Topiramate, Weight loss, hair loss...what is going on here??

[GettingThere]

Ok so a little background...I have chronic migraines that I have battled for YEARS. It got to the point that I was having a migraine about 4-5 days a week and a severe (put me in bed and prevent me from doing normal things) migraine about 1-2 times a week. I would treat them with OTC meds, decongestants, prescription meds, the triptans (imitrex, etc) but nothing would completely relieve them. Then about a 11 months ago I started taking topiramate (generic Topamax). I gradually worked up to 100mg once a day and it is working like a CHARM! I very, very rarely have a headache at all. I'm talking about 1 every 2-3 MONTHS now and when I get them I can take ibuprofen and have them go away. It is amazing for someone who has had migraines for all of her adult life;)

I have also lost 40 pounds so far over the last 3 months or so. I think some of it is from the topiramate (one of the "side effects" is weight loss) although I have made a ton of healthy lifestyle changes (healthier diet, more exercise, no longer drink sweetened liquids, smaller portions, etc). My diet is COMPLETELY different now than it was 3-4 months ago. I take magnesium and vitamin D supplements every night with my topiramate. Other than that I do not take any vitamins or other medications.

Now, my problem is (if you read this far...:() that I am losing more hair than normal. I am one of those odd folks that knows I used to lose about 30-40 hairs in the morning when I washed my hair. This includes combing before hand, in the shower and detangling again afterwards. I realize this is nowhere near the 100 hairs a day that is considered "normal". I also used to always get comments on how "thick" my hair was...from hairdressers, friends, etc. I have gradually noticed that I am losing more hair in the mornings. I *think* it started about 2-3 months ago. I now am losing 70-80 hairs in the mornings. My hair "feels" thinner to me...my ponytail feels thinner, my buns feel smaller and it seems to not take as much "strain" on my clips and clamps to hold them up. I cannot see scalp and I definately do not have any bald spots or anything like that.

Now, in reading I have seen Topiramate linked to hair loss (specifically telogen effluvium). The incidence reported online seems to be higher than the 5% the drug company reports. And I have been on this drug for 8-9 months BEFORE I noticed any changes in my shedding. I have also read that sudden, significant (>20 pounds) of weight loss can also cause increased shed. So I am at a loss. The drug works so well for my migraines that I hesitate to go off it unless I am *sure* it is the culprit. And I noticed the increased shedding and thinning about the same time the weight loss started. But I'm not sure if the shed will start that quickly with weight loss????? I also wander if some of the reported hair loss with topiramate on the internet is actually linked to the weight loss these same people have. I am just so confused!

Anyone have any experience with any of this? Any advice?? I plan to start taking biotin and BComplex just to be on the safe side.

[anitacs9101]

I don't know anything about the drugs and such, however I can say that I went through a mini-shed once and, me being paranoid, my pony felt smaller and my hair felt thinner. But I measured after the shed and I didn't even lose a little :p

[GettingThere]

When I first thought I noticed more loss I measured the circumference of my ponytail...I need to do it again to either confirm that I am losing more or put my mind at ease:o I really try not to stress about it because I know that stress can cause hair loss and it would really be a shame to stress about it enough to cause the very thing I am worried about....

My main concern is that if I really am losing more hair I have no idea which thing is causing it. Or maybe neither. Maybe it is a natural cycle I never noticed before or something else alltogether.

[battles]

I'm a regular on anticonvulsants. :p I've been on Topamax, and now I am on Zonisamide.

I don't think my shedding increased greatly when I first started, but it has recently. :( I've been having a difficult time eating enough. While on these, please make sure you're eating well. I don't know if you're having loss of appetite, but that could contribute to shedding.

[lindaton]

I know what youre going thru. I have had migraines all my adult life too. Been on every med there is as preventative. Topomax was the last one I was on and I went off it about 8 mo ago. Just wasnt working. Since then I have started exercising and lost about 20 lbs. My nice extra thick hair is about half what it was and still falling out in handfuls. I started Biotin and Iron and some aminos but nothing has helped. If I remember right I read that a shed usually only lasts 3-4 months. Mine has been falling out since May. I went to the derm and all she said was take biotin. I do know in the past one of the side affects I would have with meds would be more shedding but not like it is now. Hopefully someone will reply with a magical cure.

[AutumnLocks]

I lost lots of hair right before I was diagnosed with diabetes. You might want to get yourself checked for that.

[renia22]

Have you googled topomax & hair loss? Lots of other people report the same side effect. Not sure if anything would help with this besides finding an alternative treatment, though it sounds like you explored other options already. Meds can be tricky, even over the counter meds can be linked to hair loss so one can never rule that out. Good luck, hope you find a solution.

[GettingThere]

So the hair loss has actually already decreased in the shower since I posted the original thread. I did start the biotin supplement but I've only been taking it for about 5 days so I am sure it has nothing to do with the decrease in shedding;) For now I am going to hold on and see how things go...the Topamax works so well for the migraines I REALLY do not want to jump the gun and go off of it unless I absolutely have to. I'll keep you guys posted!

[MrsGuther]

My sister and my husband have both been prescribed topiramate in the past. It did cause weight loss for both of them, but I am not sure about hair loss. I don't think it caused hair loss for either of them.

[Charybdis]

Ok so a little background...I have chronic migraines that I have battled for YEARS. It got to the point that I was having a migraine about 4-5 days a week and a severe (put me in bed and prevent me from doing normal things) migraine about 1-2 times a week. I would treat them with OTC meds, decongestants, prescription meds, the triptans (imitrex, etc) but nothing would completely relieve them. Then about a 11 months ago I started taking topiramate (generic Topamax). I gradually worked up to 100mg once a day and it is working like a CHARM! I very, very rarely have a headache at all. I'm talking about 1 every 2-3 MONTHS now and when I get them I can take ibuprofen and have them go away. It is amazing for someone who has had migraines for all of her adult life;)

I have also lost 40 pounds so far over the last 3 months or so. I think some of it is from the topiramate (one of the "side effects" is weight loss) although I have made a ton of healthy lifestyle changes (healthier diet, more exercise, no longer drink sweetened liquids, smaller portions, etc). My diet is COMPLETELY different now than it was 3-4 months ago.

Man, if Topamax had worked that well for my migraines, I'd keep taking it if it made me BALD. Dead serious. Unfortunately, it only decreased the frequency of my migraines as long as I kept upping the dosage, and I still had weekly headaches even when it was helping. I'm really glad it's working great for you -- finding the right drug is like a miracle.

I also had amazing weight loss on Topamax. Be warned, though -- for me, when I stopped taking it, my appetite came ROARING back. I had lost 25 lbs on Topamax, going from the middle of the healthy BMI range to just slightly underweight. After stopping Topamax, I gained back the 25 lbs, plus an additional 25, putting me at the lower end of the overweight range. Now, years later, I'm finally back to the weight I was at pre-Topamax. What I found was that it was very easy to eat an ideal diet and control my portions on Topamax because it made me not care about food. No food cravings, no desire to eat if I didn't need it. The flip side was that, when I stopped taking it, I wanted to eat everything in the world.

Anyway, I have no opinion on whether or not you should continue Topamax (although I certainly would have if it had been that effective for me). Just be aware that there can be a rebound effect with the weight loss. Personally, I never had noticeable hair loss and I was on an equally high dosage towards the end. But side effects can vary from person to person, and I think thinning hair is one of the more common ones. Hope the biotin works for you!