February 20 2006, 1:29 pm PT | Posted in: Drugs (Cause Hair Loss) + Female Hair Loss
I have been taking Topamax sprinkle capsules for my migraines for almost a year (onyl 45 mg per day). After the first few months on the drug, I noticed more hair on the floor in my bathroom and that it was falling out when I ran my fingers through it. In November of this year, I switched my birth control pills to Low Ogestrel,a low dosage monophasic pill so as to keep my hormone levels more stable and keep headaches at bay. After doing this, I noticed an increase in my hair loss. Now, in the shower, there is hair everywhere. Hair on my pillow, and hair on my clothes. I’ve noticed that my hair looks thin at my widows peak and on the sides of my head. It’s frightening. I got off the Topamax two weeks ago and the hair loss has continued. I am going off the birth control this month to see if that stops it.
Just wondering if you’ve ever heard of these drugs causing hair loss? Perhaps the combo of the two has wreaked havoc on my body for some reason? My doctors keep saying “It’s possible, but uncommon.” I’ve had all my bloodwork done and every checked out ok.. I just want this to stop. If it is the pills, how long before it will stop?
Thanks for any help!
Hair loss is associated with each and every one of the medications you use. I am sorry to report this to you, but these things have a cost in side effects and finding the balance can be difficult. Some people may be more sensitive than others. It may take months to see any regrowth after stopping or switching the medications. When medications are used in combination, it makes identifying the problem medication(s) more difficult.
Paid advertisements (not an endorsement):
Having the same problems with hair loss, I was taking topamax for almost a year and low dose BC, started noticing more and more hair loss, still falling out after stopping, have been off the topamax for one month and nothing has changed, of course I’m worried about it, Dermatologist says it will grow back but will take some time, when will it stop?
I was on topomax for almost two months.I also noticed hair thinning…hair texture turning to brillo..and tingling of my scalp.I have been off med now for 6 weeks.I am taking vitamins..but the loss of hair and tingling and texture are just getting worse.I am very scared.I can see the strands falling out of my scalp.I had blood work done and it was all normal. Anyone see the hairloss stop after ending med.
I am ALSO experiencing the same frightening side affects mentioned above. I was put on 25mg Topomax to treat my migraines, as well as a birth control called Kariva. (Kariva resulted in bleeding for 3 of the 4 weeks each month, so I didn’t stay on that long.) After no improvement in migraines, my Manhattan Neurologist told me to up the Topomax … she said I could go up to 5 pills a day (but this should be done progressively). So I slowly moved into 2 pills a day and that resulted in the tingling sensation in my feet and hands (daily), and slight “verbal confusion”, (I couldn’t always come up with a SIMPLE word that I had in mind to complete a sentence … VERY embarrasing.) Meanwhile I went on a different BC pill — Loestrin FE 24. (now I menstrate on the 2nd week instead of the last 4 days of placebo … doesn’t seem to work like it is set out to.) Loestrin didn’t make a dent in the migraines … so at one last ditch effort I thought I’d try 3 pills of Topomax (75mg)a day to see if the migraines would be reduced. Not only did they not decrease, but all of a sudden my hair started falling out — ALL over my pillow every night, clumping in my brush when I’d brush my hair, and I had a painfully sensitive scalp. This has been a horrifying experience. I’m only 35 and I’m losing so much hair. My hair is noticeably thinner - especially in the front and on top of my scalp. (Also, I have not colored my hair in over a year … so this cannot be attributed to a bad color job.) The scalp sensitivity became so bad that I was afraid to comb my hair because I didn’t know if chuncks would start coming out.
My Dermatologist took a biopsy of my scalp and everything came back normal. (go figure.) But ironically the PDR guide shows Topomax has a 4% incidence of hair loss. I have a feeling that it is higher than that.
I went off the Topomax cold turkey 3 weeks ago and have started to see a decrease in the INTENSE scalp pain/irritation, but continue to see thinning hair and it falls out when I brush. I am just hoping that my hair will start to regrow soon!
I would love to hear if the folks above have seen regrowth since going off of Topomax.
I am on topamax 200 mg daily for migraines. I thought I was having mild hairloss but wasn’t sure. Started Loestrin FE and took it for only two months and now have a very noticable bald spot and serious hair thinning. I have no idea if it will grow back or if I should stop topamax and try something else. I found two websites that say that topamax should NOT be used with certain birth control pills, including Loetrin FE because it messes up hormones. I’m really angry that my OBGYN didn’t seem to know this. I gave her a list of my meds, and specifically asked about this. You know how it goes… these docs always act like we’re paranoid. And now I’m bald.
I was on Topamax to treat migraine for over a year, dosage was slowly increased. At the same time I was extremely anemic, so attributed the hair loss to anemia. My scalp became very red and sensitive, and my hair was falling out in clumps. I went to my dr. he wasn’t aware of topamax causing hairloss, until he checked online. I was weaned off the topamax, but my hair is still very thin on the top and sides. Will it ever grow back?
I have been on Topamax for about 10 months (100mg). I have the same symptoms as everyone else that has posted on this website and every other website. My hair has been falling out in huge amounts for probably about 6-8 months. I have been to the doctor, had bloodwork done which all came back negative. I asked him if it could be the Topamax and he said no.I lost 60 pounds in the first 6 months of taking the medication and like every one else was so excited to see it happening. I also like many people did before starting Topamax HAD very thick hair. It is very frightning to see your hair fall out in huge amounts like this. I read what one lady posted above…she was a happy fat person… I sometimes feel the same way. This side effect definatly outweighs any good to come of this medication. If you are thinking about taking Topamax or considering stopping the medication…I strongly urge you to keep reading….what is on this website and every other website about Topamax and hair loss.
I was taking Topamax for only 5 weeks when I first started noticing hair loss. Then my hairdresser became concerned & asked if I was on any new medicine. I called the Neurologist to only have him say I should stop taking the Topamax. He was not concerned about me or my health, much less my hairloss! I was married a week later. Thank God I still had hair.
I have stoped taking the med. but my hair still keeps falling out!!
I do have my hair dyed is this making the loss of hair worse? Are there vitamins to take? Why does the Dr. & Pharmasist say only 1% of the people are affected by hair lose. Sure sounds misleading to me!
I also had extreme hair loss with Topamax. I have stopped the med. Three weeks now and it has not stopped falling out as well….I am a hair colorist and I can assure all of you that coloring your hair does not make it fall out worse!! Please keep coloring your hair. It will make you feel better. I also contacted the company who makes Topamax and they said that at first hair loss wasn’t reported from people so it wasn’t listed as a possible side effect. Now she said more than 10% of people are calling about it. The only thing we can do is report it so others on Topamax can be more aware than we were. And also it could take a while for the hair to grow back..
I was on Topamax from mid-May until December 14th. My hair started falling out like crazy. It is now very thin and even my husband noticed he could see my scalp. I stopped the Topamax when I went on line and found all the postings. I started using Rogaine for women and am taking mass doses of fish oil, B vitamins, Biotin, etc. Hair takes so long to grow back - all I’m hoping is that it will stop falling out!
I went on Topamax in June to treat migraines. At the time I was about 125 1bs. Topamax wasn’t working for me, the dose was increased to 150mg. I suffered from very intense verbal confusion, mood swings, and weight loss. One Tues in Oct I weighed 109, by Saturday I was 104. I was really getting scared. I stopped taking birth control pills to help decrease migraines. After weaning off of the Topamax, it was 3 months later when I started losing a ton of hair as described by others. I have been losing hair for a month now (I’m 4 months off of Topamax). I too had all of my bloodwork done. I’m wondering when the hair loss will cease. I’m not sure who has that answer for us…
I was also on Topamax for Migraine prevention x4months. After the first two months my Neuro upped the dose to 150mg, it was this dose that destroyed my hair! I used to have shiny, medium thick hair, it was very manageble. I went off the Topamax Aug 2007, my hair loss continued for a good 3 months! It starting slowing around the end of November. I’m so devastated with what my hair looks like now, it is so thin, my 19month daughter has more of a ponytail then I do, my hair towards the bottom is no bigger than the circumferance of my index finger, it so brittle and it continues to break off everywhere, on each side of my forehead there are two chucks of hair only about 1″ long where the hair just broke off, they haven’t grown a cm yet, it just doesn’t seem to grow much at all. I’m so consumed by this every day…I cry a lot.
I’ve been to a Dermo. she said there’s nothing I can do but take some Biotin to help support hair growth, I have and also been using Nioxin products for three months, I haven’t seen any difference yet. I’m embarrased because I feel like it just is so obvious I have a sick head of hair. I only wear dark colored shirts to try and hide the see through hair in the back. It’ll be a bummer to go thru the summer with the mess. I wish I had some words of hope for all of you, I feel bad for you all, you’re not alone. I’m furious this side effect was not disclosed as “Common”, as it definitly is a severe and devastating one. We were not informed, and our right to make an informed decision was withheld. I suffer with chronic Migraine, now I’m anxious, stressed and have a low self image. Thanks Ortho-McNeil you’ve sure improved my quality of life!! Good Luck
I was on Topamax for over a year & a half. At first I had only the side effects of weight loss & tingling. At about 14 months into it I started noticing the hair loss. It is bad enough now that my husband notices. (On my pillow, clothes, bathroom floor & the shower is the worst!). The texture is totally awful now. It just feels dead & weak! I don’t know what to do to get my hair back. Any suggestions would be appreciated! I lost probably 25-30 lbs., but its not worth how bad my ahir looks!! HELP PLEASE! Oh, & I went off the Topamax hoping my hair would change but nothing yet.
Hi everyone–you are not alone. I was on topamax for 4 months & it has nearly ruined my life.If the eye twitching & confused mental state weren’t enough now iam dealing with major hair loss! My hair was long & thick now it is stringy & feels like straw. It snaps off so easy & is all over our house. Iam blonde and refuse to wear a dark color because it shows hair everywhere! Its been falling out since October & doesnt seem to be slowing down–i think iam headed for a wig!
Andrea andreaj68@aol.com
I would urge everyone here on this site or anywhere to call 1-800-526-7736 to Ortho-Mcneil (the manufacturers of this medication)and put in a complaint about this devestating hair loss! I did already twice, and I’ll be calling again soon to get some answers as to whether or not my hair is ever going to grow again or if this toxin has forever destroyed it. The more complaints they receive regarding this side effect the more pressured they’ll be to change it.
Thanks Amy, for the phone number. I will be calling Ortho-McNeil as well. I’ve been on 150mg Topamax for almost a year for migraines. My hair has become brittle and dry during this time with an increase in hair loss. But the past 5 weeks, hair has been coming out in clumps. I’m getting tired of picking hair off my clothes and arms, as I fight back the tears. I learned it wasn’t a side effect at all but when I checked the website, it is listed as a minor side effect. Seems to me that this is a BIG ONE that got swept over? Especially when I read posts out on the web of ladies with bald spots! What is their liability in this?
Does anyone even know when they added hair loss to their list?
BTW, please tell your doctor about your hair loss. But don’t stop there. He/she won’t act on your behalf. I agree with the last post that we should all be calling the mfr to complain!
I have been on topamax for 5 months, and my hair won’t stop falling out! it’s not just hair falling out it is an entire change of texture in my hair. my hair is limp,brittle, and more straight, where it used to be curly and very very thick. i notice it most on the sides of my hairline, but i still loose tons of hair all over my head. i was in denial for the past 2 or 3 months because i have so much hair, and because my doctor told me that this was ‘very uncommon’ he made me feel like i was paranoid or making things up. all these posts make me realize its not impossible that the topamax could be doing this.
I went on topamax the first time in March 06 (100mg), then noticed in late June 06 that my hair was falling out (about 3 months). Then from July 06 til Oct 06, my hair kept falling out. In beginning Aug 06 I did taper off the medicine & told my neuro dr and also went to a derm dr (of course in which my blood work came out negative so it was pretty much the topamax that made my hair fall out) I did have long thick hair and it really thinned out by Oct. and also was taking biotin and zinc. (gradually stopped Oct to Nov 06).
It was quite depressing, but my hair eventually all grew back to normal throughout 2007 (i think it may helped that i was pregnant from March 07 til Nov 07 takin prenatal pills). However, while i was pregnant my migraines never went away and by Aug 07 (my 6th month) I had a really bad episode driving (blurry vision, etc..) and my ob gyn put me back on the topamax. I didn’t tell them about the hair loss from the previous year because I thought that maybe for the 2nd time taking it, the hair loss wouldn’t happen again. So from Aug 07 to March 08 at 50mg, things were okay but then my hair started to fall out again and I just stopped it completely the beginning of March. Now again my hair is thinned out and losing like clumps of hair everyday for the past 1 1/2 months. No patches but just thinning out everywhere. I know that my hair will grow back but man I dont want these migraines (9-10 or so per month, not including headaches). Also, i’m currently breastfeeding so there’s nothing really I can take for them, other than fiorcet (which does help *caffeine, tylenol, tranquilizer). Im sad and just waiting for the hair falling to stop, but oh well =/
And for inquiring minds, my little baby girl (5 months now) is healthy and nothing is wrong her, even though i took topamax while pregnant =)
I hope this information helps anyone else who is having this problem. Topamax worked great for me…i did get ALL of the side effects but eventually they went away and never bothered me other than the hair loss.
to the previous entry (#17), if anyone has questions, i’ll be happy to answer them…my email is grepo1078@aol.com
does the hair loss ever slow down or stop? mine is just thinning now… i really love what the topamax is doing for my binge eating and my mood swings. its weird because it almost becomes scary to me to get off of it even though it has caused me so much stress. i almost feel like i am dependent on it in some form. the only side effect that has bothered me is the hair loss (call me vain). it really just is a matter of how much i will let fall out before i stop taking it. i am also taking lamictal and i wonder if that could be causing the hair loss? is anyone else taking lamictal?
To the last post, just wanted to let you know that is seems even when you stop the Topamax the hair falls out for up to 3-4 months after. My tremendous hair loss happened 4 months after stopping the med. Since November 06′ my hair has not passed my collar bones, it used to be 4″ past my shoulders. The hair breaks off so much. Even if I see 1/2 of growth at the root each month it still never gets longer!! Which is very wierd and so frustrating. Anyway just a little heads up…be prepared, the hair doesn’t seem to just stop when the med is stopped. My Dermatologist said the damage to the hair had already occured when taking Topamax. I’m still waiting for my reversal in hair growth…I’m not sure is coming!!
I was taking Topamax 50mg/day for migraines from July 07 untill May 08. I had such thick hair it was sometimes a annoying.From the start I had the tingling in finger tips and toes and foggy mind also no energy! But not one migraine, I thought it was amazing. First of may I got out of shower, with towel dried hair, gently brushing I had clumps of hair coming out. I was so scared. Next shower had alot come out and this time I used a hair pick and held onto my scalp but still clumps. OMG! I did alot of reading from different forums about topamax and this hair loss. I knew it had to be it. By the way I work for a Dermatologist and he did blood work concentrating on Iron but all was normal. I talked with my doc who had my taking it and he told me to wean off of it and he would try a Betablocker for a preventive. When I went to 25mg the next day a migraine came on (if your taking for this please be careful when you stop taking it). That was 5 wks ago and I think I am having less hair loss but it is still falling out and do not see or feel any new growth yet. My husband said it looks like less hair in the sink now. My hair is so thin now, it is very stressfull. My derm. told me to be patient it will grow back. But I don’t think anyone really knows forsure what this medicine really does to the hair follical. Would love to hear if anyones has started really growing back yet.
i am a black, African American, one of quite few with long hair about to my mid back, maybe 5 inches from my butt. i started topamax for migraines and within a month my hair started to far out where you could see the bulb at the end of the hir follicle. which assured me that it was falling out from my scalp and not just breaking off, which has never happened to me..i stopped taking topamax imediately with the hopes that maybe after topamax getting out of my system that my hair would stop falling out. but 2 months later i don’t know if it’s gotten better or worst. i started investigating hair growth.. and have learned that those pores where the bulb grows are probably dead or nongrowing anymore so you will continue to see hairloss but that also means that the new bulb probably pushed it out this does not make us feel better because now the question is how many bulbs are dead..i will be calling the manufacterer also because if it was a listed side effect..i don’t think i would have taken topamax..i too believe that it was not worth it and it should have been a choice for me to make..you can also change your diet for migraines. once i did that or if you find those triggers and elminate them, like mine was soda..i now rarely have them..and the topamax did not garantee migraine relief
thanks tricia
I have been taking Topamax 50mg twice a day for about a year now and used to have really thick hair. I have noticed over the year my hair falling out quite a bit in my brush and in the shower and all over the bathroom floor. Recently, I have been alarmed at how thin my ponytail has become and at how brittle my hair is. It is so depressing!! The Topamax works very well for my headaches but I hadn’t noticed hair loss listed as one of the side effects when I started taking the med. I decided to go on-line and see if anyone else has had this problem and I must say I am alarmed at all the entries!
The most alarming thing here seems to be that when the med is stopped, no one is noticing their hair growing back! Also for a lot of these people they are having to make a choice between hair loss and feeling good and that really sucks!! I think the drug company should be the one to answer these questions and should take some responsibility in this matter!!
i have been on topamax for 7 months now. prior to taking Topamax i was already concerned about my hair thinning and obviously migraines which i thought were due to the birth control pill i was taking. i stopped the pill and started the topamax. no migraines but defnite hair thinning.So incredibly stressful that now I’m having panic attacks over it that the Dr. wants me to take Wellbutrin along with this. ANOTHER drug that causes hair loss, are you kidding me???? I am stopping topamax cold turkey today after reading this. PLEASE tell me someone out there that your hair has grown back after going off this drug…I am now refusing the Wellbutrin and maybe only going to take xanax for infrequent panic attacks. I find that if I do get a headache maxalt works best anyway at the onset. If I had had any idea this could happen, even with the lovely weight loss I would have said no way.I have seen general thinning, not clumping but now I’m really freaked out by these stories…..will it grow back? has anyone seen any improvement after stopping this drug?
I took 25 mg of Topomax for one week. I had abdominal pain, very dry eyes, and hair loss. While the hair loss was not huge, I am concerned because it came out by the root. This is concerning because I am worried that there are more that will come out too.
Patricia, I, too am African American with very long hair, less than one inch above my behind, below the waist. Long hair doesn’t grow to this length overnight, so even if the hair starts to grow back, it will take a while to reach the length of the rest of the hair. I pray that permanent damage hasn’t been done. My neurologist told me that the worst side effects were tingling of the lips, hands, and feet. Had I not stumbled upon this, I would not have known that this was a possibility. I’m very scared about what I will find on my pillow, in my hair brush, and ultimately in the mirror. I’m hoping that one week (4 days) hasn’t done too much damage.
Patricia–what’s the latest on your end?
Well, I was on Topamax over a year ago. I lost 30 pounds and half my hair. I was freaking out. I ordered Rogaine, but that only increased the amount I was losing everyday. My pony tail went from full to super thin. When a friend of mine who was in med school looked the drug up in a drug book she found it has been linked to hair loss. My Dr. did not know about this side effect. He advised me that if I felt it was severe enough I should consider stopping it.
So here I am almost two years later my hair is great and full and shiney, but my migraines are out of control again. The Topamax helped with my migraines and that is why I am considering going back on it. Has anyone found a wa around the hairloss maybe with supplements or vitamines?
I will say to all of you wondering your hair will grow back. It took almost 3 months for me to start seeing it and my hair dresser told me he could see the areas with new growth. It just takes time to fully recover.
I have been on Topamax now for almost a year and have seen a rapid increase in hair loss within the last 4 months. My hair has always been thick and curly, now it is thin fuzzy and lifeless. I stopped coloring my hair thinking this may aid in the growing out processes. I just made the link to my hair loss with Topamax today, I am very upset with the drug companies for this seems to be a major side effect, after reading MULTIPLE blogs on this topic, but yet it is no where listed on the side effects of Topamax.
I plan to call my doctor tomorrow morning to find another medicine to keep my migraines at bay, if anyone has any suggestions I would love to hear them.
In regards to hair growth, I was able to maintain my hair thickeness a little better, for I do not lose chunks, and when I use this product it appears to feel more lively and full. It is called Neem Hair Lotion by Dr. Hauschka. You can purchase this online or at Whole Foods.
Good luck everyone with the hair growth! I plan to do somemore research to find more techniques to aid in the growth of my hair, if I find something that works, I will write again.
Julie - did you use anything special to help your hair grow back? I am in need to get my hair health again! My hair was one of my greatest attributes.
Lauren- I understand the stress of hair loss associated with Topamax as I am going through it as well, but I do want to point out that hair loss is listed as a possible side effect. If you look at possible side effect list, it is listed under “alopecia” see: http://www.topamax.com/topamax/assets/topamax.pdf . It does also mention that Topamax can cause abnormal hair texture. Unfortunately, doctors don’t often tell you about these side effect when they prescribe it.
Thanks for the tips you provided in your post.
To everyone who has listed any comments about the hair loss and Topamax. I was prescribed this a couple of years ago and once I was prescribed this as a remedy for unknown seizures and migraines I did my research as always because the doc was experimenting to figure out what would help and I found out a lot of things about this-like certain possible damage to your body and also affected your birth control, including hair loss. I immediately asked for something else. My new neurologist prescribed Nortriptyline HCL 10 mcg cap-one in the evening before bed and I take Fioricet prn when I am at work and have a migraine and Tylenol won’t cut it for me. This regimen is working out pretty well for me. But always check to see if you are a candidate for this treatment. Hope you all find what will be right for you-living with migraines can control your life, remember you can control your migraines-so far I am.