Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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JT1973 05/04/2011

I know others have brought this up, but I'm really starting to freak out about how much hair I'm losing. When I take a shower and run my fingers through it, clumps come out. And not only is it falling out, but the texture of it has actually changed. It's drier, frizzy and just thinner. Has anyone figured out if the PTC or Diamox causes this? I bought a bottle of multi-vitamins called "hair and nails" that contains biotin and collagen, but I stopped taking it after a couple of days because it also contains Vitamin A and I read on here that we shouldn't take that. Do you guys know of any other natural supplements or vitamins that might help?

spectacularone 05/04/2011

I bought a huge bottle of biotin at Costco that said "hair and nails". Still, one month later, I just scoop up my hair after my showers. It's out of hand. I have no idea which causes it, but I would suspect the meds because I had PTC for 6 months (and didn't know it) before I started taking meds and wasn't losing hair.

deleted_user 05/04/2011

I have bben taking Biotin ever since I had my surgery and my hair is not falling out anymore and is actually growing back. I take 5000 mg aday.

deleted_user 05/04/2011

My hair has been falling out for so long I don't know which is causing it either. Only that my scalp will be painful then my hair will come out with any pass of my hand through it and once my hair grows in is curly. I take 250mg 3x a day.

deleted_user 05/04/2011

My daughter has had a few bouts of excessive hair shedding or hair loss. It was tested and results came back as Telogen Effluvium. The first time it was most likely due to high fever/flu she had months before. Last year September it happened again - most likely due to the stress of her extreme IH pressures and the medications. Now she generally has more hair loss than she used to and sheds quite a bit, but she has such thick hair and it all keeps growing back in (although I am finding some really squiggly, kinky hairs now - she normally has straight hair!) Here is a link to some good information: http://www.dermnet.org.nz/hair-nails-sweat/telogen-effluvium.html

deleted_user 05/05/2011

Thank you all so much, All this time I just thought I was becoming an old bald man for no reason. Now it all makes sense, lol.

In all seriousness, this has been discussed here many times. you might want to search and see what you find.

Good luck hunting.

deleted_user 05/05/2011

I have been losing a crazy amount of hair right now. I finally went to my PCP for it and had blood work done to rule out the thyroid. Guess what--thyroid was abnormal. Went for an ultrasound--that too was abnormal, so now I'm waiting to get in with an endocrinologist.

Have you talked to doc about it? Just a thought.

meweird 05/06/2011

With me when i first started diamox my hair grew like crazy it grew super fast in a few months, then it started to fall out a bit faster then it used to i have very thick hair as it is. ( see my photo i've cut my hair since then once i saw how much more then normal i was sheading)

but i'm just assuming that diamox threw my hair out of wack making it grow faster and go in to the next state faster where it falls out before being replaced by new hair. my hair is a little thinner then it used to be but not much ( not to the point anyone but me really notices)

deleted_user 05/19/2011

Thyroid? Same thing happened to me a year ago. Had a thyroidectomy 3 months later. Hyperthyroidism/ Toxic Multinodular Goiters. Thyroid disease can also play a role in IIH..or, at least it's suspected. Good luck

deleted_user 05/19/2011

I have hair loss too. My PCP didn't think it was a problem, but then again, I don't have much faith in him to begin with. Believe it or not, my OB/GYN found that my thyroid & sugar were fine. But some other hormones were off that are produced in the brain and that only happens if there is a tumor or I am pregnant, which isn't possible. My cardiologist doesn't think my weight loss and hair loss is normal and has gotten me an appt with an endo in July. Neurologist is iffy about doing any type of spinal tapping for exact pressure due to my heart issues and blood thinner.
I hoping you find your answers soon.

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