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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Hereditary?!

TammyTooli777
TammyTooli777
The doctors say that PTC isn't hereditary or familial, but I have heard of quite a few families who have more than one person with PTC. Do any of you have family members who also have PTC? My son, 19, was just officially diagnosed. After having daily headaches for the last 10 years, and me pushing towards a diagnosis! He had an LP 10 years ago with an OP of 18, so they said it was not PTC. Well 10 years later his LP was 23, and another LP repeated 2 weeks later was 24, now they say yeah he has it. Oh and he has had papilledema all this time and now has some peripheral vision loss. So yeah it can be familial at least, if not hereditary.
RN4408
RN4408
Wow, that's awful that he has had papilledema all this time without treatment! Hope he will start to feel a lot better now that he's been diagnosed and can be treated.

I do not have any family members diagnosed with PTC.
magnatomamma
magnatomamma
I do not have any known relatives with this, but I suspect my grandmother may have had it, or had it in addition to other health problems. She passed away in 1997. There are a few people here that have it and also have a child with it. I think it is related to structure of our bodies and poor blood flow, etc.
mary1973
mary1973
No family of mine has it, but my daughter has brain tumors they cant remove, they are secreting and are managed with meds. They are in the sella, and now the pituitary is fattened and the stalk is bent. Funny how certain areas in famlly members are effected in some manner. My sella is empty.
mary1973
mary1973
Forgot to add I had paps with low open pressures on my LP's, 5, 7, 11
Sophiasmom06
Sophiasmom06
My son also has it. My mother has all the symptoms. There are reports in the literature of familial cases. The ihrf is doing a study of familial cases looking for genetic markers so make sure to register yourself and your son. Any doc who tells you its not familial is clueless.
Sophiasmom06
Sophiasmom06
Tammy, does Your son snore? The fact he has papilledema with such low OPs suggests to me that he has sleep apnea.
deleted_user
deleted_user
I'm here for my daughter who has this, I have been told to get a CT scan or head scan to see if I have any of this. I have gotten very bad headaches, been nauseous quite often,but never at the same time- which were two signs I watched for when my daughter was little, she was diagnosed at 2 months old.

I have not done the test, maybe in denial, and my symptoms were not enough or at the same time for me to get concerned and my main focus was on her, I do not have any other children, mostly for that reason too, her condition.

How is your son doing?
Sophiasmom06
Sophiasmom06
a CT is unlikely to tell you anything. maybe an MRI but unlikely also. you need a spinal tap to make the diagnosis. I went thru a period of chronic nausea but strangely my headaches were not as frequent during that time. what led to your daughter's diagnosis at 2 months of age? that is so young. what were her symptoms?