Sleep and Brain swelling thoughts and question?

Hello All,

There are great helpful things with our sharing how this condition affects each one of us individually and differently.

Two different observations of mine recently:

1. I think possibly we all have the just falling into sleep without warning.

2. Each of us have a different sense of what our bodies are telling us. That is what I want to discuss and see if anyone else has similar experiences or thoughts. At times I get the strong awareness that I need to lay down and do - immediately seconds before sleep vivid unreal "dreams/pictures" appear, then poof in less than a minute I'm totally asleep. At other times when the Call to sleep comes I can actually feel increasing pressure on my brain telling me I'm "done" sleep time asap! If I don't respond the the pressure get increasing strong with a rapid cognitive decline. SO I do asap go lie down.

My observation and theory is possibly the brain is alarming for a "Sleep Cycle to begin". The recently discovered purpose of sleep, what I call "the regeneration cleansing cycle of toxins" building in the brain. Much like the regeneration cycle of a water softener system.

I know responding to these sensitivities is important and restorative at least for me.

It would be interesting to do blood and urine testing before and after...these types of events. Looking for chemical changes and antibodies changes.

Would any one have any thoughts or experience with this?

Although we may have a disease that offers many challenges, struggles, and misunderstanding. We are blessed by not having extreme pain 24/7 or some other constant affliction. Our disease is unique for each one of us and how we deal with it. That make us special people :)



PS: Winston Churchill: Never give up, no never!

-> Victory is to those who Believe Strongest and Longest - (not my quote) but from Special Forces ...Thank you Mike!

Never quit.


Hi Ranger -- Some really great thoughts in your discussion blog today. I wonder how the folks at Stanford are looking at these factors -- i.e., blood work, urine tests, etc. Dancermom actually met Dr. Mignot. Perhaps she can tell us all if she was examined by the doctor and whether any of these tests were done. Exciting news that many of us are responding well to a nasal spray with orexin.(hypocretin). Take care and thanks for sharing your theory. Coping

Hi, Ranger, I haven't had the pleasure of meeting Dr. Mignot. It's Julie Flygare who met him and wrote the article; I just posted it here on the site. Julie has a terrific blog called "REM Runner." I don't have narcolepsy myself but am volunteering on the site and posting articles I think would be useful or interesting to our members. One thing I find myself wondering about: does narcolepsy inspire creative insight? What do you think?

Dancer Mom,

Thank you for your response and great question!


Absolutely - I think narcolepsy inspires creative insight. I have a theory that one part of the Brain heavily affected, causes another part to go into overdrive. That is my experience and observation. In fact I'm very sure of it. Possibly is it some sort of a "compensation mechanism". I believe that handicaps in one area find people gifted in another....

Thank you again!!!


PS: We are a gifted group because "we can think out of the box" and experiment without funding or grant restrictions. Like I've said all along....A Biochemist team and access to world class laboratory facilities....Asking the right questions, test, review, test until you find the answer AND never quit... "This is not rocket science." I believe that the Human body is the most advanced biochemical lab in the universe...

I agree, Ranger. Each member of this group has an opportunity to contribute to advancing the world's understanding of narcolepsy and how to cope with it. And I see a lot of creative, thoughtful people here in this community. You can make a difference for the next generation.