Year Long Headache Diagnosed In Nov 2007

My story starts with a headache that began in May of 2007.  I thought it was stress related, and didn't give it a whole lot of thought for a month or so.  Sometimes i would get dizzy, light headed - have some funky vision loss, etc...  Finally my friends convinced me that this was not a normal headache, and i should see a dr.

My PCP gave me some pain meds and said come back in 2 weeks.  2 weeks later, no change in the headache and no relief from Lortab.  He sent me for CT scan and MRI, and then to neuro #1.

Neuro #1 decided that i had migraines and started trying all kinds of migraine meds that didn't do anything for the daily pain.  I kept telling him I didn't think I had a migraine, but he was convinced.

I went for a second opinion to neuro #2.  He said i had hemicrania continua, and this one med would make it go away, no problem.  I tried that for a few weeks w/ no change in the constant headache, pain and other symptoms.

Back to neuro #1 who said that I would have to go to Boston or NYC, since he didn't know what to do with me.  Fortunately, he mentioned that there was a new neuro at a local hospital who had recently relocated from NYC, and perhaps I should go see him first.

THANK GOD!!   Neuro #3 immediately ordered a spinal tap, and diagnosed PTC.  Now we are treating w/ Diamox slowly increasing the dosage.  Regular visits w/ an opthamalogist. Going for LP #2 in a few weeks.  Hopefully, we don't have to take the next step and start looking at a shunt.

That's my story, and i'm sticking to it.

Squeesan Squeesan
41-45, F
1 Response May 16, 2008

I was diagnosed at the same time - but I got the visual symptoms not long after the headaches started. My partner kept looking at me like I was crazy because I kept having headaches that would send me to bed for 3 days. the nurse at the health clinic at my school thought it was all due to a sinus infection... she was wrong, but she's an NP who treats college students all the time - she told me what she knew, you know? I saw my optometrist thinking maybe I needed new glasses, and he found papilledema. Sent for MRI and LP - scary scary scary. Do you see a neuro-ophthalmologist - mine says weight loss and diamox until the weight loss is significant enough to reverse the condition... unless you're skinny, I guess.