topomax and hair loss

[sunflower200]

I am still waiting for a doctor response (over 10 days), so I thought I would turn to the community forum for help.

Hi---I am 37, a faculty member, living well. I was diagnosed with a seizure disorder at 17 after being found unconscious in the front yard one early morning. EEG showed temporal lobe abnormality. Non intrusive absences followed as I was placed on tegretol. Meds were regulated and I remained on tegretol alone for all these years....until 12 months ago. I moved and began seeing a new neurologist and was going through IVF therapy. I began on topomax (topamax), which was a very rough ride. Many vision difficulties and a great deal of language loss for 4 months. As I titrated up to 200mgs per day (6 month process), I noticed my hair thinning---and after the 6 month period, it really began dropping out in masses each morning in shower. I have lost over half of my hair. I made no connection to the topomax (topamax) until 4 weeks ago when it struck me to check out the drug. There are many listervs with migraine sufferers and epileptics mourning hair loss and topomax (topamax)---and their neurologists' denial of the relationship. I located a PDR, and it does list alopecia as a "less common side effect". I decided to pursue expert neurologists at a research university 3 hours away from me for help---and a medication switch. They denied my hair loss could be due to the topomax (topamax), flatly, and recommended I use Head and Shoulders. I was dumbfounded that they were denying this was an empirically researched side-effect that I was experiencing. At this point I feel completely hopeless. Others on the internet report the loss does not cease. The cuticle is altered and weakened and remains months after the medicine is changed.


Can you affirm my diagnosis? Can the PDR be wrong? What would you do? Keep hunting for a neurologist that will help me? I feel very powerless. It is ironic that my area of research is patient-physician communication.

Help my hair----

Thanks for anything you might have to offer.......

Sunflower

[beckyinaz]

WOW...  I was on topomax (topamax) for a couple of months and now see a conection w/ me.  I can pull tons of hair out when I am taking a shower and then a noticable amount comes out when I am combing it.  The other day I was wondering why am I loosing so much hair.  I never have talked to my neurologist because it has happened after being on it.  I had many of the other side effects that I got off of topomax (topamax) and I am now on Keppra, and have finally come out of the topomax (topamax) fog I was in....

[jenny2008]

Hin
Most probably  your hair loss is due to the drug topomax (topamax) .

I am unable to understand why the neurologist is not accepting that. May be he feels there is some other cause.May be he felt you will benefit from this drug.

But most antiepileptic drugs cause hair loss.
And Topomax (topamax) certainly causes hair loss. http://www.rxlist.com/cgi/generic/topiram_ad.htm
You can meet a skin speacialist to rule out any other cause.
Take care and don't stress too much about the hair loss as stress aggravates hair loss.

[sunflower200]

Did you hair loss stop on the Keppra? What was your Topomax (topamax) dosage?

[beckyinaz]

I just recenly really started to notice it the last few months.  I had experienced the same thing after the birth of my 2 children, so I thought maybe it was hormonal and never thought about medicine doing it.  I honestly don't remember off the top of my head what dosage I was on.  I am now on Keppra at 1500mg a day.  I had a cavernous malformation that caused a seizure last Sept and had it surgically removed almost a year ago (Dec. 14)  I don't remember most of this past year!  Which is hard w/ 2 young kids!  I will try to find out what my topomax (topamax) dosage was and let you know.  

[beckyinaz]

OH-I was on 75mg 2xs a day for about 3 months.

[PGHRCK]

This is an interesting place. I went looking this morning for some information on Topomax (topamax) and wound up here. I have been on Topomax (topamax) since 10/06 for chronic migraines with dramatic improvement in a 40 year history of suffering with them. That improvement has come with a price that I am now questioning. Because I have hypothyroidism I have unfortunately not experienced much weight loss (which I could afford) but due to a profound alteration in my taste buds, I have stopped drinking carbonated sodas, probab(I'm a life long Coke addict, the beverage-kind, probably, in part, headache-related, because of all the caffeine in cokes).  I think that side-effect alone will probably save me from type 2 diabetes, so even though I will never enjoy another Coke, it's probably a good thing. I have had really severe cognitive problems with the Topomax (topamax) though and have a really hard time with my memory, concentration and word finding. I feel profoundly stupid at times, and this is happening at a time when my cognition is getting slammed by menopause as well, so I am REALLY profoundly stupid. It's a good thing my husband is a neurologist who understands that I am having side-effects and not sliding into early dementia, but I wonder myself sometimes. It's funny, I have noticed hair loss, too, but have been attributing this to my thyroid, even though I feel pretty good otherwise. My hair is now as thin as it has ever gotten when I was very sick with my thyroid, but I don't have any of the other thyroid-related symptoms I had back then, so maybe it's the topomax (topamax). I had no idea topomax (topamax) caused hair loss. I will tell you that if you read the patient forums for thyroid disease, hair loss is a common problem and one that is not well-addressed by traditional medicine. Some patient advocates and patients swear by evening primrose oil which was mentionned above, in twice daily doses of 1000 to 1300 mgs, however you can find it. You may need to use this for several months before you see results.  I am hoping it is worth a try. In the meantime, I am cutting back on my Topomax (topamax) dose myself. I am down to 75mg per night. Iam still not experiencing an increase in headaches, but I'm no smarter yet either. Good luck, all. God bless.

[amyp9377]

Hi - I was on 100mg a day for my migraines.  Felt the same exact side effects.  My friends called it "stupimax"  however, it work wonderfully!  Then my hair started to fall out.  I realized I did not want to be dumb and bald so I stopped.  I would love to take it again if someone knew a way to prevent the hair loss.  I am taking extra biotin, selenium and zinc and that has helped boost the growth.  Have you taken the evening primrose oil with the topomax (topamax) and have seen the hair loss stop?