Well, good news and bad news.  The specialist I was told I wouldn't be able to see until the end of june was able to see me on 5/7/08-5/8/08.  She did a very very detailed exam and history with me. It was quite awesome actually, she listened to everything I had to say, and complimented me on my knowledge of IIH and migraines--and the steps I have done for myself to help get thru until I could see her. 

I started off the appointment explaining what I have been through the past 5 months, how the other doctor was a quack--telling me he was a 100% sure IIH wasn't back because I didn't have papildema--when the only way to be a 100% sure is thru a spinal tap.  She looked at my discs in my eyes and she was quite interested.  She saw strong blood flow/pulsating in the middle of the discs, but the edges were blurry(slight swelling)--and get this everyone, I am the only case of IIH she saw where it "disappeared" for 2 yrs, symptoms returned--and I have a piece of tissue growing over my optic nerve.  Her theory is that the IIH had changed the appearance of my eye, but she is not sure.  Right now, the plan is for a spinal tap weds 5/14/08 morning and a followup appt with her 5/15/08.

Now my Daily Headache varies in intensity, but I usually have auras, visual disturbances, uncordination (don't know if that matters),and lots of nausea everyday.  This doctor thinks it is quite possible for my IIH to have returned, and the strain with having the daily headache could definetely trigger migraines.  She talked to me about Daily Chronic Migraine, which she thinks is what I have, but like I said not sure yet---waiting for the spinal tap before we discuss diagnosis or prevenatative treatment. 

She introduced me to MAXALT MLT----fantastic!!! It melts!!! I have horrible nausea usually with vomiting, so pills don't usually stand a chance...........Phrenegan tabs and suppositories......then she had me try "indomethicine"----did not work out how I had hoped. I don't want to say it made my headache worse---but I described the sequence below:::::

(11:30am)One tab at first and it didnt make a dent in my pain (pain was about a 7, with nausea no vomiting), but it did double my nausea.

(12:20ish)Took a phrenegan, and about 45 mins later my nausea was better, but pain was still at a 7.

(1:00pm)Tried 2nd tab of indomethicine.

(1:30)pain was worse 9, more localized in the back right side of my head---as if piercing my eye, took 3rd tab of indomithcine--laid down with ice pack.

(2:30ish) eyes hurt horribly, head throbbed--movement was impossible, nausea had returned. tried to eat some toast, lasted in my stomach for about 15mins, then started vomiting.

(4:00pm) 1/2 phrenegan (12.5mg sup), delaudid 3mg

(5:15pm) no more vomiting, feel better---sleep. all blinds closed, no noise--ice pack

(7:45pm) woke, pain about a 3, slight nausea (only with cigarette smoke)

(9:55pm) laid down for bed---pain still around a 3, nausea 3---asleep within a half hr.