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Medications & Prescription Treatment

Topamax and Hairloss

  • By iluvlicorice

    I’m going to start a new thread on this…I’m hoping for some input on your hair loss experience with Topamax.

    Any long term users? How much hair did you lose? Did it finally taper off? (ie: you didn’t go bald?) What kind of dosage are you on?

    How many of you quit because of the hair loss? (what dosage were you on?)

    I’m trying to decide if I should stay on it or go off it. It’s been so helpful..yes, side effects. Manageable…until the hair loss.

    Help please and thanks!!!

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  • By Nancy Harris Bonk Moderator

    Hi iluvlicorice,

    Thank you for bringing up this great topic! It’s been a long time since I took Topamax and don’t recall hair loss being an issue. I have on the other hand, heard from other patients who have this problem while taking it. We do have an article on hair loss and Topamax here; https://migraine.com/blog/caution-taking-this-drug-may-cause-part-one/.

    Hopefully others will be along shortly to share their experiences with you.

    I hope this helps,
    Nancy

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  • By Ginalcb

    iluvlicorice, I took Topamax for years on the max dose of 200mg a day. The only thing I experienced was loss of appetite. Check all your medications becasue a lot of them have loss of hair side effect. For example Inderal or generic Propranolol causes hair loss. I have been on this medication for 20 years and the hair loss has tappered off considerably but the loss was never noticable by me or my hairdresser, ie bald spots.

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  • By Maddy

    YES, without question Topamax is known to cause hair loss. It seems to be worst over 50mg per day. Many people, but not all experience this side effect. Family member did have profuse shedding while on 100mg. It abated at 50mg, with selenium 100mcg added. But some people have to go off it entirely. The good news our neurologist said is it will grow back because it is the med. A highly regarded dermatologist who specializes in hair issues at NYU Langone confirmed the same, has seen many Topamax patients with hair loss. NAC (600mg w selenium and molybednum – now foods brand) and acetyl-glutathione and active B vitamins including R5P Riboflavin and P5P B6 helped us cut back the dosage and remain mostly symptom free (migraine).

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    • By iluvlicorice

      Thank you for all your replies. I have tried to get down to 50mg a day (from 100mg) but it didn’t go so well…I did however successfully make it to 75mg. (I will take it as a small step).
      I am currently wearing hair extensions (don’t judge) as I’m just not ready to cut it all off quite yet.
      I will try to add the vitamins suggested above to my already big list of daily ones….I’m willing to try anything at this point.

      I so so so appreciate your responses…thank you, thank you, thank you for taking the time out of your day to help me.

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    • By meagan234

      I am so glad to see this post! I have been taking this medication for at least a year now. With the dosage going up each time I’m to 150mg now. For the last 2 months for sure I’ve noticed my hair thinning… then slowly it started coming out, breaking, becoming more frail. I just began thinking it could be the meds. I take vitamins already ro try and help but I’ve lost so much hair I’ve even tried cutting it shorter… after reading this I think it’s time to talk to my neurologist about getting off. Is it something you can just stop all at once?

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    • By GardensatNight

      You should definitely talk to your neurologist. My understanding (I am not a doctor) is that just like you have to taper onto Topomax, you have to taper off.

      I’m on 100 mg, and have been for almost 4 years now. I noticed my hair thinning after being on it for maybe 8 months, and continue to notice it shedding in the shower. I cut my hair short to help make it less obvious (and also because of scalp pain caused by a different condition.)

      I also take B-complex and Biotin, which may or may not be doing anything.

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    • By meagan234

      I have made an apt. I go Monday, hopefully he will see how bad the hair lose is and honestly it has stopped working like it was in the beginning…

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    • By Nancy Harris Bonk Moderator

      Hi meagan234,

      I’m sorry to hear about your hair loss. I understand how frustrating that is as I’ve experienced it as well, but not due to Topamax. I also take B 12 and Biotin which seems to help a bit with hair loss.

      As GardensatNight mentioned, Topamax is a medication that needs to be tapered off slowly and not suddenly stopped. We do have a general informational page on the drug which says it’s not a good idea to stop it suddenly without discussing it with your doctor: https://migraine.com/migraine-treatment/topamax/.

      Have you had your thyroid checked recently? Hair loss can be a symptom of thyroid dysfunction.

      Let me know how you made out at the doctor.
      Nancy

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    • By meagan234

      Well I went to both my neurologist and obgyn today. The neurologist did not think that my hair loss was from the medication and he actually upped the dosage to 200mg… I really dont know how I feel about that. So I might just start taking biotin and try to taper myself off of this last round of 150mg tables. The obgyn took blood and Is going to check my thyroid in the mean time.

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  • By mela14

    I was never able to tolerate it long enough to notice but have hear about others that had hair loss.
    At least it’s helping the migraines and in the meantime …go for the extensions!!!
    Hope things work out for you ❤️

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  • By Holtfamily

    Hi Iluvlicorice,

    Thanks so much for your post. I’ve been contemplating hair extensions too, to help hide the Topamax hair loss, but worried that it could cause more breakage. Did you find that it did? And did you opt for the tape-in type?

    Thank you!

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  • By iluvlicorice

    Hi!!
    Yes I’ve tried the microbeads and tape ins. I prefer the tape ins as they aren’t as heavy.
    Currently wearing none, but will go back to the tape ins in a hot second!!
    Didn’t find they did much damage, no.
    I had the occasional one slip and pull…and if this happens, you just need to know to take it out.

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  • By nikki659

    My hair won’t stop falling out and I’ve been off Topamax for 4 months. I was taking a hundred mg for about 6 months. My hair will not stop falling out. I don’t know what to do. Has anyone experience this and how long did it take before the hair stopped falling out. I would appreciate any input anyone might have it’s bothering me really bad. I had no other side effects from this medication and I didn’t even feel any side effects from just stopping cold turkey but my hair will not stop falling out and it’s driving me crazy.

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    • By Nancy Harris Bonk Moderator

      Hi nikki659,

      I’m so sorry to hear this. I would think by now it would resolve itself seeing as you’ve been off Topamax for four months. I experience hair loss when my thyroid is out of whack and understand how awful it is. Have you had a chance to discuss this with the doctor? It may be time to have some blood work and make sure your thyroid is OK.

      Keep me posted,
      Nancy

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    • By mela14

      Years ago I was on a medication: nortriptaline and I experienced terrible hair loss. I was also on Depo Provera injections. It was coming out in clumps! I wound up cutting my hair above the shoulders so it wouldn’t be weighed down as much. I stopped hit medications but it took about 6 months for my hair to grow back!
      I understand how upsetting it can be. Give it a little more time but definately check side effects of all other medications.
      All the best
      M

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    • By meagan234

      I finally got the results back from my blood work. Everything else is normal. On saying that, I have started the process of getting off the medication just on my own. I’m Going really slow with it and I’ve been taking biotin and vitamins every day. I hope that the hair loss stops soon. I’m sorry to hear that you ( Nikki659) have not started seeing a difference. I completely understand how frustrating this Is. Not only have I lost alot of my hair, but you can noticable see it has broken and snapped off on top of my head. If you find out anything new please share! Know that your not alone.

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    • By Nancy Harris Bonk Moderator

      Hi meagan234,

      Thank you for the update. I’m sorry the blood work did not prove helpful in finding much about your hair loss.

      I wonder if it’s time to see a dermatologist about this? I believe they are the doctors who treat hair loss.

      Nancy

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  • By pinkymd

    I’ve been on topiramate for over 2 & 1/2 years now. My hair has fallen out & thinned out to the point that I can’t wear it down & I put it up & use the powder called Gray Away by Everpro You can buy in Walmart, CVS, etc which is a root touch up but works great for bald spots on Your scalp. I’ve been to two different Endocrinologists who have Me on the correct dosage of thyroid medication after constantly checking My bloodwork. I take 100 mgs of topiramate in the AM & 100 mgs in the PM. The last Endocrinologist said next visit to the Neurologist I need to speak to Him because She said it has to be the topiramate that has caused My hair to fall out. It started thank goodness after I retired so I don’t have to go many places because it is embarrassing. I can’t wear hair extensions because they give Me worse headaches than what I’m using the topiramate for. I have occipital neuralgia so I also get needle injections but not as many as before when My headaches first started. Topiramate did make Me lose weight (40 pounds) which was wonderful but the losing of My hair has been horrible.

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  • By Nancy Harris Bonk Moderator

    Hi pinkymd,

    I hear you and you’re not alone. Thank you for sharing this difficult journey with us. As I age my hair is thinning too and I can always tell when my thyroid is out of whack – I start losing hair.

    I wonder if seeing a dermatologist would be helpful? Apparently they deal with hair loss too.

    Keep us posted on how you are doing,
    Nancy

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