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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/ Pseudotumor Cerebri Support Group

Feeling Hopeless!!

crystal521
crystal521
Well, I have been going to the doctor what seems to be every week since I found out I have PTC. Everything I go to the doctor they tell me something New that is associated with this, for once i just want them to say everything we have been trying is working..... I have hearing lost in my right ear (it has been busted for 3 months now, not healing) the damage is permit, nothing they can do for.. :( Then i go to the eye doctor, because i have been have trouble seeing and i have been going blind in my left eye a couple of times a week, so they tell me i have A LOT of CSF around my optic nerve and they are wanting to put a sheath in my eye and i said way don't we wait and see if the medicine (diamox) will work, they FINALLY agreed to that, but i have to go back to the eye doctor today to get new glasses to help me see better (oh did i mention that i drive all day for my job).. The diamox is working it is starting to ease my head but has not taken the headache all the way away yet (i go back to the neuro doctor next week) i am gonna tell him about everything and see if upping the dosage will help, but we will see..

Does it every get any easier having this?
mary1973
mary1973
Yes with lots of work. Stop all high fructose corn poison, table sugar, gluten, food additives, fast food, russet potatoes. If you can try to do a high protein diet with low carbs, and some fruit. Water should become your best friend. Food does help and pretty quickly to bring down the pressures. Have you had a thorough sleep study with an eeg done yet?

Mary
crystal521
crystal521
Mary, Thank you for your advise.. I have given up gluten and soda (taste like metal) and pretty much everything sweet. I have been on a High protein diet since i found out i have PCOS three years ago it helps me with that. I have not done a sleep study but i have done a eeg and everything turned out fine on that one so he doesn't want me to do a sleep study yet..

I have been searching the web to see if i can fine something to help with the tingling i have but nothing has turned up for that...
mary1973
mary1973
That's the Dr mistake, and a very big one, he is putting you at tremendous risk, demand a high quality sleep study at a very reputable lab, to include the overnight eeg. I recall something some of the members here using for the tingling, I'll search old posts to find it for you!
mary1973
mary1973
Wanted to also mention, my I IH actually was caused, or else caused epilepsy. Anywho, was started on Keppra, my IH headaches are a thing of the past, so is every symptom. So the question in my situation would be...what came first the chicken or the egg!
Could this be a consideration for all of you as well?
Do you know undiagnosed sleep disordered breathing causes all of these issues.