Topamax and hair loss

By shrinkgirl Sunday, July 08, 2007

- A
- A
- A

I increased my dose to 300 mg about 3 months ago, and in the past month, it seems like my hair has been thinning out a little. This isn't even listed as a side effect, but I remembered seeing a couple people post here about losing their hair, so I wondered if maybe if people who have had this side effect might respond. I'm not losing dramatic amounts, but it seems like more is coming out when I brush or style it, and it just feels a little thinner. It could also be my imagination, since I'm rather vain about my hair

I'd like to hear from others who had this side effect - did it fall out noticeably, or gradually over time? Was it a significant hair loss?

Comments (53) | Add comment

Teri Robert, Health Guide

7/ 8/07 5:36pm

Yes, hair loss IS listed as a potential side effect. It's called alopecia.

shrinkgirl

7/ 8/07 8:20pm

Yup, I found it, kinda buried in there. I searched around on the internet and found a fair number of distressed people with thinning hair out there. Bummer. I'm also reading that many people's docs have recommended zinc, selenium, and biotin supplements. I guess I can give that a shot, as long as my neuro has no objections.

Anonymous

9/30/07 9:57am

Oh my God. I thought it was just me. I looked up Topomax and hair loss as a last resort because I'm on other medications, and in the midst of menopause. However, this is not just thinning. I've been on Topomax for four years and the hair loss is terrifying! I asked my primary care physician and my psychiatrist and they both dismissed me, as this being irrelevant. I'm going to DEMAND, another drug regardless now that I know there is a connection.

Anonymous

10/ 2/07 9:49pm

I'm sorry you are going through this as well. Please read what I just posted as I have had many horrible side effects from this drug. If our doctors would only listen to us it would be helpful. I wish we could join forces and do something about the makers of Topamax, but they list every single possible side effect just so they can't be sued!!

Best of luck to you!!

irie

5/25/09 7:49pm

hello fellow hairloss sufferers

i am 45 and been on topamax for seizures since almost 4 years.actuallybefore this,i was taking a great medication for them -mysoline-the generic neme is primidone and its a older medication and really works very well.been using it since i was 11and only have maybe 1 seizure every 3-4 years.---but i have chronic migraines and so my nurologist prescribed topamax to "take care of the migraines and the seizures"at one time.as soon as i filtered the primidone out of my body half way-i take 550 mg-i had a seizure.meanwhile,i noticed that i had extensive hairloss-but no relieve from my migraines.the dr increased my topamaz to 100 mg per day with no effect.the only thing i noticed -and i am already slim at 116 lbs,that my weight dropped to 112 and i had no hunger feelings at all.i went back on my primidone nd took 500 mg ,but continued the 100 mg topamax,since i did not make the connection of the hairloss and the topamax.-also before starting ,i had asked the doc what are the side effects and was told 'only possible glaucoma, possible ,but rare kidney problems and weight/appetite loss.-he never mentioned hairloss!!!!!!!!i would have never taken a pill that makes me go bald.!!now after 3 1/2 year and loosing more than half my hair and being permanently depressed about female baldness-i find out its TOPAMAX!!!-my hair never was thick,but i had lots and it had ,just before it started to fall out been down to my mid back in a long blond mass of soft, full ,siky,feminine splendor.i used to feel sexy and do modeling-now i own hair clip ons ,fake pony tails-since i had to cut my thin hair to above sholder to give it some fullness.-i am so depressed and angry and even wonder if the doctor can be sued .??i had stopped seing him since i went back on my own on primidone.

now reading about all you fellow ladies out there suffering like me i feel a bit better that im not alone,but is there hope that my hair will atleast grow back some.?

i have even started meopause,and used to think this is a side effect of that.

how long to safely filter 100 mg out of my body?

i feel like starting today and taking 25 mg less for the next month ,then 25 less again .i am living now in the bahamas ,and dont get to see my primary care doctor more than 3 times per year.so gonna do this on my own.

irie

babycham

8/ 1/09 9:58pm

Hey there. I`ve been taking neurontonin for both seizures & neuropathic pain from a brain tumor for 7 yrs & never had a problem with hair loss apart from my brain tumor. Have you asked your dr to consider switching you to that instead. I was told that both meds are supposed to work equally well. I only switched to topamax because I am tired of taking meds 3xs a day & when I was told I would only need 2 take that 2x a day I switched.

I have noticed hair loss from the topamax as well. It started to get embarrassing when people were constantly brushing off my hair which has fallen out. Fortnately I was living with someone (a roommate) who was very near sighted & didn`t seem to notice it. Actually he didn`t seem to notice much of anything. I went & purchased a wig & asked if my hair looked different. He asked if I dyed my hair....I would have pulled my hair out at that moment but didn`t want to loose anymore. My wig was 14: longer & he didn`t notice...men, LOL

It may be worth speaking to your dr about it. Good luck & be blessed!

distressed

10/26/09 11:08pm

I am on Topomax for Seizures and have been for 7 years, and just noticed that my hair has thinned out. I am devastated and I am 39 years old, and keep my hair short. Recently i just started getting this real bad pain in the center of my head (scalp soreness), and it's really painful. I noticed today a mass on the right side of my head, and i'm hoping it's nothing. The scalp is soft, and painful. My hair isnt falling out, it's just thinning!!!! I'm so hurt that other women are going through this, but happy that we have narrowed it down to Topomax!!! My neurologist is seeing me tomorrow as an emergency appointment to see what this mass is, and to see why the center of the scalp is so painful and soft. Please pray for me as i will for you and other's!!! Hopefully they will come out with another medication for seizure's/migraine's!!!!!

Anonymous

1/22/10 1:39am

Give it up to God. You are gonna be fine. I've gone through the same. My 5 yr. old was put on Topamax for gran-mal seizures, I am on it now (400mg) for migraines. I'm weening myself off of it because it's making me go bald, I sting all the time, and my vision is getting blurry. Keep your faith, if you're not a believer, I will pray for you. If you are, I will.

realistic

1/22/10 3:50am

Please, tell me you're not serious. Oh, never mind. I'm sure you are serious. Get real here. Giving it up to God isn't going to take care of this. She isn't "gonna be fine" just because she give it up to God. If that were true, none of us would need medications or doctors.

Ever hear "God helps those who help themselves?" God blesses doctors and other health care professionals and researchers with the intelligence and other gifts to help us. Prayer is fine, but we also need to do for ourselves.

from...

a realistic Christian minister

DiStReSSeD

1/22/10 4:04pm

Yes Prayer is very important, but it surely isn't a cure for my illness or problem!! GOD does want us to take care of our bodies; so that's why im trying to understand the medications on the market for certain illnesses! I'm just very torn up about the side effect of this one medication in particular!! "Topomax" because i had no idea of the hair thinning! I'm also going through menopause at a very young age (39). I feel this may be a cause of the hair thinning as well, I was forced into menopause because of having a Total Abdominal Hysterctomy at the tender age of 28. I just cant catch a break, and I'm very depressed now more than ever because i wear my hair short; so the thinning to me is very noticeable. Everyone say it's not, but I'm very vain about my hair...lol, and love looking good. Not so vain, but im very concerned that it won't ever be the same!! I want to come off this medication, but afraid of the "Seizures"

Anonymous

1/22/10 6:52pm

I'm so sorry, I certainly didn't mean for you to not follow any kind of medical advice or treatment that will help. I just meant to try your hardest to put your fears, pain, and anxiety in His hands. I guess I worded it poorly.

DiStReSSeD

1/22/10 7:49pm

Naww no bad feelings sweetie!! I didn't take it the wrong way @ all, but I definitely agree with you when You say to "Pray" because when all else fails "Prayer" will pull us through the fears that we have. I'm just so angry that the M.D. don't tell you all the side effects of the medications out here on the market. I did research on most of them, and this is how i got my answer's. I pray everyday that I will understand what my body is going through & pray for those out there that's going through the same thing!! Thanks so much for the support!!!

Anonymous

1/23/10 1:09pm

I was diagnosed with Crohn's in 2004 and had to have 4 ft. of intestines removed since, so I struggle with that. But I'm like you, it's not really vanity, I've always had a thick long gorgeous head of hair, and in the last 6 months it has broke off and thinned out, and it's embarrassing. I hate going out, i feel people staring at me wondering what's going on. My regular doctor says, "Oh no Topamax doesn't cause baldness." I would never have had a clue otherwise had I not got on the net and saw all the stories like yours. I see a dermatologist Monday. I'm just hoping he's more open to it than my regular doctor. My real fear is that my hair won't come back. I've been on Topamax 3 years, I've weened myself down to 100mg a day now. I think the stress of worrying about the hair loss makes you lose as much as the meds.

DiStReSSeD

1/23/10 9:19pm

Honey please let me know what your dermatologist says (whether it's the medication)?? Yes you are so right the constant worrying is worse than the medication itself because the stress is what will cause the hair to fall out. I try not to worry about the thinning, but i worry so much. My husband always tell me that he's going to break all the mirror's....lol He's always telling me that my hair is beautiful, but it's me!! Im on 300 mg a day...150 am & 150 pm. I want off of the medication period!!!!!!!!!!!

Anonymous

1/25/10 12:41am

I will, I'm worried he won't take me serious either. But either way, I'm off the Topamax. I have not been stinging for 6-7 days. I've lowered my dosages (as I told you), and this is not a coincidence. Your husband sounds like mine. He says, "Well I'm going bald, so this is just something else we'll do together." I'm down to 50mg starting today. That's a big jump from 800mg. The side effects from that are rough. But not as bad as I thought. Only a small headache (not migraine). And you know as well as I that a headache is a joke compared to a migraine. But I will be sure to post tomorrow sometime what he tells me. My mother is an RN, and she says he is a wonderful specialist. I think it's time for CLASS ACTION. And how are you doing? I haven't seen you post on your doctor visit.

Anonymous

10/ 2/07 9:44pm

I was on Topamax for about 6 months. I am now left with permanente medical conditions which I feel is due to Topamax. I was on a very, very low dose too!! My hair started falling out more than usual as soon as I started taking the medication. I had the following side effects to the drug: Memory problems (actually got lost several times), numbness and tingling in my hands and feet, I couldn't sweat, tongue and mouth burning and cracking (Psorisis), hair falling out and Glaucoma.

When I started having trouble with a burning and cracking tongue I went to a dermatologist. My doctor told me that Topamax is known to cause Psorisis. So, now along with everything else I have psorisis of the tongue, which there is NO CURE for!! I stopped Topamax when my tongue got much worse. That was a bad thing for me to do....do not stop taking it all of a sudden!!! I should have tapered off alot more than I did. Anyway, 4 months later my hair started falling out....I mean "FALLING OUT" by hand fulls!!! It has been like I am on Chemo or something. This has been going on since July '07 and I am close to having to start wearing a wig!!! I have also been diagnosed now with having "GLAUCOMA"!!! I also blame this on the Topamax!! This is not a good drug!! So, my advise is to talk to your doctor and have him taper you off. If your hair starts falling out...be patient. I would also go get your eyes tested for Glaucoma.

Best of luck to you!!

learnedmylesson

9/28/10 12:28pm

Hello to everyone-- I am brand new to the site, but felt compelled to add a comment-- ladies I am a 43 year old female who was given a drug called lamictal for a very mild mood disorder. I broke out in a rash, so my internist switched me to topamax. Let me state that I was on Lamictal for 10 days before I was switched to topamax and I waited a week to get it out of my system. My body may be a little more sensitive than others, but I was on topamax at 25 mg twice a day-- which after the first dose I become so anxious I had a panic attack, so i did not ever take the recommended dosage of two pills. I had noticed with the lamictal that my hair was "shedding" a bit but after the topamax(WHICH I WAS ON FOR 5 DAYS!!) my hair is so thin. Before these drugs, I had hair so thick that I paid to have my hairdresser thin it out. I immediately quit tking the topamax and have been searching feverishly for any help to hold on to the hair I have left-- do not get me wrong--I do not have giant bald patches (thankyou God) but PLEASE PLEASE make sure that your benefits from this medication are HUGE because the side effects are many...I feel as if I have had toxic waste put into me-- this is heavy duty stuff-if you are in doubt and are a woman who loves her hair-- ask for an alternate medicine-- I know that some of you with seizures etc., may not have that luxury, and I am not directing this at you-- it is at the others who think it is a miracle weight loss pill, or a mood control pill--- people please- take this seriously-- memory loss so bad that I was afraid to drive my kids anywhere. Thoughts of what it might be like to walk in the clouds with the dead-- s*(t like that-- I may never post another thing on here, but if I can help just one person stay away from this, then it wasn't a waste of time posting it-- best wishes to all of you and PLEASE post any hair tips

lynchic

9/29/10 11:44am

welcome to the site learned! I wonder if hair loss is something with anti-seizure meds.. I was never on Topomax, but lost a lot of hair on Depakote. I was always shedding hair and not normal amounts! Between that and the weight gain as well as other side effects, I stopped it months ago now. I am just on amitriptyline now and while I am still struggling with my weight (seems like almost all migraine meds have this side effect!), my hair has thickened back up. I'm not sure if it's back to where it was fully or not, but I had REALLY thick hair. My advice for good hair to anyone is protein, especially the good kinds. Try adding either fish oil or flax oil (fish oil and my digestive tract do NOT work well together) to your diet. If it doesn't work, at least it won't hurt anything!

learnedmylesson

9/29/10 11:54am

lynchic- thankyou so much for the advice and i will be gettin some fish oil this weekend. I have never taken depakote, and i know the struggles of weight (I am a post gastric bypass patient and after two years have lost over 175 lbs)--so i wish you and anyone else out there the best with that... i may sound ignorant, but is the other drug you mentioned (the amitriptolyne sp?) used for mood disorers and if so, do you or anyone else out there have luck with it? I have a drs appointment this friday and i would like to have a little information before i head back in there for another drug UUUGGGGGHHHH thankyou so very much

lynchic

9/29/10 2:41pm

I know what you mean about "another drug"! I go back to my neurologist tomorrow.. we will see if he tries me on anything else. The amitryptaline is an anti-depressant, also used for migraines (at lower levels than used for actual depression). Other than the weight, it makes you sleepy but for me it helps calm me down and I actually sleep through the night!! I have multiple triggers which it doesn't help for, but I was having trouble with migraines in the morning from not getting enough sleep (or really good enough sleep). This has helped get rid of those! So it's part of the equation, now I just need to find something to help prevent the rest of my headaches.

learnedmylesson

9/29/10 3:18pm

lynchic -again-thankyou for being so open with your treatment and condition. i just ask questions with disregard sometimes because i have struggled so much with this that i am glad to see there are others that are doing their best to deal with it too. i do not have migraines, and feel extremely blessed that i don't. i am hoping for a mood stabilizer that wont cause weight gain, but more specifically no or little hair loss--best of luck to you on finding the right combo of meds for your system. and please if you or anyone has a suggestion on something that has worked for them, please please post it so i can research it more before the dreaded md visit.......

shrinkgirl

10/ 3/07 9:40am

Thanks for everyone's comments. I'm really sorry to hear about other people's bad experiences with the topamax, and I'm grateful that mine have been better. As it turns out, my hair loss has not been severe and probably is not due to topamax. It might actually be the beta blocker I was taking. I went to my hair dresser recently for my usual highlighting job, and she said I have not lost much at all since I saw her last 3 months ago. I was growing out a perm, and she thinks that the changes I was noticing were most normally changes in texture and volume that were due to the my hair going back to it's natural texture (I had perms for 20 years!), and to the fact that I was way overdue for a haircut.

Overall, I still seem to be doing well with topamax, although I know it doesn't treat everyone so well. I wish the best to those of you who are struggling. You should always trust your instincts and question the doctors!

Robin

Carol

12/17/07 5:55pm

I was on Topamax for 6 months and all of sudden my hair started falling out like crazy. I've stopped it and started doing Rogaine. I can only hope it starts falling out. The doctor who prescribed it is aware it causes hair loss, but I didn't know it could be to this extent! The earlier poster mentioned glaucoma and this is a known side effect. All of her other tinglings, etc. are also common with Topamax.

texan76

12/24/07 1:59pm

Carol,

I have been on Topamax since November 2006 and have just had the hair loss begin September or October-I cant really be sure. It is falling out so fast I don't know what to do. I actually take the Topamax for a seizure disorder, but this website is the first of it's kind that I can find many postings with this side effect anywhere. My doctor has always brushed off my suggestions at any side effects- emotional ,etc so this time I am going through my endo. Since it is for seizures, I will have to continue until I am prescribed something else and reach a therapeutic level. :( I have been instructed to purchase iron supplements, the biotin and I have found a different shampoo in lieu of nioxin. I would be greatly interested to know how things are going and how they turn out for you in the future. My best to you. Thanks.

Stevie44875

10/25/10 9:13pm

First always find a doctor who listens to you! I had a horrible doctor who thought it was his way or no way. My new doctor is great and figured it was topamax that was causing my hairloss. I took topamax for about 6 months then it all went downhill. If i would have read these post i would never have taken it cause losing hair messes up your head. It has taken me 2 months for the hair loss to slow way down and i do take bioton (hairdresser recommended) and vitamins. Topamax did work great for migraine prevention until the side effects overtook me.

learnedmylesson

10/26/10 10:59am

I am sorry this happened to you and I wanted to encourage others-- I am off topamax and have also started taking vitamins for hair recommended by my hair dresser--biotin, zinc and selenium. It does work and you should notice a change in texture first (according to her and I did) Another question I wanted to ask anyone out there- I now am having tiny twitches in my cheek-- I have been off topamax and then I tried trileptal-- only for five days-- side effects were awful as well-- hair loss, rash--do these twitches subside????? please respond-- I am on nothing at the moment and I will never take any more anti-convulsants for mood disorder. The three I tried- topamax, lamictal and trileptal have all had lasting effects on me and were a nightmare for side effects-- out of the trio- lamictal was an awesome drug--but the side effects were too many to outweigh the benefits--BE CAREFUL ON THESE DRUGS-- I am scared to death I am going to have a permanent tic in my cheek----

Debbie

1/ 8/08 1:46pm

I was also on topamx but with all the side effects my mind and body couldn't take it anymore. My main concern was my hair loss, I can't beleive how much hair I have lost. I have notice and my friends and family noticed too. I am scared to go bald! Did anybody take any vitamins or supplement to help regrow your hair?

Julie

1/25/08 5:14pm

I took every vitamin and supplemtns you can imagine. Prenatal vitamins, biotin, folic acid, the list is a mile long. I had super thick hair and now it's a ratty, thin little nothing on my head. I'm a 34 year old female and practically bald. It came out like I had chemo - massive chunks at a time. It only stopped after I stopped taking the Topamax. I'm wondering if anyone knows if it will grow back at all? I may never have that full, thick awesome hair, but bald spots and scalps at 34? My hair took 20 minutes to blow dry it was so thick, now it takes about 3 minutes....

Andrea M

2/ 3/08 7:48pm

Julie,

Has your hair loss stopped? I stopped the topomax months agao but the hairloss continues.

Andrea

Anonymous

5/ 4/08 9:50pm

ME too. I stopped mid-october 07 and 7 months later I still think that it is falling out...and I don't see much regrowth at all!

Anonymous

7/13/08 10:02am

Hi Julie, I used Topamax for about 6 months and had drastic hair loss, like 50% of my hair and also almost all of my eyelashes came out also. I looked really bad. This was right after my wedding. I also went from like 120 ponds to 105. That was great but the hair loss was terrible. I had to go to alot of doctors and they told me the Topamax put my hair into the no growth cycle Telegen-Efluvium. My hair did grow back and so did my eyelashes. Took about 5 months for all the eyelashes and longer for my hair. It will grow back but it will be thinner and finer.

Debbie

Anonymous

7/14/08 9:18am

Andrea, my hair loss did finally stop. i guess it's been about 6 months now since i quit taking it, but within a month of stopping, it doesn't fall out to the extent it was. i've heard it won't grow back to the big thick mane i had before which is difficult for me to accept. I'm just lucky I had so much to begin with that at least I do have a little bit left. Good luck, i know how miseriable this is.

Natalie

7/16/08 5:20pm

I am stunned, yet cautiously "thankful" to find there are others who have struggled as I have with this seemingly strange phenomenon. I started on Topamax in July/August 2007--after a few months, I went up to the 300 mg dose and stayed there until June 2008. Like Julie, I am a 33 year-old female that has always had more hair than I knew what to do with--since my hair is very dark brown and my skin in pale white, you can easily see how thin it has grown on top. I don't have bald patches--just less hair overall. I have been on so many medications in the last year, I had no idea the hair loss could be tied to one of them--thinking, rather, it was a combination of all the mess I was on + the pain + the stress. I have been doubly surprised by my hair loss because I started using Resthairation shampoo and conditioner in October/November 2007 when I noticed my hair was dramatically thinning!! My situation has NOT gotten better, but I suppose it's possible the shampoo/conditioner "maintained" my situation by giving me back hair I would have otherwise lost as my Topamax dose increased. UGH!!!

My hairdresser suggested asking the dermatologist about cortisone shots to promote/increase hair growth. I will post response/results after I see her in August.

I just want to pass along my sincere sympathy to all of you who are still experiencing severe pain as I am and/or side effects from this drug. Unlike others, I did not experience the weight loss (unfortunately) or the "goofiness" on Topamax--I also did not experience relief from migraines. I totally feel like I am no longer "living", but rather "existing"--and it's a pretty bum existence at that right now. Working hard to get/stay positive...

Cindy

8/18/08 9:23pm

Hello,

I am a 41 year old female and have been taking Topamax since Oct. 2007. I have been taking 300 mg for 4 months now (since April 2008) and have noticed that my hair has thinned significantly. I have always had fine hair, but I have noticed recently that I have lost about a third to a half of what I had before I started on Topamax. At first I thought it was because I had my hair re-layered, but that isn't it at all. I don't have any bald spots, but there is definatley a significant hair loss.

I also noticed that in addition to my fingertips being numb all the time, that my scalp is also numb. I wonder if this has something to do with the hair falling out? Loss of blood supply to the scalp?

I have had no other side effects, including no weight loss (unfortunately for me) and no loss in appetite (also unfortunately for me), but I cannot afford to lose any more hair. I don't think I could take wearing a wig, or worse, being bald!

Natalie, are you still on Topamax? If not, what are you currently taking and is it better? Any side effects?

I pray that a cure/medication is found soon for migraines that has no side effects.

nataliathespy

8/19/08 8:22am

Cindy, I am so very sorry you are also experiencing these side effects to Topamax. I was switched off of Topamax in May/June to Keppra--my final dose for Topamax was also 300 mg. Keppra didn't do anything for me, so I was switched to Depakote. Depakote did not help with the pain, but it's new side effect for me was an almost constant extreme fatigue--so much so, I completely felt like a zombie while I was on it. I literally slept for 12-15 hours a day. Liver and pancreas problems can result from taking Depakote (oh, and birth defects!!); I was tested for these, but like with all other blood tests and spinal tap, found "normal". For the last few weeks, I have been off preventative meds altogether (at the direction of my neurologist) and have been referred to the Michigan Headpain and Neurological Institute (MHNI) in Ann Arbor, MI. I'm working with them to set up a date for evalution--hopefully, it will work out that I can go there in September.

Right now, all I'm taking is 400 mg of Riboflavin and Darvocet for the pain (somewhere between 2-4 pills a day). Still feeling very miserable.

Cindy, like you, I did not experience the "beneficial" side effect of weight loss/decreased appetite, but I also did not experience any numbness/tingling. I will tell you that my friend who was on Topamax for nerve problems (not migraines) did experience this, and sometimes felt her feet were "on fire".

FYI on the hair loss front--I was just able to see my dermatologist and told her about my concerns. She said that in my case, I was not experiencing alopecia (sp?)--bald spots, etc.--but rather general pattern hair loss; cortozone shots would not be appropriate for me. She ordered a blood test to see if my hormone levels were out of whack--she said increased levels of testosterone could cause hair growth where I didn't want it (which I'm thankfully not experiencing!) and hair loss where I did want it. The blood test did not reveal any such imbalance. Now I'm just waiting on a call back from her office to find out what medicine I could be on to help promote hair re-growth??? She says that I should get it back now that I'm off of Topamax, but I sure haven't seen any improvement.

Again, Cindy and others, I am so sorry that we're experiencing this. I've reached yet another level of desperation, and I'm truly hoping MHNI can help. To all, take care--I hope you can find treatment soon to help.

kellylapana

10/ 5/08 5:37pm

I am only taking about 100 125 mg a day, but noticed my hair has started to come out. to be fair I am not sure if it was as much before I had a bad hair extentions experience though. However, I am worried if I go off the topamax I will gain weight fast. what should I do my now doctor is a total putz?

scared mom

10/14/08 7:37pm

Finally,,, I find a link to Topomax and my daughters hair loss --- she just stopped taking it. But she has gone from a full xtra thick head of hair to me noticing hair everywhere but on her head -- I am so glad to know that their is a connection -- I was concerned she had a thyroid problem and was taking her for blood work!!

s. allison

11/ 7/08 1:46pm

I am on a cocktail of meds for my BPD, but thought my hair loss was due to poor nutrition (I have an eating disorder) and aging (I'm 41). I now believe Topamax is the primary culprit, along with perhaps Lamictal (also an antiepileptic). I used to have ultra-thick hair, and now I have about 50% less; it not only falls out in clumps, but it is also more fly away. I believe Topamax has many toxic effects, and I want off it asap.

Anonymous

2/ 2/09 6:43am

Hi gals. Like you all, I went on Topamax in May 2007. By mid summer was losing TONS of hair. Stopped taking it in Oct. 2007 but still had massive hair loss. Demanded that my FERRITIN iron be tested. It was 7. After a year of iron supplements it was only up to 83 and I was still losing hair. I just went on liquid iron called Floradix iron and herbs 4 days ago and finally hair loss has slowed way down to normal levels for the first time in a year and a half. I am also taking a liquid chlorophyll supplement and Cell food. Chlorophyll from Alfalfa builds blood levels and the Cell Food increased oxygen in the body. These are expensive but if it stops my hair loss, so worth it. Just wanted to share my improvement with you in the hopes that my experience can help someone else. Good luck and God Bless.

Dianna

10/19/09 4:35pm

Where can you find this liquid iron? Does it have to be presecribed?? I'm so happy to have found this site and to know I'm not alone! I'm so DEPRESSED over my hair loss!! For months I've been trying to figure out why, and I've been trying EVERYTHING to remedy it--shampoos, vitamins, you name it. I've been on TOMAMAX for my migraines for 7 months and never made the corralation until now. I'M SO ANGRY MY DOCTOR NEVER MENTIONED THIS AS A POSSIBLE SIDE EFFECT!. I already had very thin hair to begin with so you can imagine what it looks like now. I'm still a pretty young woman so the effect this is having on my confidence is horrendous): I want off these pills now! I just hope my hair grows back....

Anonymous

10/26/09 1:13pm

I got mine at Whole Foods but I know you can buy it online if you google Floradix iron supplement. I am no longer taking it though. It still works but I started juicing and discovered that juicing fresh whole beets did the same thing for me at a much reduced cost. It is more work but I also feel the beet juice detoxifies my body and lord knows I need that after Topamax poisoned it. I hate to tell any newbees here but going off the medication does NOT FIX the hair loss. I have been off of it for 2 years now and still have days that are not good. Days where a lot of hair comes out in the shower or in my brush and I still feel like crying. These are the days where I didn't get my iron from beet juice or Floradix iron and herbs and are always the days when I am menstrating. There is some correlation between Topamax, the innability to stope iron in your body and hair loss. I would bet my life on it. Good luck to all you thin haired girls like me out there. I truly feel your pain but want to remind all of you. Your hair, although your crowning glory, is now a measure of your worth or value. You can always go buy a wig if you want to remember what thick hair looks like on you. It is not a cure but will allow you to go throughout the day picking hair off your arms, legs, back, coffee cup ect. . and focus on something other than hair. I know how easy that subject can almost consume your life. God Bless!

ali

10/26/09 1:22pm

Correction to above post. I mis-typed. Your hair is NOT a Measure of your worth!!!!!Sorry for incorrectly typing now in my above reply. Typing is not my forte.

Prichi

5/ 2/10 11:42pm

I have been going crazy for the last couple of days telling my husband that I'm losing my hair. Thank God I decided to look up Topomax. I have to have a chat with my doctor after reading all these comments I'm going to ask her if there are are any other medications she can prescribe. I had no idea topomax was so harmful I love this medication it really has stopped my migraines I can live a normal life. But I have maybe 25% of my hair left and I agree with many others I am very vain about my looks, also sad about realizing my hair will never be the same I am only 27. Does anyone know what other medications work as efficiently?

learnedmylesson

10/ 1/10 3:17pm

just a post to let you know that i went to my dr today and told him all i wanted was a drug to stabilize my moods that would not cause weight gain OR hair loss-- guys, he is a princeton university graduate,an internist, and is affiliated with 4 very prestigious hospitals.....he was baffled.... said he had to consult with a few colleagues..REALLY???? i love my dr and he is truly trying to help me-- but after lamictal and a rash, topamax and going almost bald-- is that it???? please comment

Nancy Harris Bonk, Health Guide

10/ 1/10 10:24pm

Hi there,

No, I don't think that "is it" rather, your doctor just may be at a loss now. Some patients, myself included, are "too complicated" for one doctor and having another set of eyes on your case is not a bad idea.

Having two drugs in the same class of medications, doesn't rule out the entire class. I've tried Topamax, Neurontin, Zonegran, Lamictal and now I am giving Keppra a try. I didn't do great with Topamax, just didn't work well - and I had some pretty good luck with Zonegran, but it seemed like time for a change.

A "true" Migraine specialist may be in order now. The thing is it's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Don't give up, there are over 100 medications available for Migraine prevention. It can be so frustrating to keep trying new medications, it makes us seem as if we've tried them all, but with so many possible preventives, it's literally impossible! to have tried them all. See Migraine preventive medications - too many options to give up! for more information.

I hope this helps

Nancy

learnedmylesson

10/ 2/10 10:50am

Great information- thankyou for your time and effort posting it-- I will tell you he gave me fioricett for tension headache and it is working somewhat and I am going to call him on monday to rcv further instructions on the mood stabilization-- you guys have been such a big help and boost to me--just knowing i am not alone and others care. i feel a little more hopeful, as i have always felt the actual patients who take the medication are the real experts. Thankyou nancy and i will post mondays outcome-- best wishes to all

Balding Topomax

9/ 3/09 12:51am

YOU ARE NOT ALONE!

And Doctors will look at you like you are insane. Well, if they would take the Topomax and go completely bald, then maybe THEY TOO would listen!!!!

I have been on Topomax for migraine prevention for 4 yrs and I have now 3 hair left on my head!!! I used to have beautiful, full shiny hair and now my hair is brittle and thin and non-existing. I don't care if I have to medicate myself with triptans for a lifetime. Being the ever balding woman will give me more migraines than anything else. DOCTORS SHOULD WARN YOU ABOUT THIS!!! I am going off it now, thank GOD! I need my hair back. Hopefully, some of it will grow back (I am praying!). But if you don't necessarily need to take this drug to save your life, then DONT. I wish someone would have warned me.

Anonymous

6/ 5/10 1:28pm

I have been on Topamax for about 3 years and have recently noticed my hair thinning on top. I take Topamax for seizures and migranes. I decided to check out if it was the drugs I am taking, since hair loss in women is rare and came upon this web site. I will now discuss this with my neurologist, to see if I can wean off this drug or possibly take another. Thank you all for posting your information.

learnedmylesson

10/ 1/10 3:27pm

not to scare you at all- but i lost a third of my beautiful hair in a month...run, dont walk to your nearest trash can and dump that toxic waste--- the worst drug (next to lamictal) i have ever taken. thank God im off it

erika

12/10/10 3:39pm

my question is, can you regrow the hair you've lost once you stop the medication? i've read through all the posts and i don't see anyone really addressing this issue directly. i am on topamax and have noticed some thining predominantly on my right side. i have very full hair (thankfully) so it isn't as noticeable to others, but i can DEFINITELY tell a huge difference. i made a call to my doctor today to make a switch...but i want to know if the hair i've lost will return once i stop taking this medication? on the flip side, i am defintiely doing all i can to feed my hair--supplements/herbs and vitamins and whole foods. it can't hurt!! thanks in advance!

Amy

1/14/11 3:48pm

My experience with Topomax has been pretty much the same. I had long, thick blonde hair. After taking the med for about 6 months, my hairdresser made a comment to me. He said, what's going on with your hair? My beautiful hair, had thinned out, became like straw. Also I had breakage all over. I never put the connection to the drug. I even went to the doctor and she said it was stress. I also was having bladder issues. Went to the doctor 3 times. They kept saying oh it may be a small infection, nothing major. I had the urge to go to the bathroom every 5 minutes. With a full bladder. Stopped drinking for a whole day and still went every few minutes. I stopped taking topomax and my hair is growing back, and the bladder is feeling much better. Life with headaches is depressing, but I would rather the 2 headaches a month, and have hair.

Kathy

6/20/11 7:38pm

Thank you! I've been on this toxic waste for 2yrs. The migraines are gone and I've lost 50 lbs in 5 months. But with it also lost most of my hair. I work in the health field. We searched the PDR and could not find this as a side effect. Knowing now its not just me I now don't feel as crazy. The only Dr who didn't treat me like I was crazy was the dermatologist. I'm now deep in debt trying to find a reason for the loss. And it was the topamax. Hopefully as I decrease it after reading all of your inputs I will get a little back. But I will settle for it stopping. Good luck to you all. I truly think the migraines were easier then the stress of the search for the hairloss. I don't look forward to them again this was my last resort. I've tried all the other preventatives. Again thank you all for your letter which have relieved some of my stress, Kathy

9/28/11 12:56pm

I'm dealing with the same Topamax hair loss hell.. I was on it for about 2.5 years at 100mg then 75 mg .. In July of this year I noticed hair falling out but not too bad-noticeable. I thought it was a hormone imbalance since I am prone to that. Also, I was on Seasonique every day and thought that was it. I stopped Topamax 6 weeks ago and the hair loss is worse now. I did also stop BCP about 2 weeks ago and that may be making it worse also. It is very very very depressing.. I was social and now I don't want to leave the house, work out, anything. I am also taking Floradix, prenatals, Nioxin and one million other supplements. My hair is so see through.. Every day I am analyzing the hairs that fall out when combing it after shower and it is not going down in numbers. I can't believe that a medication causes this much damage - even when it is stopped. I saw a hair specialist who said I had Telegen Affluvium.. I just want it to stop falling out. I will never take another medicine again before researching it.. I was taking this BTW for migraines.. but they were manageable without it.. just had several bad ones per month so my neurologist recommended this. UGH. Would never have gone on it if I'd known. I will get my endocrinologist results back tomorrow and hopefully that will shed some light into how to stop this horror. I just started taking Floradix 3-4 days ago so I hope that will help.

I know the question was asked already and some have answered but really needing some stories of hope.. Did anyone have success after stoping Topamax with any other product? Did anyone have significant hairloss after stoping the BCP and if you are on one, do you have a recommendation for a BCP? Thanks! J

Topamax and hair loss

Ask a Question