Well yesterday went pretty good but today is the off day. I have been on the last week of steroids where I take 1 mg one day and none the next. Today is a day without any and tomorrow is my very last day at a dose of 1 mg (knock on wood if I can tolerate it).
So here is how the evening went:
I fell asleep on the couch again watching Stargate while eating a late dinner to wake at 2 am. Then I tried to go to bed after 3 am. It never did happen and I did not want to take sleeping medication that late. 4 am rolled around and I was up tossing around. Then at 5:30 am I had a hot flash where I had to remove all the blankets and my socks. The hot flash returned again later this morning. All evening/morning I was completely restless spralling out all over the bed in many different positions.
When after 8:30 am rolled around it felt like I had a bad hangover and someone with a giant hand was squeezing my brain in his fist. I last took the pain reliever at about 5 am so it was not time to take it again. I learned through my general doctor that sometimes these headaches come on through sleep as there is a greater concentration of carbon dioxide that builds up in the body while resting. Thus, even though I was really tired and yawning, it was time to get up to get more oxygen to the brain and some relief.
I also get nauseated and have minor episodes of acid relux. This is made better by eating actually so it was time to also get some breakfast.
When I get up I can't dash out of bed. It takes me about a half hour to make the transition. If I get up too fast my body is not ready yet and gets weak and I get light headed (several people with NF2 will probably be familiar with this feeling).
Anyhow, after some nourishment, I had to take a nap again. After being up for over an hour I am feeling much better and am hopeful that this will last throughout the day.
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