall out 6 weeks ago.   It will be 3-6 months before you see really visible regrowth.     But it will grow back.   Eat well.   Stay hydrated.  Take a multiB vitamin.   Get adequate sleep.    If you need low dose Topamax for your bulimia I bet you could go back to 25-50 without severe impact.   Incidentally, we had far fewer side effects (she used to get awful stomach upset), when we switched to the brand name from the generic. They are not the same.    Make soups homemade by cooking the chicken carcass on low overnight to get the gelatin out of the bones.   Your body/joints and hair love this stuff...     good luck to you.    It will be ok.  
    • luciana1731999
      luciana1731999 michelle1723

      Posted

      Part2- Im actually so thankful and calm after reading all that, thank you for taking all time to give me all that advice. And i hope your daughter gets better from her migranes. Thank you so so so much
  • rpsinghsethi
    rpsinghsethi luciana1731999

    Posted

    This has only happened because you are taking topiramate for a long time. Don't worry just consult with a hair restoration expert and get the feasible solution there only. 

  • heatherwood11
    heatherwood11 luciana1731999

    Posted

    I was prescribed topiramate 25mg, took it for less than a month when my hair started falling out. I stopped taking them, my hair continues to fall out 2yrs later with no signs of stopping so if anyone figures out how to stop it please let me know. I had thick beautiful waist length hair, now it's damaged thin and balding. The people that make this drug need to stop downplaying the hair loss side effect and be held accountable, I'm so mad that this was never explained in my consultation that I'm ready to start looking for legal advice.

    • dani38474
      dani38474 heatherwood11

      Posted

      I am in the exact same boat as you!  I only took and am taking 25 mg.  I cannot believe the amount of hair I have lost.  I even wear a hair piece now. I am stopping the medication right away.  Have you had any success with any shampoos or anything else?
    • elk43059
      elk43059 heatherwood11

      Posted

      I'm with you sister!!! My hair is falling out like someone who's doing chemo treatments! Every time I wash my hair, I have handfuls of hair in the sink when I comb through it. I already suffer from thinning hair and can't afford to loose anymore! There needs to be a class action lawsuit against this company.

    • heatherwood11
      heatherwood11 dani38474

      Posted

      Yes, but anything i've used for hair loss only seemed to agitate it so instead I started taking  hair, skin & nails vitamins. I also use an oil spray during the weekdays because I'm in the Army so my hair is pulled back into a bun (cant use it when its down or it looks greasy)

    • madison47514
      madison47514 heatherwood11

      Posted

      I am taking biotin pills, I started washing my hair less, and even using oils! Ive always had very thick and long hair but now its coming out in clumps. When I shower I have to clean the drain halfway through because so much hair is coming out, it makes me want to cry seeing my hair thinning like it is. I use to work at Ulta and we had a hair care brand called Nioxin that was made for people with thinning hair. My aunt used it and said it helps her hair a lot, so I am going to buy some today to see how it works. I thought I would mention it to y'all, also try ginger root and coconut oil masks. Good luck ladies, I hope we can all get our hair back!

    • elk43059
      elk43059 madison47514

      Posted

      I saw my Dr. today and she took me off the topiramate and put me on Amitriptylin for migraines. It seems to basically have the same side effects as topiramate but no hair loss. I'm hoping it works as well for me. Now I just have to grow my hair back. Gonna try the biotin. I still think there should be a class action lawsuit against this company. I emailed 2 different law firms but never heard back but I don't give up easily. We need some kind of justice for what we've been going through. I get physically sick to my stomach every time I have to wash or brush my hair because of all of the hair that falls out and I just cry. They need to pay.

    • kathryn16951
      kathryn16951 madison47514

      Posted

      nioxin made my hair fall out at even a much faster rate; be observant as it's nit for everyone. .neither is biotin, which made my family member's problem worse.

  • teresa04071
    teresa04071 luciana1731999

    Posted

    I was on topomac for partial seizures back in 2009.  I can’t remember the dosage, but it was high. My neurologist at the time loved over prescribing and never told me about potential side effects.  After a few months of being on Topamax I noticed that I would forget what I was saying in the middle of a sentence.  Or so would pray a simple prayer and for the life of me could not remember it.  Then the awful hair loss started. I had no idea what was going. The hair loss was especially bad when I washed.  The sight of all that hair falling, clump after clump after clump was sickening. I told the neuro about it and he laughed.  He said, “oh yeah, Topamax makes you stupid. What an SOB!  I stopped the Topamax and found another neurologist.  Since then I’ve had brain surgery and  cured of the seizures, but my hair has not grown back, and I’ve tried everything.  My hair used to be so thick. I lose half my hair. The back of my head, my hair is so thin sometimes I cry. I lost more on my right side than my left.  I look at pictures of my hair from before Topamax. It was so thick, shiny, long and beautiful. I don’t have a problem with it growing long, it’s just so thin now.  It’s never going to fill in. I went to the doctor and had my thyroid checked, my hormones and iron.  Everything came back normal.  Is there anything we can do tomorrow make our hair grow back?  I was on depakote any my hair fell out with that medication also, and I lost a ton of weight. When I was taken off it my hair grew back in no time. Topamax killed my hair.  It’s hurts so bad to look in the mirror and see my scalp.  
    • kathryn16951
      kathryn16951 teresa04071

      Posted

      😓😪😥i am so sad for you and my family member who lost headful of hair and memory from topamax.

  • chey43287
    chey43287 luciana1731999

    Posted

    I was on and off Topamax for a couple years anywhere from 25mg to 200mg. Well my latest dose for the last year was 50 mg and I stopped taking it all together around Nov 2017.. well that  was over 4 months ago and my hair is falling out in gobs .. I had long thick hair and now it’s so brittle .. I don’t even like to brush it cuz more falls out .. I can see baby hair is growing in here and there but it doesn’t seem to be an end to it falling out.  I know that Topamax is out of my system by now .. at this rate I will be bald in a matter of months . Yes I believe they downgraded the hair loss.  I did lose over 80 lbs being on it   I was over 230 and now I am about 150-155. Which I’m glad I could have afforded the weight .. I still get migraines but I am at a loss.  I just try and suffer through them .. I don’t know what else to ask my doctor for but never again Topamax.    I’m am going to research what to try to have this hair loss stop . Not sure if there is anything .. I also feel like it may become a legal matter.  The medicine did not say you will have gobs of hair in your brush or your shower drain everyday. . 
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