Topiramate - hair loss

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HI, am looking for some advice. My 15 year old daughter has been taking topiramate for about five weeks after four years of funny turns which have finally been diagnosed as migraine by a neurologist.  Yesterday she cam downstairs in tears after feeling a bald spot at the back of her head. She has incredibly thick long hair and when I looked she has a large patch of scalp showing and e hair around it very thinned.  I have told her to stop taking the topiramate, she was only taking 25mg at night. Has anyone else had experience of this. I have a very distraught teenager at home now.

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  • Posted

    OMG, I'm so happy to hear ur baby is doing much better and is ex free. Best of all, has her hair coming back!! I was prescribed the same drug for weightloss w/phentermine. I have only dropped maybe 5 additional pounds in 4 mos., but my concern is my hair. I have always had hair to share. In just 4 mos of 25mg u can clearly see my scalp. I can only wear my hair up in a bun or ponytail. I'm tempted to chop it all off. I have a wedding in May 2017 and if I stop the medication I'll gain all weight back (20 lbs) plus more. If I continue I won't have any hair left! Will my hair grow back? I'm 45 yrs old!!! Plus, I've noticed my hands are super dry and my nails look horrible and dry and cracked. WHATS HAPPENING TO ME??

    • Posted

      Hi RADHA, I started taking Topomax for migraines last September. The side effects were awful, lost 70 lbs in 4 months, became malnourished, anemic, memory problems, etc...and of course the awful hair loss! I had very thick hair before Topomax. In fact people always commented on how thick and how much hair I had, not anymore, unfortunately. Please keep in mind, this us just my personal experience, I'm sure everyone is different, I tried Biotin, bought several very expensive shampoos for hair loss, nothing helped. I saw my dermatologist. The medical term for this condition us Telogen Effluvium. Some things that may help...a silk pillowcase, no tight hair bands, an extra idea toothed comb, don't dry your hair with a towel, instead try wrapping it in one of those hair turbans that are made of super absorbant material, they actually sell them at the dollar store that'she about all of the tips I can think of right now. The good thing is that in most cases your hair will grow back, it just takes time. Good luck to you! Hang in there, I know what your going through and it certainly is very upsetting to say the least!

    • Posted

      Kellyzboyz, I'm completely blown away by your reply. I want to lose weight, but honestly for the two months I took Topamax 25mg, I didn't lose but 5 - 7 lbs. I lost more hair then i did weight. What did your dermatologist give you to take? Since my hairloss, I too am only using a comb to comb my hair, if needed. Otherwise i do not comb my hair or style it much, just for the fear of more hairloss. I am curious, if ur dermatologist prescribed you anything. I have stopped the medication and i do see some hair growth coming in, but I need all my hair back yesterday!!!

    • Posted

      I love that the second word starts with eff, because this is effed up! Hehe when I lost hair due to lack of protein it was a thinning. This has actually balding spots because it's so heavy of a thinning. Make sense? Arg...just sickening! Glad I have a few cute wigs!

    • Posted

      I currently take Topamax and am currently weaning myself off. I did not experience hair loss from this drug, but I did from another. I began taking Biotin which has worked; however, keep in mind that the vitamin takes time to begin effectively working into your system to repair your skin and hair.

      Also, it has been known to affect people's skin at high doses, so be careful in choosing the mcg level. I think it goes up to 15,000 mcg , but that's super high.....unless your body can tolerate that much Biotin. I know it can be very stressful because I was losing hair, having severe dry skin issues on top of side effects and withdrawal effects of medications. Don't lose hope.

    • Posted

      Hi RADHA2008. Did you doctor mention your thyroid based off your symptoms/side effects? I mentioned my hair loss today at the doctor and she said it could be from the topamax but then she also asked me about my skin be super dry, etc and suggested that we check my thyroid as they can also be symptoms of issues there. I have been on topamax for weight loss for about eight months with no side effects except for the last few months my hair has been falling out and my skin has been terribly dry. Had the blood work today to test my thyroid.
  • Posted

    I've been off for a month and the hair loss hasn't slowed yet. I started putting castor oil on my scalp and using a biotin infused shampoo. I worry mine is partially malnutrition. Lack of protein and maybe low iron. I also used a lot of dry shampoo which ive read will or can cause hair loss. PLUS I'm post menopausal and started hormone therapy at the same time! It's a toss up! I'm distraught! I'm looking at wigs. I'm heart sick because I lost a bunch of hair 3+ years ago because of weight loss surgery and it took me forever to grow it back after cutting it short. I wore it in a ponytail with added hair for almost 3 years as it grew out. Finally got to shoulder length and now it's all falling out again!!!!

    • Posted

      I'm so sorry to read that Dede, what about steroid injections? I've heard so many negative things about Topamax, I really can't believe it's still out on the market. The only good thing Topamax did for me was actually control my migraines. I wasn't even taking i thought for migraines only weightloss. I have been pulling my hair up into a ponytail as well bec it's too limp to wear down up front.

    • Posted

      I have mixed emotions. I lost a ton of weight, I couldn't lose the last 50lbs I needed to lose. I'd lost 120 and was a lot thinner than I'd ever been, but... also, you have to be on 200 mg or more to really lose.

    • Posted

      I'm sorry, dede. I hope it stops falling out soon. My theory is that since I stopped sweating, my hair pores were plugged up and didn't allow my hair to grow. Of course that is just my theory. I also wondered if malnutrition was part to blame also. I would eat, but still kept losing weight. It's almost like Topamax doesn't let the vitamins and nutrients "stick". I wish I had never heard of that drug. Way too toxic!

  • Posted

    Hi my name is Joanna. Iv recently was pit on Topamax myself for my migraines...iv been taking this medicine for alost a year now. I had taken myself off of it during game this time because I couldn't find out what was making me feel like I was unorganized and very forgetful and all sorts of different feelings I was going through. Then I started noticing my hair. When I would brush it I'd havt to empty the hair brush 3/4 ( I'm not joking) I'm sick to my stomach about all of this. It's falling out by the handfulls. Iv got long thick hair and yes it would come out but nothing like it is now. My grandmother has even noticed my hair was thining....I don't know what to do. I need this for my migraines but I also want my hair. Have you learned nething that could help. I'm going to start doing some research about other things and get on a good vitamin. Hope this helps...I'm so sorry this has happened to her at this young of an age. Have you heard of neone else going throught this... If you'd like we could keep each other posted...

    GOOD LUCK !!!

    • Posted

      Hi Jo. I am Sagar and I am 26 yrs old. I was prescribed Topiramate for a long time. I've been experiencing hair thinning and hair loss for a while now. I complained to my psychiatrist and he asked me to stop taking the pill. He has asked me to take Biotin and multi vitamin tabs and apply Minoxidil topical solution. Have you stopped taking Topamax? If so, did u regain any of your lost hair ?

  • Posted

    I just wanted to share what worked for me. After three months on 200 mg/day of Topamax, I was filling a sandwich size ziploc bag of hair. Then I started to take: Vitamin D (5000 U), Biotin (10,000 mcg), Selenium (200 mcg), Zinc 50 (mg), Primorose oil and Centrum Silver. After six weeks the loss was over. Completely. Not one single hair would come off of from my hair. However it was NOT a gradual process. Until de very last week, the loss was still chaotic. It wasnt looking any better. Then, all of the sudden it stopped. Unfortunately, I cannot say which supplement did the deal. Also, I quit taking them at the time and kept only the Centrum. Two months ago I had to quit the Centrum too due to stomach issues. Now my hair is falling again, but I can't say if it's related to Topamax or if it's stress related. I had some blood work done and my vitamine D, B12, B6, Iron, Thyroid, are normal. I had bariatric surgery many years ago and I have issues absorbing all kinds of nutrients, so I'm supposed to take a multivitam daily. At the beggining I thought the hair loss was associated to this issue but after reading so many testimonies of people with the same problem, I realized it wasnt related to it.

    I'm sorry I couldnt be more specific about what solved my problem, but I hope it can shed some light into someone's problem.

  • Posted

    I have been taking 150 mg per day for 8 years and it has "saved" my life. Without it, I had several migraines a week and a constant lingering headache. I had some side effects for a couple of months when I started taking it. Mainly tingling, thirsty and trouble finding the right word to say but those dissipated. It has been a life saver for me for sure. 

  • Posted

    Hi I am 26 yr old. Have been suffering some hair thinning and a bit of hair loss after taking Topiramate for a while. Will stopping it and application of minoxidil topical solution and taking Biotin tablets help regain the hair I've lost.

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