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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 Nancy Harris Bonk Moderator

      Hi Maddy,

      Thank you for sharing that interesting information with us! I’m going to do some reading on vitamin B!!
      Nancy

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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 Nancy Harris Bonk Moderator

    Hi mela14,

    Great points – thank you for sharing them with us.

    It’s always good to know we’re not alone.

    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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  • By MrsMiMoo

    I just posted separately sorry. I have lost half my hair and I don’t know what to do. Topamax 150mg a day. Taking biotin and multi vits – it’s improved a bit but is not growing back. Not sure what to do.

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    • By Nancy Harris Bonk Moderator

      Hi MrsMiMoo,

      I’m so sorry to hear that. I know how traumatic it is to experience hair lose.
      I would encourage you to discuss this with your doctor. If you don’t get any answers or help, maybe it’s time to find a new doctor….

      Please let me know how you are doing,
      Nancy

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    • By meagan234

      I had to finally stop taking topamax… I was loosing all of my hair. It took a couple of months for it to fully get out of my system and now my hair is finally not constantly falling out and snapping. I started using 5000 mg biotin daily, a flintstone vitamin daily( might sound weird for adults but if you look it can have more of the good stuff then adult vitamins) , and I use shampoo that has biotin in it and is paraben free so it is better for your hair. These are just some of the things I’ve been doing to help the lose, I hope it helps you too.

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    • By Nancy Harris Bonk Moderator

      Hi meagan234,

      Great tips!! Thank you for sharing them with us.

      Nancy

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    • By sblood415

      Hello everyone,

      I’ve had migraines since I was 12years old. I’ve tried almost every medication. I started taking topamax back in 2011 to 2015 at 400mg a day. Back then the only side effect I experienced was weight loss, which I didn’t mind. I started experiencing a lot of cluster migraines, and I felt topamax was doing more harm then good. So I stopped taking it. I managed my migraines with extra strength Excedrin and Motrin.

      My migraines got so bad. In 2017 I was hospitalized several times because my migraines were so bad. After a lot of doctor visits, I finally decided to start taking topamax again at the end of 2017. I started at 50mg a day, gradually went up to 100mg a day.

      I started noticing my hair falling out at the beginning of this year. I started taking a one a day multi vitiam. It wouldn’t stop and seemed to get worse. So I stopped taking topamax March 30, 2019. My hair is still falling out, I want to think it’s getting better. But everyday my hair still falls out more than normal. I’m not sure what else to do. I fill like I’m going to be bald before it gets better.

      Someone please help!

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  • By CrystalB

    Hi there,

    I have been on toprimate for years (like 5.5 years I think). I had a feeling it was making my hair fall out so I wanted to try a different medication and also see if this would help with my migraines. I am pretty sick and there is a lot going than just migraines. I take 100mg twice a day so its a lot.

    It was a mistake to go off of it because I was in so much pain and my migraines got so bad, but my hair grew back for sure. Since then my hair struggles so bad and I had hide under hats and beanies whenever I got out. I hate it…actually was just crying it about it earlier today. I take supplements, tried Biotin and it did not help, took Coconut oil in pill form didn’t seem to do much..eat well and none of it works. I even tried Rogaine which might have worked but everything gets expensive.

    My practitioner tried to say it could not be the medication, but meds effect every body differently.

    I hate it, I hate it but which is more important…how vain am I really? but dang it I’m a girl! the hairless is my crown and all my hair wants to grow forward, it is weird. I keep long so I can put if up to cover it also. I tried super short and blonde but it didn’t really work. Ugh…it sucks but the meds help me function more than not.

    and yes it helps with weight loss.

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  • By Nancy Harris Bonk Moderator

    Hi CrystalB,

    I hear you! Hair loss is SO frustrating. Like you, I take Biotin to help with it.

    I wonder if going to a dermatologist would be helpful? Maybe he/she would have better answers?

    Let me know what you think,
    Nancy

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  • By Linda Lacy

    Hi
    During my reinstatement( 2nd time use ) of Topamax I experienced sudden extreme hair loss and breakage, especially my crown of head and right side. I immediately stopped taking this drug!
    Linda F

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  • By Nancy Harris Bonk Moderator

    Hi Linda Lacy,

    Hair loss is very frustrating. I’m sorry you experienced that. Has it improved since being off Topamax?

    Nancy

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  • By dawnybear

    I’ve been on Topamax for probably over 7 yrs now.And have suffered with migraine since I was in my 20’s, now 51. It hasn’t caused my hair loss. But the new Aimovig shot has. But it has also made my migraines go away. But I don’t want to go bald. This is my second bout of hair loss, I can’t take it. I’m going off the Shot and starting Minoxidil for women…It’s become that bad. My dermatologist said it’s okay. Has all my blood work done and everything else is fine. Many other women have had the same issue with this new Aimovig Medication too. Sad.

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  • By Nancy Harris Bonk Moderator

    Hi dawnybear,

    I sure hope the Minoxidil works. As I mentioned above, it may be worthwhile to have your thyroid checked. Hair loss can be a symptom of an under active thyroid.

    It’s true I have heard from others who are taking Aimovig that they too are experiencing hair loss, but not so much with the other two CGRP medications, Ajovy and Emality. Trying one of these may be worthwhile.

    Wishing you a low pain day,
    Nancy

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    • By dawnybear

      Hi Nancy,

      I did have my Thyroid checked, and everything was fine. I just contacted my neurologist and asked her what the next best CGRP med would be and she said Emality. So I asked her to give me her profession opinion on which would suit me best as far as the hair loss is concerned, knowing that everyone is different?!. Wish me luck and all our us out here less pain.
      Hugs,
      Dawn

      reply
  • By Nancy Harris Bonk Moderator

    Hi Dawn,

    All the luck possible heading your way!!

    I’ll look for an update!
    Nancy

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  • By Nancy Harris Bonk Moderator

    Hi sblood415,

    Thank you for sharing your story with us and being part of the Migraine.com discussion forum – we’re glad you found us!!

    I’m so sorry to hear about your hospitalizations, that must be frustrating. I hope they were able to break the migraine attack.

    It’s not uncommon to hear about hair loss while taking Topamax and many see improvement when they come of it. Seeing as you are still concerned about it, I would encourage you to have a conversation with your doctor and see what he/she can do to help you resolve it. There are a number of other health issues that can contribute to hair loss. Thyroid issues can contribute to hair loss. I take daily medication to combat an under-active thyroid. I also take Biotin to help as well, but please speak with you doctor before you take any new supplements, even over-the-counter.

    Topamax is not the only medication out there to prevent migraine attacks, there are over 100 in fact!! The thing is when we have four or more severe migraine attacks a month, it’s time to discuss migraine attack prevention with the doctor. Let me share with you all the medications and supplements that can be used to treat migraine disease; https://migraine.com/blog/migraine-preventives-start/.

    I hope this helps! I look forward to hearing more from you!

    Nancy

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  • By pinkymd

    I use topamax for occipital neuralgia/100 mgs in the AM & 100 mgs in the PM/My thyroid was also out of whack & I was on too high of mgs of levothyroxine as well/so I haven’t a clue as to blame My hair thinning on the thyroid that was causing it or the topamax/I was never informed until now that topamax could have been a cause of My hair thinning/The severe temple/eyeball/Rice Krispie popping sounds in My brain & left ear pain that I was experiencing before topamax is well worth My hair thinning!

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