Howdy, do, peeps, thought I would give an update on my lil “wink” face situation. While there has been vast improvement in recovery of my eye returning to its rightful place, lol…. It alas still looks like a lil wink, haha, good news is pain has been drastically reduced to a dull roar, with only a couple how do you do “ice pick in your brain” pains, here and there, to remind me it might not be over just yet.
Sooo I decided inspite of it, to put on my face, get dolled up, and ignore the ice picks, and pretend I am normal, only problem with that was….I’m not:(…..I fell asleep. When I woke up for the 3 Rd time, I hoped that was the end of it. I had taken my Modafinil, but today it definitely isn’t working. Some days have been worse some days have been WAAAAYYY BETTER, just trying to figure it all out. Especially now I am realizing that I have to look at my narcolepsy/cataplexy differently because of my hydrocephalus, and how it affects me differently when compared to someone with narcolepsy and no hydrocephalus. If you are reading this, and you have narcolepsy with hydrocephalus I would especially like to hear from you, please. Anyhoo, I continue to work on my health, and get answers where I can, every little bit helps. I see my sleep doc soon, to discuss different things I can try , and the narcolepsy/hydrocephalus combo, and how to approach it more successfully, if it’s possible:) Anyhoo, enjoy the rest of your weekend, I’m waiting for the rain to roll in, haha! Ciaos for now😘