I took topamax for several years with no problems for migraines, then out of the blue I started having hair loss, I lowered my dosage..it didn't help..then stopped completely..still didn't help. It has been over FIVE years since I have even touched a topamax and still every year I go through months of hair loss. I have very thin hair to begin with, so I am now showing bald areas. Topamax causes reoccuring alopecia..some people never have the hair loss again after they stop or for numerous years..others have it like I do off and on all the time and the more times the hair falls out the less likely it is to grow back..which is exactly what I'm seeing. This is INSANE and not right at all!!! Topamax lists hair loss as a "least likely" side effect..yeah right!! not from what I see from people, but yet when I went to numerous doctors they wouldn't even consider it as the problem because of topamax stating that...I had to research it and diagnose myself..I would stop taking it and then try a small dose one day and magically enough more than normal massive hair loss followed. Some people have even lost all their hair. I am in my thirties and I don't believe I should have to live like this..and it cost a fortune for all the hair loss products to even try to save my hair..I will have to do this the rest of my life. I believe this company needs to warn people about this and not state it as a "least likely" side effect because it's not..people need to know what they are getting into..it will cost you the rest of your life to take this medication..it's not worth it! Good luck to all of you who are dealing with this..I really feel for you...I have been so depressed since all of this and can't stand to go out in public anymore! And to all of you considering taking topamax....DON'T...PLEASE!!! And if anyone is interested in filing a law suit and getting something done about this medication..I would be more than willing to do the leg work and get it started. Anyone can reach me at ***@**** free to write. I wish the bst for all of you..I know what a nightmare this can be!!
I just started taking topamax and my hair has always come out in clumps, but grows back just as quick, ok if my hair does fall out with this drug I'll wear a wig anything is better than the migraines right? I'm on 50mg just now and will eventually get to 200mg. I this the hair loss is more to do with diet and nutrient rather than the drug itself but who knows I will let you all know as I'm going to take suppliments also
Get off the drug topamax it is a Horror!!!! The hair loss is unbelievable. I have been on this drug for PTSD and I am taking myself off it. I have been with this medication for 2 years and have NO hair so I am saving what I have left. So good luck to everyone who reads this post but find another drug,and speak with your doctor because you are your own advocate. Good Luck.
I have been on topamax for about a year now and am on 100mg once a day at bedtime. I started out the medicine for my migraines and let me tell you it was a miracle drug for me. I have suffered with migraines for 17yrs and this was the first time that I went weeks without a migraine and then when I had one it was very mild and very short. I have always had thin hair but had massive amounts of it and it always grew super fast and I have always shed but my hair grew so fast that I never worried about the shedding. About 2 months ago I started noticing that my hair was shedding more than usual the shower drain had to be cleaned out more frequently, the brush had to be cleaned out more often, the wayward hairs were all over the place just more than usual. Then about a month ago I realized it was truly to the point of almost falling out to were I was afraid to brush it, take a shower everyday like I usually do. So I started researching and what do I find - topamax and hair loss. I am genuinely freaked out. I am ecstatic about the relief from the migraines but not to the point of losing my hair and having the stress of the hair loss from this medicine. I just went to the salon today and cut almost 8 inches of hair off so that I would have more body and texture and to help with the hair loss. I have an apt with my nuero next month and I will be taking myself off of topamax and looking for an alternative solution for treatment/management of my migraines. I hope the best for everyone that is suffering with this issue because I truly feel your anxiety and pain. I didnt think I was a vain person but when I started losing my hair like I am now I feel like I am losing a part of myself, a piece of my identity.
I think the best piece of advise I read on here is that for all of us experiencing this issue is to call the manufacturers of this medicine and report to them our side effects so that it gets reported and they can report this and more people can be informed. Also take your supplements and listen to your body and dont let anyone talk you out of something if you dont feel this medicine is right for you!! Good luck to everyone...
Don't take the stuff... I wasn't over weight, and didn't lose a whole lot, only 10 lbs. But my hair is falling out like crazy and I take vitamins like crazy and I'm one of the most healthiest eaters I know. What ever you do if you want to keep your hair don't take this medicine. There are better ones out there...
I've been researching my hair loss. I was on Topomax for about 6 mos. Didn't notice the hair loss until about 3 months into. I quit at 6 mos. due to the feeling of bugs crawling all over me. The hair loss has continued now for 4 months since stopping. I have lost about 1/3 of my hair. Had to cut it all off short because it was see thru and the tiniest pony tail ever. I'm devastated and embarrassed. I'm hoping to hear back from you that your hair is ok now or any help what so ever!
I've been on Topomax for a year and 2 months now and have worked up to 300 mgs a day divided into 2 doses.. When I was taking 200 mgs. a day I experienced no hair loss but when I was moved up to 300 mgs. my hair began to fall out tremendously and still is. I have always had very thin, fine hair. I'm a hairdresser and knew immediately my hair loss wasn't normal and brought it to the attention of my nuerologist but he told me it wasn't because of my Tpopmax-had it been the drug it would have happened straight away after first beginning the medication. I don't think I believe him. I fully trust my doc about my seizure condition and the need for the meds in general, but I don't think he's being up front about the drug because I think he feels I'll demand to be taken off the drug due to the side affect if he levels with me. Girls...it's the dope! You girls can change meds I think...surely there are other meds that will be as efficient for migraines and weight loss, but what can I do for my seizures? This drug is working wonders where nothing else was???? I'm truly concerned for my condition but I would really like to keep what little hair I have left if you know what I mean! HELP!?!?!?!
This drug just may not be worth taking. I stopped taking it about a month ago. Had some side effects from going off of it (night sweats, frequent urination at night). I lost a considerable amout of hair about a yr ago and until now did not know why. I am most positve it was from the topamax or losing a few pds. I weighed about 125 before and now weigh 112. I was on it for about 5 yrs. This drug has alot of side effects but it worked while I needed it. I was treated for PTSD with this drug.
I to am on Topamax I am on 400mg and my hair has been just falling out. My boyfriend gets mad at me for all the hair in the drain at the bottom of the shower. I didn't know this was a side effect either. I've lost 54 pounds but I've also lost a lot of hair as well so I don't even know if it was even worth it now. My hair is all thinned out and I am afraid that I am gonna be bald I just had my boyfriend check my head and he kept telling me it was my medicine I kept telling him no it couldnt be because i never seen that as a side effect, so I just got on the internect and found this. Thanks everyone I think I am gonna just stop taking and have my doctor change the meds to something different she also has me on wellbutrin as well.
I am so sad that I did not know this before. I experienced gradual hair loss since 2005 and have been on Topo all that time. It helped my migraines. When I started menopause, my hair began to fall out the last month in clumps. i will not have have hair by the end of the year if I cannot get it to stop. I am reducing the topo slowly. I am taking Evening Primrose, Biotin, Rogaine, switched to Aveda hair propducts. I was known for my lush hair. No I just look old, tired and sad. I am really mad that I did not know this was a side effect. My hairdresser did not even let me know how bad it was getting (hard to see on yourself). It was not until the clumps came out in the shower that I saw it was serious.
I have been on the Topo for 3 months after seizures. My hair is falling out in lumps in the shower and when I take it out of my pony-tail. Yesterday when taking my towels out of the dryer there was a hugs mass of hair wadded in the towels and the dryer lint. I just called my doctors and left a message as what to do?? I have to be on this drug for at least 6 more months for the seizure prevention but I don't want to loose any more hair because I like my hair! I lost weight in the beginning but I am now maintaining my weight. I looked up other anit-seizure medications and they too have hair-loss as a possible symptom from taking the drug. You take one drug, then have another problem, take more drugs, have another issue and more problems. Good luck everyone. I don't shave my legs or arm pits but that hair seems to be staying in place; my husband wonders why at least we can laugh about that together.
Thank you to everyone in this forum for helping me make my decision. My doctor told me to stop taking it cold turkey today after I called in hysterics. I was still a bit scared because of other meds I have been on. I am stopping cold turkey tonight as I believe him now because of this forum,and no place else.
My hair thanks you,
That is terrible, I'm having the same problem please let me know if you are getting better, I'm still taking the medicine, but Im thinking seriously stop it.
I took topamax for 6 days ( 6 freaking days) and started to lose so much hair. I was only on 25 mg. I knew about the possible side effects before taking it but decided I would give it a shot. On the 6th day in the shower my hair started coming out by the root even more when I brushed my hair. It freaked me out and I quit taking the medicine right away. The hair loss continued for about 2 months. Every time I washed my hair I would want to cry ! Thank God it has finally stopped. I will probably never take this medicine again.
I took Topomax for about 4 weeks for Migraines. Which it did it's job. Unfortunately I started to lose my thick hair and I was dropping weight ALOT (A side effect I wasn't hoping for) All in all in about 2 weeks I lost 15 lbs and by the time I stopped taking it I had lost 25. After I stopped, I read that taking Biotin (5000mcg), selenium, zinc, and folic acid would combat the hair loss along with eating lots of protein and drinking a lot of water. I started this regimen right after I got off, my hair loss stopped immediately. Part of me wants to try Topomax again with this staunch regimen but I think I'll hold off
I started taking topamax 3 months ago for seizures I weighed 110lbs was 11% body fat looked the best i had ever looked in my life after having three kids. No seizures with the topamax but the side effects are horrible if i would of known all the horrible side effects and read up on these sites before starting this drug i would of never stared it. I would rather have a grandmal every couple weeks then the nasty side effects i lost 10lbs i cant work out anymore i am losing all my hair feels like i have pins and needles in my feet i have difficulty concentrating or paying attention i had to start taking a nausea medication just to be on topamax loss of appetite i have diarrhea memory loss anxiety my gums swell i got increase of acne all these side effects are not worth not it wish someone would of told me before i started taking it best of luck to you. I even tried taking weight gainer shakes and vitamins biotin and fish oil and didn't help my hair loss or my weight really think about it before you start taking it or ask about other drugs that are available with less side effects I went to the Dr. yesterday and begged them to take me off i could not take it anymore. Best of luck to you I am 33 and have had seizures since i was 12 this is the longest i have ever went without having seizures is using topamax but again the side effects are just not worth it i have never had a drivers license and thinking i might have been able to get one staying on topamax still was not worth it to me.
I mentioned this in my post on Topamax, but I've been on it for 3 years and take 150mg and I used to have very thick hair and last summer my stepmom commented on how thin my hair had gotten, but there are not bald spots and had she not mentioned it I really wouldnt have noticed it.
The topamax combiined with my 60mg of Paxi and other medications have been wonderful and I have no plan to get off of it unless I have to because I'm unsure if my hair thinning is due to genetics or my thyroid or if it is iin fact the time on Topamax. Sorry I can't be more help.
I was on topamax for a year and I started noticing more and more hair falling out. It has been a year an I take evening primrose oil and skin, hair, nails vitamins, calcium, d, b12 and e and c. My hairdresser to have stopped falling out. My hairline went back and my scalp (temple area) is thinner than the rest of my head. I have been adding castor oil to my leave in conditioner and it seems to be helping. Castor oil thickens your hair and helps it grow. There are several you tube videos. I add it to my conditioner twice a week. It also leaves my hair healthy and shiny looking
hi! i am just like you!!! and i am desperate now :(
did you get off the topamax?
how long did you take it after your hair started falling out? thanx
I take one 25mg pill of topiramate a day for migraines , I noticed hair lose only 3 weeks into taking the med. It comes out when I am just moving my hair out of my face, I use a colm it comes out in gobbs, take a showers I can feel it just running down my back and seeing it going into the drain. I hate when I am washing my hair and I get hands filled with it. It is bad. I was never told about any side effects on the meds like this. Side effects I have a are Hair loss, Tingling of hands and fingers, tiredness alot, mood swings at times. Granted no more migraines. My next appointment is soon and I am gonna see how I need to go off these meds cause. After 1.5 years on them it is time to see if I truly even need them anymore. And I have heard from others there can be bad side effects going off them as well.