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...
hi all. my name is nova, and i'm a 24 y/o woman who has had one run-in with pseudotumor in 2011. i fear it's coming back, and i am very scared...
looking back, my ptc was kind of funny. not "ha-ha" funny, but "wow, running around and trying to get this diagnosed is a pain in the butt!" funny. when i first went to my pcp for my headaches (and for my vision blacking out for a few secs when i bent over), they diagnosed me with a sinus infection. it was early spring; lots of pollen, all that. it was a logical thing to conclude. i went on antibiotics for a bit and started taking prescription strength ibuprofen. then, when my vision started failing, i went to my eye doctor. my vision had gone from 20/20 to 20/100. doc told me my optic nerves were very swollen and that i should "lose weight" and "see a specialist in two weeks." we didn't wait for that, thank goodness. since we lived close to philadelphia at the time, we took a trip to will's eye hospital (a constituent of jefferson).
i spent four days there because i was informed that the only way to diagnose the condition is to perform an lp. i am absolutely terrified of spinal taps. i spent the first day crying, said yes on the second day. i had to be heavily doped up on anti-anxiety meds before they could get anywhere near me.
the procedure itself is not bad. i know many of you have been through it many times, and i'm so sorry that that's the case. i'm also sorry for coming off as such a huge baby over something that shouldn't be such a big deal, but i really cannot emphasize enough how terrifying this procedure is for me.
after the lp, i was discharged, put on 600 mg of diamox for 6 mos, and had monthly (and eventually bi-monthly) examinations with the neuro-opthalmologist that had been in charge of my case when i was in the hospital. they ended up concluding that it was most likely the long-term antibiotics i had been taking (tetracycline antibiotics for my acne) that caused the ptc. after i kept checking out well, my doc told me that she would see me in a year. checked out well then and was told i did not need to keep coming.
i have been totally blessed and symptom-free for four years, but now my pulsatile tinnitus is back. it started about four weeks ago, if i had to guess. i hadn't had any headaches until now, but they're on their way to settling on in: when i get up, i feel a throbbing in my head; if i lean over, i feel pressure. the headache isn't constant in the tinnitus is only in one ear right now.
my issue is this: i am now living totally across the country in los angeles and have been for two years. my family is 3000 miles away from me right now. i don't know what to do because i don't have a relationship established either with a pcp or a neuro-opthalmologist out here. what do i do? i have a referral for an opthalmologist from my pcp. is that where i should turn first?
i am sorry for all the silly questions, and i am sorry for being so scared. and i must ask: will i have to get an lp done? can the opthalmologist simply prescribe diamox (which i responded well to)?
Have you gained back the weight you lost previously or taken any medication any new medication or had an illness that may have had a part in the symptoms returning? Hope you find some relief soon.
no new medication, but i have gained back a substantial amount of weight after dropping close to 65 lbs two years ago. i am now working on eating much better and losing weight to hopefully alleviate my symptoms.