The Drowning Brain

When Jessica told me about the intracranial hypertension, she told me I had too much cerebralspinal fluid around my brain. She told me had they not caught it in time, I may have gone blind in 2-3 years, so we were fortunate.

Jessica spoke of the hope for treatment and return to normal life, and gave me an antidepressant because clearly I was sad. Celexa. 20mg. It didn't alter my feeling or make me feel anything but a little less down, and facing this reality of a this diagnosis that has no cure- I was grateful for a little regulation of my emotions.

She gave me the generic for Diamox- 250 mg twice a day. Diamox is a special waterpill designed for fluid in the brain and it provided a minimal, but noticeable effect as well- once I got through the intense pins and needles in my extremities having me up dancing and whooping and howling out in disdain at the effect... but if it was going to be a course off of the migraines, I was great about it.

She also gave me the paperwork and a referral to a Neurologist in Delaware she highly recommended and had me coming back to see her in a month.

I read the paperwork thoroughly I examined my MRI scan result. I researched

Hope. There's not a lot of it. But there's a chance for it, so I choose it.
Hope that the meds will help. Realization that some do go into remission and never experience the issue again. Hope that I could be one of those people!
I read about the alternate names Idiopathic Intracranial Hypertension - (idiopathic, meaning no known cause)
I read about different cases of it, different symptoms and different studies. Different treatments.
Hope. I was armed with it. A fighter attitude I'd learned from my Pops, I was not giving up without a fight. Not letting my disease dictate my life.

I was determined to only take a short break from school and return fully when things were back on track Summer seemed like a logical term. I was hopeful! I was determined.

I went to meet Dr. Denise Cambier at Ohio Health in Delaware. Also a lovely woman. Ib went in with my brother, Chuck in tow. He was a comedien, as always! But he gave me the ultimate hope of all... reminded me I am Warren Johnsons kid and dammit, we aren't a one of us in anything we go through alone, and to remember he is there for me. Always. True story!

Dr Cambier ordered a Lumbar Puncture. AKA Spinal Tap. She explained a lot about the disease and the migraines. She doubled my Diamox and added something for daily suppressant of the migraines. Topomax. She told me to take 2 Aleve and an allergy pill daily to help She also prescribed something for the nausea, which in the end makes me pass out, so I only take that if I don't have to work. I still work two Jobs!

The topomax was definitely interesting- but lets get the the procedure first. The procedure was ordered to be a test, to see where my spinal pressure was, and to draw off some spinal fluid to be used for testing This is the only confirmation of the disease, and while it was evident in the MRI scan, it still has to be confirmed. This was my second opinion.

Dr. Ryan at Grady Hospital. A kind man with a gentle disposition, and joking nature. God, I am grateful for your Grace! This was a great and gentle man who told me that he used a normal spinal needle (not the huge ones they usually use for the obese) and he went in between L3-L-4. He also drained off 20cc of spinal fluid and told me to expect some relief from that! That hope alone made the sense my spine was being pressed through my abdominal wall a little less dreadful.

It didn't happen right away, but over the next half an hour or so, I dropped from a level 5 headache Id had for 4 months by now, to about a 3-4. ive become a master ay guaging my pain. Ive had to.

but here we are... with HOPE! there was HOPE! MAYBE THIS WAS IT!!!
He confirmed I had the Pseudotumor and determined that the drainage provided some relief! Maybe I was going to be one of those cases where they caught it early and got on top of it quick! Maybe I wouldn't go blind, and wouldn't have to spend the rest of my life in misery, and feeling like I was losing my mind because I couldn't focus or concentrate or do the basics I needed each day to live...

Reality is that the initial relief  hasnt lasted but it sure helped! Trust me when I say when you deal long term with an illness which dictates your life you become master at trying to cope.

THE Topomax... Made me feel drunk . Not happy drunk but awkward dopey drunk.

Suspicion came that this was med was the cause of the horrible effects that came next....