Hair loss and Topamax

[QusieSue]

I have been prescribed Wellbutrin for depression and Topamax as a mood stabilizer.  The combination worked very well for me and the bonus was that I lost weight.  However, I also lost hair.  I was wondering if anyone else experienced the same problem.

[sky74]

i have been on topamax for about 10 months. i have been on it for headaches, it has worked great.i have lost 45lbs,a great plus ,but lately my hair is falling out bad! im not sure what to do .i had a dr. apt. last week and had to cancel.i have to make a new apt.i have lost alote of hair its scary.iv been putting the hair thats left in my brush in a baggy to show the dr.how much iv lost since 8/22.i wish you luck!

[kobemel]

Considering askin Doc for Topamax, mainly for migraines/anxiety.  I am currently on Lexapro 10 mg...does anybody think this would be too much?  I don't want to feel oversedated...the Lex is mainly for anxiety as it is a "lowdose", so I would imagine he could d/c this and replace with Topamax. Any information from anybody would greatly help.  Thanks!

[sky74]

i had very thick hair .it grew very fast .in the last 6 years i have donated 4 times to the locks of love .in june i donated again 12" @the relay for life . my hair is now just under shoulder lenght. since aug, 22. i have filled 3/4 of a gallon baggy up of hair from just my brush, not what just falls out , and what falls out in the shower. every person is diffrent though, good luck! i just hope the hair loss stops soon .

[Anneeee]

I stopped Topo over a year ago because of hair loss.  It didnt stop.  I am so sad that I was so stupid to take topo for weightloss and now suffer with my hair falling out.  I have always been known for my serious thick long hair. Now its just a mess.   I think the topo messed with my adrenal system.

[sky74]

How long did you take topamax,and how long did you take it after your hair started falling out? thanx

[Anneeee]

I almost hate to type the words out of fear of breaking the spell, but the eve primrose oil seems to be working.  I see less hair in the brush everyday.


If this continues to get better, i will be thrilled!!

[missyhair]

I have been a hairstylist for 24 years. One thing that I have ALWAYS noticed when my customers loss a significant amount of weight (25lbs or more) they have some hair loss. When you drastically cut the calorie intake you also alter the nutrients and your body goes in survival mode and the essential organs will get the nutrients and the others (hair, skin, nails) will get the left over. That is why you should really talk to your doctor or pharmacist about a good supplement

[Chopa's Girl]

I have been on 400mg twice a day of topamax for at least a year or year and a half. I have lost 165 pounds (in about 2 years).  It killed my appetite and I barely ate anything until just recently.    However, over the past few months I have noticed my hair falling out excessively throughout the day and coming out in big clumps in the shower.  It is getting increasingly worse. The past few days my scalp or perhaps my hair follicles have started hurting too. I used to have extremely thick, healthy hair. People are always picking hairs of my clothes and my boyfriend told me last night that it is getting visible. My hair is everywhere, on all my clothes, all over the house... but not on my head. Great. I am  getting ready to go off the topamax especially now that I have just learned that this is a side effect.  I didn't know.  Had I had known would I have gone off it?  I don't know...  I had been fat all my life and it was so exciting to watch the pounds drop off so fast and change sizes so quickly.  But now I am seriously going bald at age 35 and I am really freaking out.  It isn't worth it anymore to be thin.  I want my hair back.  I was a happy fat person.  I am a miserable size 12 now.  I am so scared it won't grow back and I am so broke I would never be able to afford a wig.  Can you imagine... wearing a wig at my age?  All because I decided to lose weight?  And my doctor keeps telling me my hair is falling out because of stress.  I am furious with him.  He didn't even suggest that I take vitamins while I was losing the weight.  I also don't enjoy all the loose skin that will never bounce back... Weight loss isn't always worth it, especially when you take a pill to do it.  I found out the hard way.

[Flash_1]

I went to the doc today she put me on topamax for migraines and dizziness, I am so afraid to even take this... I see that some of you have had a hair loss... Is that because you lost so much weight? or does this stuff just make your hair fall out? I know that a sudden big weight loss will cause your hair to all out.. its a nutrition thing. but does this pill its self make your hair fall out? If I take great vitamins and drink ensure, or something will I not lose my hair? I have had the migraines for years... I hate them but I don't want to lose my hair... If I did lose weight I could only maybe lose 20 lbs tops... i'm 5 foot 9 and in a size 10 now... I just turned 46 last week. 15 or 20 lbs might look really nice, but anymore would be too much and I mostly don't want to lose my hair. So, I will not start my pills tonight until I hear why the hair loss is happening... if its diet I'll be careful to get what I need in nutrition... but if its just something that the pills make your hair fall out of your head I'll never take this stuff... somebody write to me OK?

[Flash_1]

Ps also I see that the last one was on 400mg 2 times a day. I will only get up to 100mg ....50mg/ 2 times a day... maybe that will make a difference in the hair loss? do you think. Please write back I really need to know. I'm really not going to take this till I find out more.  Thanks

[katwill]

Hi, I am on 50 mgs of Topamax twice a day for migraines. (Just recently switched from 100 mg once a day, hopefully to get better migrine control, as my headaches had returned.) Anyways, I have been on it since July and just recently noticed the hair loss...I don't think it was happening when I first started taking it. I am thinking it probably does have a lot to do with losing weight and eating a LOT less than I used to (I have lost about 20 pounds) and not taking vitamins, etc. I have a friend who had gastric bypass surgery, and she had some hair loss afterwards...she said she increased her protein intake, which helped quite alot...however, with topamax, you need to balance protein intake with LOTS of water to prevent kidney stones, so keep this in mind! I am adding protein by adding a protein powder/plain yogurt/soymilk shake (it tastes terrible!) :) I am also restarting the multivitamin I used to take and taking biotin, which supports hair and skin health. Someone on this board mentioned evening of primrose (thank you!), so I am now going to add that as well. Anyways, hopefully something will help because I have thin hair to begin with, and I need all that I have. I don't think I am going to comb it out while it is wet anymore, because it really freaks me out.

[sky74]

I have now been on topamax for 1year and 8 months .It has helped so much for my migrains .It has hepled ,but the hair loss is still realy bad ! The dematologist said eat more protein, I have and that has not helped.I take Biotin and zinc every day .I have tried different shampoos . good luck! to any one on topamax

[DawnnRai]

Well, I've been on Biotin since I've started taking Topamax the second time, and most of the time I took it the first time.... the first time I was taking 100mg 2x daily, and had the rash side effect and had to come off cold turkey with the help of ativan they gave me and a no driving restriction for 4 day.  I noticed a little hair loss the first time I was taking it, and thought/hoped I was being paranoid... it stopped when I stopped the topamax.. My doc wanted me to go on Nuerotin, and I wanted to retry topamax, as I was afraid to go on Neurotin, as it is a nasty drug!  So... no side affects this time as I'm taking it 50mg 2X daily...except the hair loss... now my hair is then, see through hair follicles, a buch of hair in my brushes...and my hair was ALWAYS thick...  always always thick :(  Now I just want off...  i want off of everything and I'll deal with the seizures unmedicated... to hell with all of the side effects... I want my hair back :(

[sky74]

[sky74]

I'm starting to read up on alote more people with hair loss thats on topamax!
Please share !

[tray30]

I've been on Topamax for about a year now at 75mg x 2 day i can put up with most of the side effects but the last few weeks i've been getting hair loss. i did not know this was one of the side effects of Topamax and the only way i found out was by going on the web , i think we should get told more about this side effect of topamax it's not nice seeing your hair washing away every time you want to wash your hair.
I've started to take a multivitamin  and omega3 oil to see if this helps  
i also read somewhere on another fourm "can't find it again" that selenium based shampoo helps so i might try that also...
i have 5 week before i see my doc so before then i giveing all these things ago  

[Newbie917]

I've been on Topamax for only three days.  Do you think that it would be dangerous to start taking evening of primrose or a multivitamin to try and decrease the chances of hair loss?  I wouldn't think that this would be a problem but you just never know.  Thanks.  Newbie.

[eladbed]

This is interesting.  I have been on Topamax well over a year 100mg daily as maintenance five years after gastric bypass.  I had put on 25 pounds, taken it off and the topamax keeps it off just fine.  I have incredibly thick hair for a blonde, and lost handfuls after surgery but it grew back with good nutrition.  Recently I notice my hair is almost gone - lifeless as well as thin.  The doctors think its iron deficiency, my hairdresser has me on B vitamins, and now I read all this and its the drug - Oh how I hate those side effects:>(.  Now I have to find out if all the suggestions coupled with the iron will help or if I need to quit the Topamax and quit eating.  And that may not even return me to my previous condition.  And it probably caused all my troubles with kidney stones????

[KinedysMAMA]

I just started Topamax last week for migranes...I never knew about the hair loss and was not told about it...will def be watching out for that but my doctor did tell me to take vitamins regularly...b/c of the weightloss...so I bet that is what is doing it ... anyone on here lost hair but not weight?....im going to take my vitamins now...thanks for the info

[sky74]

I went to the Dr. today he said to take prenatal vitamins .vs. multi-vitamin.

[Bamagirl8888]

I have been on Topamax since May 2006, had weight loss of about close to 30 pounds and have had hair loss now.  I to believe it to be the Topamax.  I have lost weight before and never lost my hair like I am losing it now.  I wasn't on the Topamax before, now I am, so all I can contribute my hair loss to is the Topamax.  I can't believe it, I have been through all the medicines out there and this is the only medicine that I have found that has really kept my migraines down to a minimum.  But I'd rather keep what little hair I have left than be bald.  I just can't believe I finally found something that works on my migraines so well and has such a bad bad side effect.  But like yall my hair is coming out in bundles going down the drain and in my hair brush after I wash my hair.  It's a frightening sight!  Good luck to all!

[sky74]

Seen Dr. again yesterday  ,he now added selenium after blood work.I now take prenatal vitamins, biotin , zinc & selenium  to try and help stop the hair loss.Good luck!

[renee999]

I have been on Topamax for about 10 months (100mg). I have the same symptoms as everyone else that has posted on this website and every other website. My hair has been falling out in huge amounts for probably about 6-8 months. I have been to the doctor, had bloodwork done which all came back negative. I asked him if it could be the Topamax and he said no.I lost 60 pounds in the first 6 months of taking the medication and like every one else was so excited to see it happening. I also like many people did before starting Topamax HAD very thick  hair. It is very frightning to see your hair fall out in huge amounts like this. I read what one lady posted above...she was a happy fat person... I sometimes feel the same way. This side effect definatly outweighs any good to come of this medication. If you are thinking about taking Topamax or considering stopping the medication...I strongly urge you to keep reading....what is on this website and every other website about Topamax and hair loss.

[christoph1129]

I have tried topamax several times for weight loss.  the first time the dr. had me upping my dose every 3 days.  from 25-50-75-100.  he also had me on a vitamin regimen.  (zinc selenium alpha lipoic acid, vitamin e, etc).  i immediately noticed my hair falling out from a dose even as low as 25 mg.  i recently tried taking it again im pretty desperate to lose weight and cannot get adderall (adderrall) from my dr.  i tried increasing my dose more slowly 25 mg/week.  the first time i was taking it all at once, the 2nd time i started 25 mg for 7 days, then 50 mg for 7 days then 50 mg pm and 25 mg am for 7 days.  i was noticing more and more hair loss, and just a little weight loss.  I called my pharmacist who said that hair loss isn't really common with topamax and should go away in a few weeks when my body get used to it.  i just couldnt lose anymore, i had extremely thick hair and now i can see my scalp which i hate.  i use nioxin which helps grow hair (shampoo, conditioner, scalp treatment, and follicle booster) and just continued to lose it.  i decided to once again stop taking the topamax maybe if i needed it for migraines it'd be a different story but just choosing to take it to lose weight at the cost of my hair isn't worth it

[susan0711]

yeah it's true topamax does help with migraines. i've had migraines since i was a little girl. i mean terrible migraines. other drugs has worked as well. the thing with topamax it does help subside the migraines more. the weight loss will be completely unseen. now when i was taking it about two years ago my weight was 109lbs but, im only 5ft. after taking it for 1month my weight dropped down to 96lbs and all the hair in the back of my head was completely gone. yuck so therefore i looked like a complete anorexic crackedhead or something. although it did help with the headaches. so if that's what u want to look like then that may be the drug for u. i feel that this drug should be taken more serious. and the fact that anorexia in this country is the display of beauty in america. topamax is in my opinion changes the body not for the good but, for the bad!

[katemn]

I'm glad I found this Forum!  Despite not having any heart issues .. I have been on a heart medication .. Corgard .. a beta blocker for years for my migraines without complete success.  40 to 60 mg am and pm.  So 10/02 when my neurologist added Topamax it was fantastic .. the first real help I'd ever had with my migraines.  100 mg in the pm and 50 to 75 mg in the am .. BUT I had noticed over these years a change in my hair .. I kept attributing it to our hard water .. getting older .. more grey in my hair.  But the last couple of weeks it just hit me .. ME .. the envy of nearly all women with my gorgeous head of hair .. my heavens .. I could actually see my scalp in the front!  Me .. who could never even feel the temperature of the shampoo water for several minutes because of the thickness of the hair!  I think I was in denial .. NO MORE!   I am going to compose a fax to my neurologist tonight requesting a new treatment plan  since it takes several months to get into her.  There MUST be some other treatment I can try without losing all my hair .. someone else mentioned Zonegran .. I am going to mention that to her and see how she reacts.  

[Jenn1977]

I took topomax (topamax) 50 mg twice a day for over 4 months and then my hair started falling out by the handfulls in the shower.  (I was taking it for migraine treatment)  It did rid me of my horrible migraines but I couldn't stand the hairloss.  SO....... my neurologist put me on Zonegran instead, it's supposed to be the "new topomax (topamax)" with less side effects.  Well, just after 3 weeks of being on that my hairloss came back even faster.  So I went off of everything completely and my migraines returned full strength.  

Well, I talked to the pharmacist and she told me that hairloss is definately a side effect (it was in her paperwork).  So here I am, I am back on Topomax (topamax) but only 25mg twice a day, just started back up yesterday and this morning I had more hair in my hands.  I am going to see how this goes, since it does help my headaches, but I refuse to lose my hair.  I may end up just suffering through headaches for the rest of my life if this doesn't work. :(

Oh and I have to mention that after the first round of topomax (topamax) when my hair started coming out, my hair follicles hurt terribly too!  Just touching my head hurt.  It took my hair almost 2 months to stop falling out before my next try of a different medication (Zonegran).  

[Buchworm]

I too am losing massive amounts of hair.  Can anyone tell me if the hair grows back after stopping the Topamax?

[janetleigh]

Has anyone gone off topomax (topamax) cold turkey? And if so what, if any side effects did you have.  I've been on it for 3 weeks and want to stop it today but my nurse said to go off the way I went on .  Any advice out there?

[KK999]

I was presribed Topamax for the prevention of migraines - started on 25mg, twice a day.  That worked well, but neurologist thought that it should be the standard 100mg per day, so 'upped' the presription.  I lost sense of flavor and my tongue felt like it had been burnt; went back to the 25mg twice daily (which worked just fine as preventative) and taste came back.  Side benefit was losing around 20lbs and keeping it off easily - after taking it about 2 years, had extreme hair breakage and loss, so I quit 'cold turkey' after reading about hair loss on the web.  Hair is finally getting back to where it was before, after treating it very, very kindly i.e. no perms, no heat, etc.  I would never, ever take Topamax again, because I'd rather have my nice hair with the extra 20lbs, which did creep back, by the way.

[janetleigh]

I started Topamax at 25 mg once a day for two weeks.  I noticed a little hair loss at the time.  On the third week I was to up it to 2 a day.  My hair came out so bad that I saved it to show my Dr.  I did quit cold turkey and when I did see the nurse a couple of days ago she did not tell me to go down gradually.  I guess I took a chance by stopping on my own before asking but my hair is thin anyway and no way was I going to keep taking it.  I did lose 7 lbs. in 2 1/2 weeks but I'd rather have my hair.  I've been off for a week now and last time I washed it, there was a lot less of it that came out.  I have no doubt that it was the Topamax!!  And I did not have any problem by stopping it cold turkey.

[sterx3m]

Hello everyone,
I was just prescribed Topamex yesterday and am going to start taking it tonight. 50 mg twice a day (100) mg. I was reading about the weight and hair loss. I am really nervous about taking it. I was prescribed Topamex for mood disorders and depression. I wouldn't mind losing weight, but I don't want to lose hair.  Did anyone lose weight but not hair?

Thanks

[Jenn1977]

Well, my hairloss is back and this morning I know I lost around 40+ hairs from just washing my hair alone.  I am going to drop back down to a lower dose and see what happens.  This is my 2nd attempt on Topamax because it really does extremely well with keeping my migraines away.  I just really can't deal with the headaches.  But honestly, I think I'd rather suffer the headaches than extreme hairloss.  I have such beautiful thick hair (or did) and since having started it the first time, my hair hasn't been the same since. It's so sad.  

I have talked to other women who are taking this drug for migraine prevention and they too are experiencing hairloss and it seems to affect women more than men.  I wonder if it has something to do with our genetic makeup or our hormones or something.  I did call that 1-800 number on the Topamax website and report my issues with them.  The more people who report it, the more they will do something about it.  So everyone, please speak UP!!!!  This is not just your ordinary side effect.  If this is what is happening on the outside,what is going on inside that we can't see!  This is one more powerful drug!!!

I am dropping down to only 25mg twice a day and will be giving it time to see what happens.  In the mean time, I keep trying to treat myself internally with extra vitamins and minerals to try and help my situation along with drinking lots of water.  I am also using baby shampoo on my hair now.  My doctor suggested it stating that since is one of the mildest things out there to use.  

I am so frustrated!!!!!  

[Jenn1977]

Oh and as far as what I am taking to try and help keep the hairloss at bay.  It seemed to help in the beginning.  Some days my hairloss is only around 15 hairs.  Other days it is like today, around 40.  This is a list of what I am taking.

Prenatal Vitamin with Biotin
3,000mg Biotin (extra)
800mg Selenium
500mg Calcium Citrate (extra)
800mg Evening Primrose Oil

And I am eating chicken and fish and eggs like there is no tomorrow!!!!!  

I am really pilled out!!!!!!

[crystal0203]

I just found this posting and I am happy to know that I am not the only one losing all of my hair from Topamax.  I have been on Topamax now for about 8 months at 150 mg once daily for migraine prevention and my hair is falling out by the handfuls.  I have gone to my doctor and she keeps telling me it is not from the Topamax, because it isn't listed anywhere as a side effect.  Anyway it is comforting to know that I am not alone in this.  Thanks for all the tips on the supplements to stop the hair loss.  Has anyone here successfully stopped the hair loss while staying on the topamax and does anyone know if hair loss is a common side effect of the medication?  Thanks in advance for any help!

[Linn428]

I was on Topamax a couple of years ago for weight loss.  I lost about 35 lbs, but,  I too had hair loss - enough to start seeing my scalp in the front which scared me to death.  I realized I didn't want to be thin at any cost!  After stopping to Topamax the hair loss has stopped, but I still see my scalp in the front, so I don't know if it's ever going to be thick like it used to be again.  I'm also pushing 50 yrs old, so I guess I can expect some thinning of the hair. I was tempted to re-try Topamax because my weight has gotten out of control again.  But after reading all these posts, I don't think it's worth it.  I'm just going have to get strong and stick to a good eating plan.  No more drugs!  

[Hereforyou700]

Terrible hair loss! I have been taking a small dosage of Topamax. The insidious hair loss is difficult to notice until it's too late. Take great caution with Topamax unless you don't mind being almost bald.

[migrainetop]

I was on Topamax for 2 months and noticed hair loss towards the end so came off it. Been off for a month and hair loss if worse than ever! Any ideas when it'll stop and if it's going to grow back? Taking supplements, special shampoo, had hair cut to help deal with it but nothing helps!

[jajk9906]

My Neuro put me on Topamax for chronic migraine, when she raised my dose to 150/day my hair started to fall out, as time went on the hair loss was enormous!  After 3 months on the med my Neuro pulled me of due to weight loss and extreme hair loss.  I have been off the med since October 06', my hair is a total mess!  It used to be shiny, thick and easy to manage.  I would describe it now as a bad Joan Jett look (minus the black color).  It is see-thru now!  I can't even wear a pony tail because I can't find one small enough to hold it in since it is less than the circumferance of my finger.  Near the sides of my forehead there are 1" long chunks where the hair has just broke off, after 3 months they haven't grown a centimeter!  My hair is brittle and keeps breaking off despite the frequent trips to my hairdresser for trimming, she can't believe the change!    It takes so much curling and piecing with hairspray to get it to look somewhat like a style...I'm exhausted with the work it takes and I'm becoming consumed with this!  I used to have a good self image, that has greatly decreased.  The thought of going thru the summer like this is a real bummer.  I only wear dark colored shirts right now to try and hide the thinness in the back.  I advise anyone to watch closely to what is going on with your hair on this stuff, if you see any increase in hair loss go off immediately.  My hair continued to fall out for 3 months AFTER I stopped it. That's when the real damage was done.  I wouldn't wish this upon a soul.  But it's very apparent I'm not alone.  In my opinion any Physician who dose not disclose this side effect and how potentially extreme it can be should be liable for negligence. I'm so mad I would like someone to pay for this.  Although I am realistic and know there's really nothing to be done, but hope that in time I will have a decent head of hair again.

Good luck to everyone!  Any Respones would be wonderful!

Jajk9906

[dancingdoll]

I was on Topamax 100mg a day.  Started out slow...25mg, 50mg, etc;  at around 6-7months my hair started coming out alot.  It may have been coming out before, but became really noticable after the 7months.  Just like everyone else, the hair came out in handfuls and the brush was always full each day.  It has thinned so much that my scalp is showing just like everyone else is complaining about.

My neurologist told me that of all the patients that he prescibed it for, only 2 had hair loss which included me.  However, now reading this forum I see it is becoming wide spread.  

I don't know what the drug does to the hair, but its obvious that it kills the hair follicles and deprives it of nutrition leaving it brittle, un-shiny etc;.

I went off of the drug and have gained weight back...I lost 35lbs. but the hair loss did continue for several months there after and it has finally started to slow down.  

Those that are counting their hairs each day must remember that a normal person loses around 100 hairs a day.  So if your now only losing 50 or less, your in good shape.

I have not seen any new growth yet, but since it took 7 months for the hair to start going, I have a gut feeling it will take at least that amount of time to start growing back.

The bad thing is: when we are born, each hair has a lifecycle.  One hair can last for 5yrs and never come back and another can go for 20 yrs. O  nce a hair has come to the end of its life cycle it will never grow back.  This is why when we get older, our hair thins out.

Due to sickness, stress, medication etc.  We sometimes force our hair to speed up their life cycle.  This causes more hair loss then normal and less hair growing back due to the hair dying prematurely.

So, now that we all have lost hair from the Topamax.  I believe that it has killed some of our hair follicles and may never grow back.  Taking vitamins and stuff will help alot so we should all continue doing that.  All the vitamins that have been mentioned are excellent for hair.

Don't let the stupid doctors tell you its stress etc.  It is the drug and like someone else said, the makers of the drug need to know about this more.  Im going to try and write in about my side effects and hopefully with more people, they will take the hair loss side effect more seriously.

Wish you all the best
Pam in Corona, Ca

[sky74]

I have been on Topamax since Dec 2005 .I have lost alote of hair, a gallon and 1/2 baggy I have saved and showed the Drs. I finaly stopped saveing the hair.The drs. dont think its the med but cant seem to find the reason of the hair loss.They just have me using alote of vitamins now.Tried extra protien that didn't work.my head still gets a itchy, tingly,feel to it and the hai falls out .I have no new hair is growing but what ihave left is.My scalp is start to show.

[ctdoc]

I have been on topamax for migraine 400mg/day since early 2003 and I have gradually and now more recently--the last year--have had severe hair loss/dull brittle hair and scalp showing through. It has bee a great med for my severe headache condtion but I am going to think of coming off of it.to get healthy hair back.
I wouldn't opt for the frequent headaches though.
a doctor in ct

[kit35]

Now I'm beginning to wonder...

I've been on topamax for approx.10 months working my way up to 150mg. My hair has been slowly getting dryer, thinner and more brittle during this time. But this past month I've been fighting back the tears as I pull clumps of hair from my head. Yes, it helped the migraines, but I swear it's drained blood from my brain in order to do that - I can't carry a decent conversation anymore!

Back to the hair loss. Has anyone had any pre and post thyroid labs done before taking topamax?  

And if hair loss is occurring in so many women without this listed as a side effect, isn't the manufacturer held liable?! Word out ladies!

[KKelly]

I've been taking Topamax for only two weeks now.  Only taking 25 mg once a day so far.  It was prescribed for migraines as well as mood stabilizer.

Other than the memory loss, I feel great.  The headaches are already mostly gone.  But I am scared to death of causing long term damage with this drug - whether it is permanent hair loss (I'm 35) or damaging my memory/brain forever.

Anyone have any experience with the medicine at this low a dose?  I hate to go off of it, but with all the warning signs, it is hard to keep taking it.

By the way,  haven't noticed hair loss yet, but maybe it does feel thinner.  

[holeypurlgirl]

I have been taking 100 mg for 3 weeks now and have not noticed any side effects yet except tingling in my feet and face. I have had any hair loss nor weight loss. But on the weight loss topic, the way my doc explained it to me was "a loss of apetite" and I am a recovering anorexic. So I already don't have an apetite. I eat because my daily schedule says its time to eat, not because my body says "you're hungry, go eat". I really did not expect to lose weight on this med. But I will say it has been a god send for my migraines. I haven't had any episodes for 2 weeks, and it does not make me drowsy :)

[beccaj]

hello i was on topamax for around 7 months. 200mg daily then decreased and eventually off in march08. i went off due to a kidney stone which they think was linked with topamax. The more a decreased my dose the more hair loss i noticed!! it sucks. i am only 27 years old always had long thick hair. i was so depressed i cut it short myself and then ran to the hair salon for help. it still sheds alot. i take multivitamin and biotin. i try not to worry and more but when there is hair all over, it is very depressing. HELP will it eventually stop?

[skinnygurl]

Anyone that is or has a history of being anorexic is not even supposed to be on this drug( as per the literature).As for the hairloss. I am losing TONS myself.I don't know what to do because I unlike most do NOT want to go of this med. I'd rather be skinny, migraine, free  and bald than fat and have headaches. But my neuro says no way and wants to titrate me off and put me on nuroytyptiline which will make me a cow! I just can't  believe that no one knows what chemically is going on with this med to make people lose their hair? There must be a way to block or reverse it! I do notice that I lose less in the shower when I don't run my hands through my hair and when I rinse with the coldest water I can stand to close up the folicles. I am taking every supplement under the sun. I refuse to give up. I guess I may have to go to the mall and buy some hair.

[teachpsy]

I have been on topamax about six months and am up to 100 mgs twice a day for migraines. Was told of the possibility of weight loss (which I hoped for), and the tingling in the hands (which i was told to eat a banana for), but was NEVER told about hair loss. Over the last few weeks, I had several brush fulls of hair, and several handfulls of hair, when I would normally never have hair in my hands after shampooing or combing or brushing. I too have thick, great hair. Or, used to. It seems to be changing rapidly. The headaches are better, but not gone. I'm thinking it's not for me, and I'm really not willing to give up my hair.

[ditter1234]

I was on topamax 100mgs for about a year.  I am 30. It was a godsend for my migraines, but like many of you I had extreme hair loss.  I am 12 years as a hair stylist and I can promise you your hair loss has NOTHING to do with perms or color...that would be breakage....if you have a root on the strands that fell out that would indicate it is falling out from the inside, not breaking off!!!  Secondly ,I have been off of it for about 6 months and I feel as if all my hair has grew back...yet my migraines have returned.  I called the 1800 number and reported the hair loss...I do think they know about the hair loss but because it works well for migraines...and they make lots of money...why would they admit to it??  I don't trust large companies and politicians!!  It is a shame it makes our hair fall out because it did work wonders on the migraines....good luck everyone..your not alone in suffering from these horrible migraines...if anyone knows of anything that has worked for them please post it..

[Savanah1]

I can't believe I just found this forum.  My mother-in-law suggested I try Topomax (topamax) in 2004.  I started it in Jan 2005 and noticed the hair loss in the summer of 2005.   Everybody told me that my hair was still thick.  My hairdresser even told me that my hair loss was not unusual.  I could run my fingers through it and not lose any.  However, hundreds of hair follicles came out each time I washed and rinsed my hair.  Also I had a strange episode of blurred vision (corneal lesion of unknown cause and diagnosed keratoconus by 2 optometrists and one opthalmologist) that started in March of 2005.    I stopped the Topomax (topamax) on my own in September, 2005.  It took a year for the vision to correct itself, (now my optometrist state that I probably don't have keratoconus!) and just today (3 years after stopping Topomax (topamax)) I noticed that for the first time since 2005 my hair is no longer coming out in the wash!  I never did notice significant weight loss - so I am content to just manage the migraines (hormonal) with pain meds.

[plumeria44]

Sixteen years of pain, I finally found a medication to control my migraines!!! And then my hair starts falling out in the shower and  I have a slight burning / tingly sensation on my scalp.  

I started Topomax (topamax) in April.  Last month I started to notice hair falling out.  Last two weeks I thought, maybe I am allergic to the shampoo (I have been using forever.)  I would love to say it was due to weight loss but no luck there.  It is the medicine - I have not lost any weight.

Not ever considering it until reading the comment above...I have also been on Wellbutrin for about 4 years now to battle depression(which has been under control.) However, now that I read the comment from above I realize that there is a good possibility that I am wearing glasses as a side affect of the medication.  I started to have blurred vision about 4 years ago - the optometrist said it was because I was getting older - ummm.  I am 35!!! and she never asked if I was taking any new medications, so I would have never even thought about it. While I think that it is unlikely that it is the cause - since I have been on it for 4 years, while looking to see what side affects wellbutrin has I noticed that it too can cause hair loss.

I am frustrated, terrified that my hair may not fill back in(I already have very fine curly hair)  I am angry that I didn't consider the possibility of the wellbutrin being an issue with my vision.   But I am also completely disappointed that I found a medicine that worked - I have only had 2 migraines since April and I am not going to be able to stay on it.  Talk about a depressing situation.  I know that I have to come off the medication - so therefore I will be in pain within the next week to a month...about 4-6 days out of the month, until they find something that works...took 16 years this time!

Please tell me my hair will grow back faster than the above comment?  Please tell me it is a sure deal that my hair will grow back and has anyone found an alternative for the medication?  The doctor has started the tapering off - so I am not sure how long it will be before they are able to try something else.  Hopefully, not so long that durning the tapering it will remove the rest of my hair!

[sky74]

I cut back to 150 mg. in late May.My Hair is so thin now I'v been on it since Dec 05 200mg a day.I wish everyone luck I still think drug com. needs to tell about hair loss.

[renee999]

I was on topamax for less than a year (100 mg).
I stopped it myself and had no side effects. I have been off it for 5-6 months and the hair loss has finally stopped. I do see new hair growth...so Ladies..there is hope. I just wonder how long it will take for there to be a noticeable change
What a bad experience!

[TamiJane]

Thank goodness I found this website.  I also thought I was going crazy.  I've been to many doctors and had all kinds of tests for significant hair loss.....all negative except for low iron.  Took handfuls of suppliments.  Nothing helped.  All the doctors were aware that I was on Topamax, 50 mg. twice a day for a year to control migraines. . Conicidentally, the same amount of time that my hair has been falling out.  They just shrugged their shoulders and said it was stress.  Told me to try Celebrex. Now that you can see my scalp on the top, I'll start weening off them immediately.  Wish me luck.  I want my pretty blond hair back and I'll need a new medicine for migraines. Sadly, this one did work. Good luck to everyone else.  I feel your pain.

[Jenn1977]

Well, after my 2nd round of topamax I stopped taking it in May because my hair was falling out worse than the first time.  I am almost on month 5 of no topamax and it hasn't slowed down, if anything, the hair loss has sped up.  I lose clumps in the shower, in my brush and even just combing my hair, strands and strands are coming out.  I know I am losing around 200+ hairs a day now.  My scalp is showing around my forehead and it's coming out more around the sides of my head, I am guessing because of the say I sleep, maybe?!?!  

I do not see it letting up this time.  I will say the texture of my hair has gotten better, not so dry and brittle, but it's falling out by the root and is very aggressively falling out in the mornings.  I just want to sit in the floor and cry!!!

Right now I am not taking any medications to "prevent" migraines, I am just treating them as they occur.  I am taking hair vitamins I have purchased online to supposedly help stop hairloss, but it's still not working.  I am taking prenatals, selenium, biotin, hair essentials (which aren't stopping it from falling out but making what is there healthier looking), and other added vitamins.  Nothing is preventing the hairloss.  My scalp is still rather tender too.  Sometimes it hurts.  But when the hair falls out, that doesn't hurt, just when I lay down my scalp hurts.

5 months off and it's like my hairloss is getting worse and worse as each month goes on.  If I keep this up, in another 5 months, I won't have any hair left.  

I miss my beautiful thick hair.  If anyone is on this drug and wants to keep your hair, I would suggest stopping.  My hairloss stopped 2 months after I stopped taking topamax the first time.  Now after my 2nd dosing of the drug, 5 months after being off, it's worse.  It's not worth it!!!

And btw, hairloss is being noted more prevalent now with this medication.  I guess it all boils down to what is more important to you, no migraines or having hair?!?!?!?!?!?!?!?!

[Bbailey64]

I have been on Topomax (topamax) for 10 months and my hair is is only growing slightly. I have had testing done and of course, every blood test came back fine. My doctor gave me the option of lowering my dosage for neropathy, going off the meds, or sending me to a dermatologist.

I started taking Botin and Zinc last month because my hairdresser noticed no hair growth!

Any suggestion is appreciated.

[neetsiepk]

I have been taking 100mg of topamax twice daily for 2 years and have NEVER had any hair loss (I hope I don't experience it now that I have read these posts).  I didn't lose a bunch of weight either and would have liked to lose 50 lbs.  I don't have an appetite, but I think my metabolism has slowed down.  I know I can't drink beer or cokes anymore, because it tastes horrible.  And the topamax makes me a little dopey at times.  Some people call it "dopamax"

[Eden108]

>sigh<  I just found this site today and I am so depressed.  I have been on Topamax for migraines since January or February. Started at 50 mg/day now up to 150mg/day.  I lost 60lbs initially but have gained about 30 back. I also have some "dopey" or "brainfog" moments but what worries me most is the hair loss.  Clumps and clumps in the shower, every time I brush,  stands all over my clothes, the furniture, draped wherever I go.

[linzlou]

I was prescribe Topamax for migraine headaches and wellbutrin for the depression. I was told it would help me lose weight as well, but I've been on it for maybe a year now and haven't lost a pound. In fact, I've probably gained. So it may work for some, but it did me no good.

[Swayne13]

I, a 29 year old female, was on Topamax once a day (have been on Wellbutrin for 5 years with no hair loss issues), 50mg, for no more than 6 weeks before I noticed I could see my scalp through my hair line.  I couldn't figure out if it had always been that way (I've always had very fine hair) and I was just noticing in a certain light or the coloring, or if something strange had occurred.  I shrugged it off and carried on, but a few days later stumbled upon proof.  I was getting ready to head out for the night's plans, and when I tried to put a small clip in my hair - the very same one I'd worn a week prior - I couldn't collect enough hair to hold it in.  What I could collect, was hair in my hands.  Suddenly, the whole week's worth of hair found headless flashed into my brain.  In my car, in the shower, on my clothes and furniture, and in my brush - lots of it.  And now I couldn't talk myself into thinking it was my imagination, because there it actually was... just sittin' around... being all not-attached-to-my-head.

Cue the pure, whole-hearted panic...

As I frantically inspected with mirrors, I discovered that in fact, at least of third of what used to be on my noggin was gone.  Now, this was unfortunate timing, as there were only a few minutes left before I needed to leave to be somewhere.  So, I grabbed bobby pins and headed out, all the while repeating to myself that it might grow back, it could grow back, this was a very sudden loss which means something other than heredity... (oddly, the idea that I might have some horrible disease was not my main concern).

When I got home, I found this forum and learned that just one measly little month of Topamax had indeed thrust my hair follicles into protest.  So, I went out and bought soy protein powder, along with evening primrose and a special hair skin and nails vitamin and have since been playing the waiting game.  I'm not sure which is worse - that I am trying to watch my hair grow, or that I'm so completely absorbed in trying to watch my hair grow.  I told everyone that hair growth suggestions are welcome, but bald jokes are not.

It has been 6 weeks since.  I immediately stopped the Topamax, and my hair is still falling out.  It's in better shape than it was but still brittle in places.  I've been taking the vitamins, soy protein (ran out of evening primrose oil and think the hair loss may have increased without it so will be buying more), trying to only brush with a large-toothed comb, and even bought topical minoxidil stuff.  It's growing longer for sure, but I feel like there is less and less on my head.  There are days I think it might be growing back in, but then the very next day it's like it has the quantity and texture of a toddler's.  All I have to do is run my fingers through it and hair comes out.  Not as much as what came out that first week, but still way too much to be considered healthy.  I planned to see a doctor but just lost my job and can't afford it.

I think I may have been on it the shortest time of anyone here, but it also seems like I had the fastest hair loss.  Either way, I'm hoping because I was on it for such a short time I'll see results sooner and can report back here in a couple weeks with good news.

[gena444]

OMG!! now I am really freaked out!! I just got prescibed Topamax! for these everyday Migraines and stress... I am 37 and since last year noticed my hair thinning bad and falling out I figured hormones, stress. But now If I take this topamax for the migraines I am sure to go bald.. maybe vitamins I started to take Biotin last month because of the hair loss anyways,,, now I am freaked... what to do????

[hairless91]

This is my second time around using topamax.  I have migraines so bad 3 times a week it is disabling factor in my life.  I cannot live with the pain...  I was on topamax before for several years, and it worked so well controlling the pain I was finally free to live a normal life.  However, I did lose my hair.  I did have to start wearing wigs.  I chose to have fun with it and try different ones.  Hanna Montana gets to do it I said, so why not!  I had several styles and colors that looked great on me.  My husband was supportive and liked the variety...if you know what I mean... ha. ha.  I had one of those moments and wanted to get off the meds and try to see if I could be med free.  I weaned myself off them and was able to be off them for about two and 1/2 years.  The migranes came back!!!  My doctor and I have tried everything, so here I go again I am back on topamax.  I am not looking forward to the hair loss again, but the pain is gone.  My migranes were so bad, I'd end up in the ER.  Maybe we can start a new trend!  I know I will have to live with the side effect.  I'll choose to have fun with it..  I think a short sassy blond wig will be cute!!  Or maybe a red one!  ........

[TamiJane]

Did all your hair come back in the two and a half years you were off the medication?  If so, how long did it take?  Good luck with your migraines.  Short and sassy sounds cute.

[hunnybunny5]

I started taking Topamax in October 2007.  When I first started taking it I got the tingling numbness in my hands and feet and I was very confused alot and very stupid.  I had hair loss but when I stopped taking it my hair started falling out in clumps and every time I run my fingers through it I have a handful of hair.  I went to the emergency room one night with an uncontrolled migraine and the Dr. told me to take magnesium.  I started it a few days later and went off the Topamax cold turkey.  Now I feel so clearheaded and lively.  My days have been wonderful I've been taking the magnesium for 2 1/2 weeks now and I will only get a migraine if I miss a dose.  This stuff has really been a lifesaver.  I haven't done anything about the hair lose yet, can anyone suggest something that has actually worked?

[deedee1221]

Been on Topamx since Feb. 2008 for rapid cycling bipolar II disorder. This is the 'miracle drug' so far for me. Dosage had to be increased and with that, to my dismay, I have been losing my hair. In the last three months I have lost over 60% of my hair and it was fairly thin to begin with. I am at a point where I am extremely upset by this but cannot go off this medication. My moods are stable and that is more important to me. I've tried all other medication to this point (diagnosed years and years ago and followed closely by a great psych). This has been a terrible blow though. I can now see my scalp and...well I just cannot believe my luck, finding a med that works and now this. So I guess it's time to find a wig or something.  Things could be much much worse and I have to keep telling myself that and reminding myself of the day my Dad had to shave his hair when he was going through chemo and then died 3 months later after fighting so hard.  So I'm damned lucky and he'd be proud of me for finding the right attitude. If you can go off it, do, if not, find a way to figure it out.

[deedee1221]

2nd comment

by the by - I'm on 400 mg daily.

[Swayne13]

I don't want to jinx anything, but it seems my hair is growing back in!  It's doing so slowly, of course, but at least it's happening.  I'm still losing a bunch each day, but it's nowhere near as bad.  The only problem is, I'm not taking the Topamax anymore and I wish I were because it really made a difference in my life.

I'm keeping an eye on the growth - I'm taking a soy protein powder supplement with skim milk every day (that also has some vitamins and minerals); 4 hair, skin, and nails vitamins (it only advises 3 but I'm trying to boost rather than just maintain; calcium and vitamin D, and evening primrose oil (still can't figure out what its effect is).  

I'm sending lots of warm wishes of happiness and health to you all!  I admire everyone here for their strength and support of each other.

[Janie416]

I am on Topamax since May, I have NOT experienced signifigant hair loss.  I have very think long hair, and my hair dresser says it is not unusual to lose up to 90 hairs a day.  

I cannot see my scalp and my hair is still thick. In fact, if I go to a new salon, they urge me to cut my hair.  It is half way down my back.

I am on 25mg 2x a day, but there are days I only take 1 pill b/c I cannot tolerate the "tinny" taste.

If it is helping me lose weight, it is a slow process, but my headaches are not so severe now.  

In addition, I have noticed my nails grow faster now.  I am over 50 so this is all new to me.  The only time my nails were great was when I was pregnant and on prenatal vitamins.

So I would suggest most of you cut back on the dosage with your doctor's permission and see how that goes for you.

Good Luck!

[twehner5]

I stumbled on this thread recently.  If anyone is still watching it, I found these hints this a.m. on Real Age.  Maybe this is why I am on Topamax (for migraines) and not losing much weight (except by diet and exercise) or hair.  See if this helps:  http://www.realage.com/ct/tips/7160

[Swayne13]

Ugh.  Bad news - I lost a bunch of hair again.  It turns out the monoxidil stuff I was using is what was keeping hair on my head (I can't believe it would be solely responsible for the new growth).  I stopped using it because I thought it was the vitamins and protein I was taking.  

I'm hoping the new bunch that fell out is just leftover from the Topamax - like, all the hair on my head was affected by it, but once each of those hairs falls out, the new growth will be back to normal.  I think maybe it's missing in different places this time.  This is so frustrating!  I'd go to a doctor but I got laid off and don't have an income nor health insurance.

[lt1012]

Been on Topamax for over 3 1/2 years. Been through 2 episodes of hair loss. Believe me I was more than devistated. I take 200mg 1x per day. That was my starting dose. I too have lost 40lbs and have been able to maintain my weight.

Thanks to my "angel of my hair stylist", she recommended that I use Nioxin #4 Shampoo/Conditioner every other day. I have been using this combo for the past 1 1/2 years, and yes, cut my hair to shoulders lenght to help with all the breakage and to keep my hair looking fuller. I am 45 years old and have always looked younger than my age, and I always prided myself on my hair. I do have thinner hair, but it as always healthy.

Since I began using Nioxin (which you can buy ay Walmart or any beauty salon), my hair has gotten stronger and healthier. After getting it cut, I actually get compliments on my hair, something I haven't had in about 3 years.............. I used to hide my hair under a baseball cap.

I truly hope that this will help.

Laurie

[marjo4]

I have been on Topamax for chronic neuropathy following spinal and other surgery. I've been on it for a couple of years. My doctor only told me that hair loss was a side effect recently just before Christmas. I have only got fluffy wispy hair at the side of my head now. I used to have a lovely head of hair. Its horrible now. I have decided to taper off, starting right now. I cant bear to be on it for one more minute. Trouble is I don't trust any other drug any more either.

[Swayne13]

Well, it's been 5 months since I stopped taking just 25mg of Topamax daily (for only 6 weeks to begin with).  I still don't have my hair back.  It grows in very well on the top of my head, and the lower back of my skull, but there is still like a ring of hair missing - like a no-hair crown.  I feel the only reason I have any hair growing is the monoxidil stuff.  How ridiculous!  At this point I'm wondering if I should start taking the Topamax again, since my hair hasn't gotten better and at least I could lose some weight.  I'm still waiting to consult a doctor (haven't found a job yet) to see what they think I should do.  This has been heart-breaking.

[starlight2010]

I am on topomax (topamax) orig. for weight loss, but I have tourette's and this drug has all but completely stopped all symptoms.  I do not want to get off of the drug. I am on 200 mg p.o. nightly.  I do have hair loss also, but am thinking about living with it.  I was wondering if all of it will fall out?  I noticed last year a post of a woman who used Nioxin # 4 and kept her hair trimmed short had some success, but thought I would ask.  I am going to be required to taper off because of weight loss, but I do not want the tourette's to return.  They are very , well, let's just say, I would live with very thin hair.

[Janie416]

Has anyone noticed changes in their liver enzyme levels?  Mine went up and I had to stop taking TOPAMAX b/c of it.  Now I have headaches again and have to use IMITREX instead.  I never had noticeable hair loss.

[JenniferMS]

I have a kind of complicated situation.  I had a gastric bypass about 13 months ago - so I was already losing hair when I started Topamax back in November.  I have just attributed my hairloss to my weightloss surgery, even though it has gone on much longer than anyone else I've heard of, but after finding this information today, now I'm not so sure.  

Anyone have any idea on how my doctors and I can find out if the Topamax is at fault here?  I'd hate to stop taking it (I'm on it for migraines, 75mg twice a day and it works beautifully) if it's not the culprit, but OTOH, if the med is why my hair is almost completely gone, after being so thick it made hairdressers gape, I'd try something else.

Is there any chance that the hair loss side effect goes away after a while on the med like most side effects?  Or does it stay as long as you take it?  Because if that's the case I only have another month or so before I'm bald....assuming Topamax is causing my hairloss in the first place.  Dang this is confusing!

Oh - and another question... when going off Topamax, do you tend to gain weight?  I have no idea if the Topamax helped me lose or not, since I was already losing, although I'm inclined to think it probably did.  So should I expect to regain any weight it helped me lose if I do end up changing meds?

Thanks!

[dancingdoll]

I am "Dancingdoll", I posted a comment in Feb 2008...it is still in this forum.  This is an update for anyone interested.

It took 7 months of taking Topamax for my hair to start showing massive loss.  I lost half my hair during the months after.

I had a feeling the hair loss was from the medication, so I started researching the web.  I was convinced by then that it was the Topamax and insisted that I be taken off of it.  My neurologist was not convinced, but I was.

Proof that it was indeed the medication, I can happily say that most of the hair has grown back.  With all of you out there that go off the medication and still see hair loss...it will take a few months longer of hair loss before your body re-regulates itself from the Topamax.  As a rule, when ever we experience something in life like stress, bad dieting, etc...it takes about 2-4 months later to show up in the hair. That's why a lot of people don't realize the connection, due to the time delay.

I can't say that all of my hair grew back, as I stated in my first comment in Feb,  we forced the hairs to end their life cycles prematurely, so not all hairs will return.  They are dead and gone.  But, there is no massive hair loss in my brush, shower, etc.  It has stopped.  My hair dresser noticed a lot of new hair growth and now my hair seems fine.

I can say to those that are in doubt.  The Topamax is the cause of your hair loss.  Again, my hair stopped shedding a few months after going off the medication.  

Yes, I had lost weight, but I also was dieting during that time.  I have gained back weight, but I would rather be over weight and try to lose it the old fashion way then to be bald.  

I was taking the Topamax for migraines not weight loss.  Im back on Inderal for maintenance  and Imitrix when it happens.  But, at least I have most of my hair back.  I am 52yrs. old.

I hope this update helps those that are unsure.  I don't believe vitamins will completely stop the hair loss while on Topamax,  And I don't believe the hair loss will eventually stop while your still on the medication.  I believe it does something to the blood circulation in our scalp (thus the reason for tingling, burning sensations etc).  I think it cuts off the blood flow to help nourish the hair follicle, thus killing the follicle.

Vitamins etc, is not going to restore the blood flow.  But, they can't hurt.

I hope this helps others reading this to make a decision.  If those that are severely ill without the Topamax, then a wig may be the only option to have quality of life.  It's a hard decision at times.

Pam in Corona, Ca

[lhundley]

I'm 41 yrs old and have been dealing with menstrual migraines for several years.  It wasn't until Sept 08 that I sought treatment for them by a neurologists.  The neuro put me on Topamax 50 mg once daily.  It seemed to work but about 5mths into it I had some breakthrough headaches so she increased the dosage to 100 mg a day.  Nearly 3 mths went by and I had no headache, it was great.  HOWEVER, my hair started falling out, actually breaking off, and it was significant.  I've always had long THICK hair and it became very thin and then I found a bald spot on the back of my head.  I am also having some blurry vision which I think too might be linked to this drug.  The neuro seemed hesitant to believe that my hair loss is due to Topamax but has decreased my dosage and I've been off it for 9 days.  Although the hair loss has decreased it has not completely stopped and soon I will not be able to hide my bald spots.  I hope it stops soon and more importantly I hope my vision returns to normal.  I've seen and eye dr and have a f/u in a few weeks.

I urge anyone thinking about trying this medication to consider the sight affects, they are horrible!  I guess I was having chest pain, vision loss and hair loss for a while but didn't put them all together until the hair loss became so significant it left me with bald spots.

Thanks for letting me share.  I'm very scared.
Lisa

[mutter2]

I have been on Topamax 50mg once daily for the past 6 years.My hair started falling out 2 years ago.I also have blurred vision and  terrible short memory loss!!!The migraines stay away but I have not really lost weight through all these years.Went to a specialist yesterday,had more bloodtests and he googled Topamax!What a shock I got when he said it could be the Topamax!I am also really mad!!Can I just stop taking Topa?He strongly advised against it and told me to start taking 25mg once daily but I want to go cold turkey!Any advice???

Mutter2

[Janie416]

I stopped taking Topomax (topamax) cold turkey when my doctor told me my liver enzymes were elevated.  I had no adverse reaction.  However, I was only on it for 3-4 months.  And I did not have hiar loss either.

[mutter2]

Thank you for your comment.Never knew that one's liver enzymes can be elevated as well!All the more reason to stop taking Topamax!I skipped for 2 days and my eyesight was better but took one again this morning...too afraid of getting migraines!Will take one every 3rd day for a while and then see...

[tobbytoll]

I really wish someone would have told me about this hair loss in the begining.  I've been on topamax for a year and 8 months, and it has helped with my migraines AMAZINGLY!!  But the side affects in the begining were horrible, and I haven't lost any weight from it. But now i've started having hair loss, and I have REALLY thick hair.  and its just falling out everywhere.  my clothes stay covered in hair.  I'm didn't know that topamax would cause this until I came across this discussion.  I've also expericened premature greying and i'm only 20, does topamax cause that TOO??  I have to see my doctor soon and i'll talk to him about all of this because I really hate to go off of the topamax.  It really was a life saver, I was having severe every single day.  So hopefully there is a way to stop the hair loss.  

[realestategoddess]

Does anyone know if taking 5000 mg of Biotin and  5000 to 10000 mcg of B12 as suggested by some web sites help stop the hair loss?

[kimhrlss]

I have lost so much hair... :( I started taking Topomax (topamax) 150 mg, Aug 2008 and just loved it.(headaches gone)  It worked great. I never dreamed my hair would fall out. I've been off  it 3 days. (colde turkey) I just want my hair back.  Kim

[mutter2]

Just hang in there.I stopped Topa cold turkey more than a month ago and the hair loss decreased.I was on it for 6 years and my migraines have not returned yet.

[resinite]

Okay, I am following mutter2

Can't take hair loss anymore. Been on T-pills for 3 years. Did decrease migraines dramatically. Have tried to quit but migraines return. This is going to be difficult. But I swear this drug is making me sick in other ways  (just feel old). I am not even 30 yet. My hair is so thin that I can barely put it in a ponytail and my eyelashes are falling out too. This is BS. I am taking my life back.

[mutter2]

You go girl!!My hairloss has stopped, my memory is returning and the fussy feeling in my head is gone....so are the migraines.I have lots of re-growth but it will still be a while yet to have a thicker ponytail.LOL!

[topamaxsux]

im 22 yrs old and have been on topamax almost a yr.I just now noticed my hair on the crown of my head is getting so thin when i wear my hair dwn I can c my scalp a little! i am sooo scared that its not gonna grow bck? can ne one tell me how long it took to stop falling out and if it grew bck? ive only been off of it like 3 wks ago but is their ne 1 whos gone through this and went off let me know SOMTHING? ANYTHING PLEASE! im scared to even wash it! Im gonna put it in Gods hands but I need some kind of encouragement or comment.

[Oklagirl]

Hi All,  I was on Topamax for almost a year. I am a 27 yr old female with no other health problems.  It worked great and I went from a daily migraine to one migraine a month around my period.  In the last 4 months I have started to notice that I was loosing a TON TON TON of hair, in the shower, in my brush all over the place.  At first I didn't think anything of it, I just thought i was a change in the season.  I  normally have ALOT of hair its really thick and long and my hairdressers always say I have some of the thickest hair they have ever seen.  Well now I am down to almost bald spots.  You can see my scalp in several places and I am glad I found this site.  I immediately stopped the topamax ( I did a gradual tampering).  I have been completely off it for almost a week and I am happy to report that I have noticed that  the last few days in the shower and when brushing I have not had as much hair fall out.  I am also taking some hair growth vitamins called Great Hair.  I am greatly hoping that I start to get some regrowth soon.  This hair loss is AWFUL!  

On a side note, I am back to full energy and my mind is not that of an 80 yr old anymore.  I can get my words out!  I have not had a migraine( knock on wood) since tapering or stopping the topamax.

I will post an update in a few weeks, I pray everyone gets back to normal and thank you all for your help.

[Janie416]

What dosage were you on, if i may ask?  I think that has something to do with hair loss.  I have been on the lowest dosage (25mg 1x/day) and have not experienced hair loss.
I have noticed a major decline in my migraines also.  But I still get them 1-2 times a month on the average.

My hair is thick also, and I wish you the best with your new hair growth.

And the elevated liver enzymes were due to taking too many Tylenol pain pills, not the Topamax as I originally thought.

[lolly123157]

I have been on Topomax (topamax) for 2 and a half years. Just in the past 6 months have I really noticed a major amount of hair loss even though I know it has gradually been getting thinner. It is now so bad that I went to my neurologist today to wean off the drug. He doesn' think it is topomax (topamax) and said that only 1% of users have reported this side effect. I guess not enough people are reporting it to make it a signficant side effect. However, I know that I have severe hair loss and I have to do something about it before I end up bald, so I am going off the drug. I am so fearful because I, like so many others, have finally found something that keeps my migriaines under control and has also given me the added bonus of weight loss which I have enjoyed. I just don't know what else to do.... I think it is the only solution for me right now.
I am almost 50 years old and have been taking 150 mg of topomax (topamax) a day.

[jen1409]

Hey everyone I see that the last post was a month ago so I don’t know how often people go on here, but I do feel a HUGE need and responsibility to post my side effects with this drug. I am 27 and in recovery for alcoholism. My doc put me on Topamax for anxiety and depression after going through treatment. I knew about the drug by doing research but not enough I guess. Topamax is showing in multiple research studies (below I listed from Wikipedia*) as a  possible wonder drug for a wide spread of different medical problems. I watched a HBO documentary about Alcoholics taking Topamax and it greatly reducing cravings (much like camprel). But the side effect of extreme hair loss, numbness/tingling in my nose and feet, acne on my chest back (really bad forums of that too) and neck are way too much for me.

PEOPLE CONSIDERING TOPAMAX:
I think it is very important for people considering going on Topamax that for me at least my hair loss was not a huge amount.... right away at least. I had been on it for about 8 months working fast up to 200mg twice a day. During that time noticed but not thinking anything of it really how I was losing hair. I also noticed that my hair seemed more damaged, dry, breaking, and more wavy (having to use my blow dryer and straighter) over the passing months while on the drug. Looking back in my monthly color/trim trips to my hairdresser I bought a deep conditioner, and a straightening serum, the quality of my hair was changing for the worse. I say all this because my hair loss was very gradual (in the first months of taking it) and I didn’t pick up on it till it was TOO LATE! I also lost a good amount of weight; I'm 5'5'' and was down to about 106. Numerous people made comments about how grossly thin I was getting, I had very little appetite.

At about 9 months I REALLY started noticing dramatic hair loss, doctor said it could be stress (looking for a job) but after finding so much on the www about hair loss I am freaked out. Everything people have posted on here was/what is happening to me. The hair in the shower, brush, and coming out in your hands. Finding it in clothes, in my bed, my car, and all over the bath rm floor. The worst was when I moved and vacuumed the whole apt and I am NOT stretching the truth you could make a wig out of the hair that was stuck in the pick up rollers!!!!

I just recently went off Topamax cold turkey because the hair loss was so noticeable and rapid and I am really scared!!! I am on minoxidil 2.5mg to promote growth and stop loss but I am aware that if I stop taking it hair will fallout. Not really able to say if it’s helping thou it’s only been two weeks. Overall I think that there needs to better awareness of this side effect and how much it can affect your life! Now im scared to take any meds because of this experience. I'm coming up on a year of sobriety and it’s been really hard having to deal with extra stress/depression to be a young woman with major hair loss. Doctors need to know how extreme this hair loss can be and how much stress it can cause. The side effects of this drug for me greatly out weigh the benefits, but I did have really good results with my anxiety and depression so its really unfortunate ;-(  It’s been a week since I went cold turkey and my hair is still falling out at the same rate pretty much... maybe a little less (minoxidil ?). Be an advocate for yourself as with any drug and make sure that you are paying attention to any side effects. If you are going on this med I would highly advise you to keep a close eye of the condition and amount of your hair.

SUPPLEMENTS I'm currently taking:

Women’s daily vitamin with nail, hair health (Trader Joes)
Omega 3 fatty acid supplement (Trader Joes)
B1
Folic Acid
minoxidil 2.5mg (RX only)
Ovation cell therapy shampoo, conditioner, leave in treatment
Eating lots of protein (eggs), veggies dark leafy greens, fish (salmon/chicken), flaxseeds, carrots

GOOD LUCK EVERYONE!!! I hope to see my hair coming back with all the stuff I'm doing and off the meds now. I need a little faith and prayer this is really hard to go through but good to have this to see I’m not the only one.


WIKIPEDIA*
Topiramate treats epilepsy in children and adults. It is sometimes used as an antidepressant. In children it is indicated for the treatment of Lennox-Gastaut syndrome, a disorder that causes seizures and developmental delay. It is also Food and Drug Administration (FDA) approved for, and most frequently prescribed for, the prevention of migraines. Psychiatrists have used topiramate to treat bipolar disorder,[6] but it is not FDA approved for this purpose. This drug has been investigated for use in treating alcoholism[7][8] and obesity,[9][10] especially to reduce binge eating.[11][12]

The drug is also used in clinical trials to treat Post Traumatic Stress Disorder.[13] A pilot study suggested that topiramate is effective against infantile spasms.[14] Another study recommends topiramate as an effective treatment in the prevention of periventricular leukomalacia in preterm infants after an hypoxic-ischemic injury.[15] Other off-label and investigational uses of topiramate include the treatment of essential tremor, bulimia nervosa,[16] obsessive-compulsive disorder, alcoholism,[8] smoking cessation,[17] idiopathic intracranial hypertension, neuropathic pain,[18] cluster headache,[19] and cocaine dependence.[20]

[Michelle12181966]

I am a TOPAMAX hair loss sufferer too! OMG! What a night mare! I took it about 3 years ago ( the real thing not the generic that I was recently on ) and did not have any side effects or hair loss. Took the generic for 3 months and the hair loss was UNREAL! I immedialty went off it cold turky and have not had any problems. ( only problem is still the hair loss ) How long does the hair loss continue? I will tell anyone and everyone to stay away from TOPAMAX!!!

[bookho]

I have been on topamax for 1 & 1/2 years and now realize that it is the reason that my hair & eyelashes are falling out/breaking off. I also have been having depression and anxiety-which I have never had previously. I went on topamax for my migraines. All of these side-effects have snuck up on me and overwhelmed me. I am currently tapering myself off the drug and am down to 25 mg a day for the next 5 days.(You shouldn't quit the drug cold-turkey b/c it could cause seizures.) I will then quit it completely. I now realize that topamax was a horrible foggy drug that caused me too many problems...I often didn't even realize what was really wrong with me. I felt like I was going crazy. I am also thankful for finding this post. Don't take this drug to lose weight.....you will end up with more problems!