Topamax and hair loss

shrinkgirl Community Member July 08, 2007
  • 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?

     

81 Comments
  • Teri Robert
    Health Guide
    Jul. 08, 2007
    Yes, hair loss IS listed as a potential side effect. It's called alopecia.
    • shrinkgirl
      Jul. 08, 2007
      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
      bald eagle
      Apr. 24, 2014

      i have been on topamax 3oomg for some years now because of chronic migraines and have started losing my hair at an alarming rate (female) the drug helps reduce the severity and occurances of the migraines and i am loath to start the endless round of experiments again, does anyone know how i can  stop the hair loss?

       

    • Teri Robert
      Health Guide
      Apr. 24, 2014

      baldeagle,

       

      I don't know of anyone who has found any solution to hair loss from Topamax other than stopping the medication.

       

      Sorry,

      Teri

    • J.T.
      Aug. 18, 2014

      That's right! Alopecia! No wonder it stumped me!

    • Teri Robert
      Health Guide
      Aug. 18, 2014

      JT,

       

      It would be easier if they came right out and said "hair loss," wouldn't it. Cool

       

      Teri

       

  • Alee132@yahoo.com
    Nov. 19, 2014
    I can't believe after all of the Drs and dermatologists I have seen, it took for me to come to this site to find out why 40% of my hair fell out!!
  • Alee132@yahoo.com
    Nov. 19, 2014
    I can't believe after all of the Drs and dermatologists I have seen, it took for me to come to this site to find out why 40% of my hair fell out!!
  • Alee132@yahoo.com
    Nov. 19, 2014
    I can't believe after all of the Drs and dermatologists I have seen, it took for me to come to this site to find out why 40% of my hair fell out!!
  • Alee132@yahoo.com
    Nov. 19, 2014
    I can't believe after all of the Drs and dermatologists I have seen, it took for me to come to this site to find out why 40% of my hair fell out!!
  • jacquelynwheeler07
    Nov. 18, 2014
    I just started taking it about 1 month ago and my hair is falling out by the hand full. It was shoulder length and now at my ears and so thin and fragile. I'm scared to comb and brush it daily
    • Alee132@yahoo.com
      Nov. 19, 2014
      I've been on topamax for about a year now and have lost about 30-40% of my hair! I'm so glad I'm reading that it could be this pill I am taking. I have been going crazy trying to find out the cause of my hair loss :( blood tests ect...
  • gmindyg1
    Oct. 31, 2014
    First of all, I'm not sure why everyone is saying they never see hair loss listed as a side effect of Topamax. I went on the N.I.H. website and it is right there in black and white. Now...what to do about it is another story! I am on 300 mg of Topamax a day fo Epilepsy and my Neurologist is not so willing to change the med due to my type of seizures. I'm 56...
    RHMLucky777
    Read More
    First of all, I'm not sure why everyone is saying they never see hair loss listed as a side effect of Topamax. I went on the N.I.H. website and it is right there in black and white. Now...what to do about it is another story! I am on 300 mg of Topamax a day fo Epilepsy and my Neurologist is not so willing to change the med due to my type of seizures. I'm 56 yrs old, and they just started about 4 yrs ago...though he claims I have an odd finding on my E.E.G. that shows I have had some type of predisposition for seizures since a child ( hmmm, weird ). Anyway...my seizures are finally under control, and he isn't so willing to mess with the dosage now...but now my hair is falling out in huge amounts. I always had thick nice hair! I wonder if some of this is also due to menopause ...who knows? All I know is I'm not a happy camper! I have a Dr appointment next week, and can't WAIT to show him the HUGE difference in my hair. Knowing him, he will say it's NOT from Topamax!...but we all know better, don't we! I don't think I am willing to wean off of this med, to try another anti seizure med just to see if my hair will come back, taking the chance of seizing, losing my license, or worse! There is a lot at stake, you know?
  • dreamerswaltz46
    Oct. 26, 2014

    Thank you so very much for your comments regarding Topamax and hair loss! I am a 56-year old woman who thought it might be time for my children to put me in the 'looney bin'.  I have been taking a very low dosage of this vile drug for nearly two years ~ and, did not for one minute think that all of the symptoms that I've been having could be associated...

    RHMLucky777

    Read More

    Thank you so very much for your comments regarding Topamax and hair loss! I am a 56-year old woman who thought it might be time for my children to put me in the 'looney bin'.  I have been taking a very low dosage of this vile drug for nearly two years ~ and, did not for one minute think that all of the symptoms that I've been having could be associated with one small pill! The massive breakage and hair loss that I have experienced has left my formerly 'waist-long and vibrant' Rapunzel-like ponytail a mere straw that barely will hold a rubber band!  I was a nervous wreck prior to discovering where the fault lay.  Now ~ I am angry! Do these drug manufacturers actually sleep soundly at night?  Do they have their physicians prescribe this disasterous stuff to their families? Is it really about the almighty dollar?  Who sacrifices the health and welfare of the public for financial gain?  Holy toledo! 

  • J.T.
    Aug. 19, 2014

    Oh yeah I was also taking a crapload of supplements but they didn't do squat. However somebody on Herr swears by Biotin with Selenium which I'm going to try ASAP! I'll post the results!

    Peace!

  • J.T.
    Aug. 19, 2014

    I was taking topamax for bipolar disorder. I was at 200 mg a day for about a year to hopefully reverse the severe weight gain that I incurred while on Depakote, another one of Satan's drugs. Well I lost the weight, and it kept my mood in check. But then about 9 to 10 months into the treatment I noticed my hair, which is about around the center of my back, suddenly...

    RHMLucky777

    Read More

    I was taking topamax for bipolar disorder. I was at 200 mg a day for about a year to hopefully reverse the severe weight gain that I incurred while on Depakote, another one of Satan's drugs. Well I lost the weight, and it kept my mood in check. But then about 9 to 10 months into the treatment I noticed my hair, which is about around the center of my back, suddenly start to fall out real easily. I hardly ever used a brush I'd just start styling into place using my fingers (which is what all men over 40 should do). I saw a Dr. and his first thought was male pattern baldness setting in, so after careful thought I got on Propecia. But 6 to 8 months later my hair became dry and brittle and looked nothing like it did before which scared the crap out of me because I'm a guitarist with a metal band that 99.99999% of you have seen before. Luckily, our hairdressers backstage, God bless them, perform miracles on us aging geezers before a show. But my hair was not that bad at all prior to this and hardly needed any messing with before a show, but now without our miracle workers I'd look like crap! Thankfully, my Dr. did say it is reversible, but she took me off it anyway and put me on Trileptol. Anybody have any experience with that Satanic drug? I haven't started taking it, in fact I just got my script today, but now I'm afraid of all these drugs. I wish Dr.s should try them out on themselves before giving them out to the public! Then we'd see a little more responsibility in prescribing medication! I'm staying on the Propecia though, even though it does have it's own side effects, but so far 9 months into using it I'm OK with it. It was the damned Topamax that was destroying my hair and I probably would've ended up bald had I not stopped although it will probably continue for a while since it's still in my system.

    • jamey.hirschman
      Aug. 29, 2014

      JH

       

      I have been on Topamax 50mg 2x a day for 4 weeks for a head injury, and my hair has been coming out since weeks 2. I am not sure if the Biotin is working or not. If anyone else knows of any other supplements are working then I would like to know. I am hoping to get off this medication soon. It has helped me though. I have noted thet most of the side...

      RHMLucky777

      Read More

      JH

       

      I have been on Topamax 50mg 2x a day for 4 weeks for a head injury, and my hair has been coming out since weeks 2. I am not sure if the Biotin is working or not. If anyone else knows of any other supplements are working then I would like to know. I am hoping to get off this medication soon. It has helped me though. I have noted thet most of the side effects are true to me, annoying but ok for short term. Hair loss is the worst considering i had great thick hair.

    • Cyndi Jordan
      Health Guide
      Aug. 29, 2014

      JH - Just a reminder to be sure to check any kind of supplements with your personal physican.  While these are not regulated by the FDA, they do have side effects and can have interactions with medications you are taking. 

      Cyndi

    • brandychristopher78
      Sep. 22, 2014

      Hey JT,

      Have you tried the new med? And how's the side effects,  if any? I've been on Topamax for 9 weeks and even though it's been awesome for controlling my migraines, but the side effects are horrific! Btw, I've probably seen you rockin' in concert 😄

      Brandy

  • mo
    mo
    Aug. 02, 2014

    I tried topamax for severe chronic migraine and couldn't handle the druggy side effects (never made it past 50mg/day}, so they switched me to zonisamide which is evidently similar. I was on these 2 drugs for a total of 2 weeks. I had waist-length hair, and I lost more hair in those 2 weeks than I normally do in a year. I take 5000mcg biotin/day. It continued...

    RHMLucky777

    Read More

    I tried topamax for severe chronic migraine and couldn't handle the druggy side effects (never made it past 50mg/day}, so they switched me to zonisamide which is evidently similar. I was on these 2 drugs for a total of 2 weeks. I had waist-length hair, and I lost more hair in those 2 weeks than I normally do in a year. I take 5000mcg biotin/day. It continued to fall out for 3 or 4 weeks after I stopped the drugs.

     

    Now a year and a half later and no improvement w/the migraines and in danger of losing everything and being on the streets because it's a bitch to get help or disability when u have such severe aura you have cognitive impairment and blackout vertigo attacks that you can't understand nor navigate the system, I'm now trying it again because i can no longer take Imitrex since it's causing chest pains and i therefore have no options for pain relief other than taking the Imitrex with a high risk of heart attack and stroke because doctors are so afraid of prescribing narcotics, that it's acceptable to them that i never sleep and am in near constant pain. I now have very short hair but I'll be keeping a close eye in the shower. I'm a mess on just 25mg/day, as I now remember I was the last time I tried it, but will give it at least a few more days.  I'll have to try botox next.

  • jennifer b
    Apr. 08, 2014

    nly thing I every liked about myself was my hair. I has  always thick , naturaly curly when long. Inlet iybgrow out very long onlybtook about 6 months it grows fast, was supernthicknand  always and curly. I had a pick of it at that time. At this time I was on 20 mg of Topmax then I went to 50 a few weeks later 100 2× daily but tooknonce a day....

    RHMLucky777

    Read More

    nly thing I every liked about myself was my hair. I has  always thick , naturaly curly when long. Inlet iybgrow out very long onlybtook about 6 months it grows fast, was supernthicknand  always and curly. I had a pick of it at that time. At this time I was on 20 mg of Topmax then I went to 50 a few weeks later 100 2× daily but tooknonce a day.  My hair was super thin within a month when I posted a new pic on Facebook everyone asked what the hell I did to me hair. Then the Dr put me on 200 2× daily but again only once daily always at night. I take for sever migraines. I would rather suffer and have to go get shots at er then lose my hair. I also take nurotin forfibromyalgia And started it two years ago.  She increased it the same time other Dr did the Topomax. Started a all fresh juice diet to cleanse My body of toxins and help it get what it needs. 30 days will help my body heal get on the right track and someday I hope to get off some of these meds. I don't know any other alternatives.

  • Anonymous
    Jennifer
    Mar. 31, 2014
    I want to loose weight but not like this if I'm going to loose my hair why am. I loosing my hair so much and what can I do to repair my hair and get it back to bing thick and full againg??? See I take topax because I'm bipolar so I lost weight with it and my hair too!!!:( I need help .
    • jennifer b
      Apr. 08, 2014

      I just posted on site should have replied here. On yours but you can red it there.

       

      Jennifer B 

       

      Hair Loser Too

  • val61069
    Feb. 02, 2014

    I TOO WAS ON TOPAMAX AND HAD REALLY HEALTHY HAIR..AND IT ALL THINNED AND BROKE OFF,BUT I DISCOVERED HOW TO STOP IT FINALLY..NOW I LOSE A STRAND OR TWO INSTEAD OF A HANDFUL..I TAKE 1000 MCGS OF BIOTIN AND ONE SELENIUM 200 MG. A DAY ..TOGETHER AND IT HAS STALLED/STOPPED MY HAIR LOSS...THANK GOD....BEFORE I TOOK IT I COULD RUN MY HAND THROUGH MY HAIR AND...

    RHMLucky777

    Read More

    I TOO WAS ON TOPAMAX AND HAD REALLY HEALTHY HAIR..AND IT ALL THINNED AND BROKE OFF,BUT I DISCOVERED HOW TO STOP IT FINALLY..NOW I LOSE A STRAND OR TWO INSTEAD OF A HANDFUL..I TAKE 1000 MCGS OF BIOTIN AND ONE SELENIUM 200 MG. A DAY ..TOGETHER AND IT HAS STALLED/STOPPED MY HAIR LOSS...THANK GOD....BEFORE I TOOK IT I COULD RUN MY HAND THROUGH MY HAIR AND HAVE A HAND FULL OF STRANDS..BUT NOT NOW..GOOD LUCK ..TO YOU..IT REALLY WORKS

    • jennifer b
      Apr. 08, 2014

      I just had looked up same thing. I had thick thick long curly hair my whole life. Been in 25 mgs topmax 2 year then 50 for several weeks then 100 a few months then 200 day. Its been a year now. Also nurotin for two years first 300 3 times a day but I couldn't handle it I only took bone. Its for fibromyalgia I didn't tell the Dr I decreased it. It was pain clinic...

      RHMLucky777

      Read More

      I just had looked up same thing. I had thick thick long curly hair my whole life. Been in 25 mgs topmax 2 year then 50 for several weeks then 100 a few months then 200 day. Its been a year now. Also nurotin for two years first 300 3 times a day but I couldn't handle it I only took bone. Its for fibromyalgia I didn't tell the Dr I decreased it. It was pain clinic I would lose benefits. they increased it to 600 then 800. I first thought it was when I thinned my hair like every summer because its to thick. Thought I did something wrong. But never came back. Keep falling out. I asked pain clinic to stop nurotin they said nothing else will help so she took back to 300 mg I long take twice a day. I need to find something else for migraines. I don't want to go to hospital for shots three times a week. This hospital is slow and doesn't give shots that help. toradol , hydroxyzine it doesn't work any more. My hair on top was so thick I could wear hats now so thin they are two big. This all happens in 6 months. Right around increase of 200 mg of topmax and nurotin. 

    • Anonymous
      kyQueen
      Apr. 27, 2014

      has any of your hair regrown since beginning the 1000 mcg biotin and 200 mg selenium?  I am on neurontin and lost 1/3 my hair within 2 months last year.  it has continued to thin, feels like cotton, not hair.  I have been taking biotin, but obiously not enough.

    • nomoreblonde
      Jul. 25, 2014

      Hi there everyone.  This is my first time posting on this webite (or probably any other!)  I see the stories for hair loss/thinning date back to 2007.  I was on Topamax to help with "mood disorder" and help me sleep.  I took it for maybe 2 years or so, but felt it was safe to just stop, as I did look up the side effects.  My hair was...

      RHMLucky777

      Read More

      Hi there everyone.  This is my first time posting on this webite (or probably any other!)  I see the stories for hair loss/thinning date back to 2007.  I was on Topamax to help with "mood disorder" and help me sleep.  I took it for maybe 2 years or so, but felt it was safe to just stop, as I did look up the side effects.  My hair was cut short because of color damage over a period of about 13 months, so I figured it may have been from the blonde-coloring products at the salon since it was breaking so often.  I recently went to 3 doctors: PCP, psychiatrist, and dermatologist.  The PCP thought it could be my thyroid; it is normal.  The psychiatrist (he is new to me) said "stress" (which I have have much in the last 2 months, along with suffering from extreme anxiety) might cause the hair loss.  The dermatologist said it is a Vitamin D3 deficiency and  recommended 5,000 mcg, along with 5,000 mcg of biotin and said it would take about 6 months.  It still seems thinning (my hair is very short because of all of the previos breakage from being blonde, no bleach or ammonia), but I am grateful to all of you who have posted your stories here.  I know I am not "crazy" now and am also very vain about my hair and do have a wig - but it hurts my head and it is hot in the summer.  I will look up selenium as well, since it can't hurt to take extra supplements.  God bless all of you and hope that the women from older posts have had good luck in having more/better hair.


    • BlueA
      Jul. 27, 2014
      Did you have to stop the topamax or did you continue along with the vitamins??
    • cindylouise
      Jul. 29, 2014

      For the Selenium, do you mean 200mcg or 200 mg.  My bottle dosage says one serving 200 mcg

  • Kathy
    Jun. 20, 2011

    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....

    RHMLucky777

    Read More

    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

    • J
      J
      Sep. 28, 2011

      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...

      RHMLucky777

      Read More

      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

  • learnedmylesson
    Oct. 01, 2010

    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
      Dec. 10, 2010

      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...

      RHMLucky777

      Read More

      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
      Amy
      Jan. 14, 2011

      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...

      RHMLucky777

      Read More

      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.

  • Anonymous
    Anonymous
    Jun. 05, 2010

    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...

    RHMLucky777

    Read More

    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.

     

  • Anonymous
    Balding Topomax
    Sep. 03, 2009

    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....

    RHMLucky777

    Read More

    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.

    • tink660
      Aug. 20, 2014
      I have taken topamax or topirmate for migrains about a year and I use to have beautiful thick hair. Now my hair is thin and dry... I'm taking biotin 10,000 MCG a day and hope to see results but I keep reading that users of this drug have been off it for a year and are still loosing their hair. I'm off that drug now and I'm so glad that a stylist told me I was...
      RHMLucky777
      Read More
      I have taken topamax or topirmate for migrains about a year and I use to have beautiful thick hair. Now my hair is thin and dry... I'm taking biotin 10,000 MCG a day and hope to see results but I keep reading that users of this drug have been off it for a year and are still loosing their hair. I'm off that drug now and I'm so glad that a stylist told me I was loosing my hair and that it could be due to a prescription or I would still be on it. I wish my doc would have told me that me loosing my hair was a side effect to this drug and I would have never taken it! I hope you all recover from your hair loss cause I'm devastated that I've lost so much hair! When you take biotin please drink lots of water with it! Good luck!
  • Anonymous
    Debbie
    Jan. 08, 2008

    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?

     

     

    • Anonymous
      Julie
      Jan. 25, 2008
      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...
      RHMLucky777
      Read More
      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....
    • Anonymous
      Andrea M
      Feb. 03, 2008

      Julie,

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

       

      Andrea

    • Anonymous
      Anonymous
      May. 04, 2008

      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
      Anonymous
      Jul. 14, 2008

      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...

      RHMLucky777

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      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.

    • Anonymous
      Anonymous
      Jul. 13, 2008

      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...

      RHMLucky777

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      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
      Natalie
      Jul. 16, 2008

      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...

      RHMLucky777

      Read More

      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...

    • Anonymous
      Cindy
      Aug. 18, 2008

      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....

      RHMLucky777

      Read More

      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
      Aug. 19, 2008

      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...

      RHMLucky777

      Read More

      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.

    • Anonymous
      kellylapana
      Oct. 05, 2008

      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?

      kl

    • Anonymous
      scared mom
      Oct. 14, 2008

      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!! 

       

       

    • Anonymous
      s. allison
      Nov. 07, 2008

      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...

      RHMLucky777

      Read More

      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
      Anonymous
      Feb. 02, 2009

      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...

      RHMLucky777

      Read More

      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.

    • Anonymous
      Dianna
      Oct. 19, 2009

      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...

      RHMLucky777

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      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
      Anonymous
      Oct. 26, 2009

      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...

      RHMLucky777

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      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!

    • Anonymous
      ali
      Oct. 26, 2009

      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
      May. 02, 2010

      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...

      RHMLucky777

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      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
      Oct. 01, 2010

      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...

      RHMLucky777

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      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
      Oct. 01, 2010

      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,...

      RHMLucky777

      Read More

      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
      Oct. 02, 2010

      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...

      RHMLucky777

      Read More

      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

  • Anonymous
    Carol
    Dec. 17, 2007

    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...

    RHMLucky777

    Read More

    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
      Dec. 24, 2007

      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...

      RHMLucky777

      Read More

      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.

    • Anonymous
      Stevie44875
      Oct. 25, 2010

      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...

      RHMLucky777

      Read More

      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
      Oct. 26, 2010

      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...

      RHMLucky777

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      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----

  • shrinkgirl
    Oct. 03, 2007

    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...

    RHMLucky777

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    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

  • Anonymous
    Anonymous
    Oct. 02, 2007

    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...

    RHMLucky777

    Read More

    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
      Sep. 28, 2010

      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...

      RHMLucky777

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      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
      Sep. 29, 2010

      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...

      RHMLucky777

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      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
      Sep. 29, 2010

      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...

      RHMLucky777

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      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
      Sep. 29, 2010

      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...

      RHMLucky777

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      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
      Sep. 29, 2010

      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...

      RHMLucky777

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      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.......

  • Anonymous
    Anonymous
    Sep. 30, 2007
    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...
    RHMLucky777
    Read More
    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
      Anonymous
      Oct. 02, 2007

      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...

      RHMLucky777

      Read More

      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!!

    • Anonymous
      irie
      May. 25, 2009

      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...

      RHMLucky777

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      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

    • Anonymous
      babycham
      Aug. 01, 2009

      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...

      RHMLucky777

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      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!

    • Anonymous
      distressed
      Oct. 26, 2009

      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...

      RHMLucky777

      Read More

      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
      Anonymous
      Jan. 22, 2010

      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....

      RHMLucky777

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      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.

    • Anonymous
      realistic
      Jan. 22, 2010

      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...

      RHMLucky777

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      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
      Jan. 22, 2010
      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...
      RHMLucky777
      Read More
      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
      Anonymous
      Jan. 22, 2010

      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
      Jan. 22, 2010

      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...

      RHMLucky777

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      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
      Anonymous
      Jan. 23, 2010

      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....

      RHMLucky777

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      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
      Jan. 23, 2010

      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...

      RHMLucky777

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      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
      Anonymous
      Jan. 25, 2010

      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...

      RHMLucky777

      Read More

      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.