I have a script for Topamax at CVS waiting for pick-up, I was planning to switch from the Neurontin because I've gained weight taking it. (The WC insurance company has put in a hold on any new scripts for me, requiring that they be "pre-approved." My adjuster is such a jerk!) My pain doc did tell me that people have trouble on Topamax because of side effects, but he wasn't specific. BUMMER!!! I DON"T want to lose my hair! It's always been kind of thin and fine anyway.

I also read about individuals have trouble with diarhea on Topamax. Since I take so much Percocet I've had trouble with constipation, I was figuring maybe things would balance out a little! That side effect I could deal with (maybe), but not my HAIR!

I'm going to try to do some research online to see what else I can find out. I guess I'm going to have to be a lot more careful with things. I did have an awful time with Lyrica and Nortryptoline (sp?), started and stopped them after only about 2 weeks. My main problem with the Neurontin is how fat I am getting

Thanks so much for the info, you guys have been a huge help (as always!)

xoxox Sandy

This happened to me too!!!

My doctor told me to take vitamins designed specifically to strengthen hair and nails. Also, nioxin shampoo works too (although it's expensive). These are just some non-Rx ideas. By the way - when I stopped Topamax, my hair got thicker again and I stopped going bald.

I just started Topamax, and I'm excited! I've just read this whole thread about losing hair, and now I'm NOT so very excited. I do have really thick hair, but I still don't want to lose any. I just want something -- anything -- that will help with the pain. I've been on Neurontin for 8 months, and I've gained SO MUCH WEIGHT!!! I'm weaning off Neurontin as I'm increasing my Topamax. I think I'll just hang tight and see what happens to my hair. At first sign of shedding, I'll go straight to my doctor and see what else we can do. Thanks!

Hi Jose,
I knew I was right. I have also had patchy hair loss in the last few years. I was taking Topamax also. I have been to the dermatologist and my medical Dr. and was told it may be hereditary or something in my system. I had never had hair loss or nor has anyone in my family.Yes, it was something in my system, Topamax. It has filled in now since I have not taken it in some time now but it is not as full or long.

Thanks for the info.

Just wanted to say that I have been on Topamax for quite some time - took a break from it a year or so ago when my neuro wanted to try something else, but other than that I think I have been on 200-300 for about 5 years.

I have not had any side effects at all - not even weight loss :-( other than diet soda tastes kinda funny now and then.

If it was not for this drug, I don't think I could hold down a job. Neurontin and Lyrica were NIGHTMARES for me.

Everyone is different. I would hate to think that someone would not try a drug because it gave someone else a side effect, when it may just be the drug that helps them.

Taking topamax has kept me off daily use of narcotics. Makes a big difference in my life.

I agree with 'daylilyfan': "I would hate to think that someone would not try a drug because it gave someone else a side effect, when it may just be the drug that helps them". It could be the one that gets someone back on their feet. We all try drugs with worse side effects than loosing hair. You could be the one who doesn't loose your hair. I take Neurontin, probably the highest dose allowed, & I do not have any side effects from it at all. Lyrica I gained weight & it didnt seem to help anyway so I quit it. Lactimil made me itch horribly so I quit it. Topamax, well it put me into what is medically termed "organically induced manic high" & I am not bi-polar either. So I quit it. It worked so well pain wise & I lost weight but the high was horrible. BTW, this side effect is so rare it is not even listed as a side effect. My doctor only found where this happened to one other person while researching for this side effect.

I would still advise people to try Topamax because it works so well for so many. If it does make your hair fall out & you want to quit then do it then. But you also might just not have that side effect. Also Josie took it for years before this started happening to her I think. Am I right Josie???

I was on Neurontin & switched to topomax about 8 monthes ago & couldnt be happier. I havent lost my hair. I did lose ten of the 20 pounds I gained on Neurontin the other 10 I lost thanks to the flu. So I wouldnt start freaking. Talk to the pharmacist. If you are one with hair loss problems there is something you can take for it. I cant remember the name but the pharmacist will be able to tell you. If your docotr thought it was going to be a problem & not better than what you are taking he or she wouldnt have prescribed it in the first place. Hope it helps you.
Denny

I too am on Topomax and have found it to be a great substitute for gabipentin and lyrica, both of which had intollerable side effects for me.

Remember everyone reacts to medicines diffrently, for me the Topomax works very well three ways..

1) It controls the brain cramps I was getting (felt like a tightning vice).
2) It controls alot of the stabby jabby pains and make life way more tollerable.
3) It is helping me loose some of the weight I have gained in the last 4 years.

I have not noticed any hair loss, and I consider the weight loss an asset (for the time being anyway) There has been no sign of diareah.. constipation has been my companion since getting RSD. Nausia.. I had that before the topomax and the only thing that helps me with that is medicinal MJ.

i have been off and on again with topmax for years i really like it but it kinda just stops working for me. so i go off it awhile then go back again. the biggest problem with me on topamax is kidney infections this med has been known to raise potissium levels in my and i have problem with my kidneys. but the last time i took it didnt have kidney infection so that was a plus.

about hair loss mine started with neurotion 11 years ago i have very fine hair anyways and i think that rsd is part of it. but the topmax i didnt notice any differnce in hair loss.
but like other said what works for you might not work for someone else or have the same side effects heck sometimes i can take a med then the next time i have horrible reaction.


carrie

I just found this forum and wanted to repond to this thread. I've been on topomax for 11 months now . . . . maxed out at 400 mgs per day. My hair has always been VERY thick. I've lost about 50% of my hair and am just starting to wean off of topo because of it. I can't stand the thought of loosing my hair!!

They want to put me on neurontin but I don't want that either because I can't take the weight gain. I have a history of cushings disease and have lost 119 pounds since my pituitary surgeries and bilateral adrenalectomy.

Are there any other options as far as medicine is concerned?

p.s. - Carrie you just helped answer another question for me and my endo. I didn't realize that topo raised potassium. Without adrenal glands I have to monitor sodium and potassium closely and my potassium has been running right on the high side at 5.0 lately and we couldn't figure out why. I had even increased my florinef a little to counteract. Ah-ha . . . see why it takes a village for sick people too!! Thanks