Site and Health Update #7
Aug. 26, 2003 (last modified, 8-28-03)

 

 

Health Update

 

When I wake in the morning,
I want to blow into pieces.
I want more than just ok, more than just ok.
When I'm up with the sunrise
I want more than just the blue skies.
I want more than just ok, more than just ok.

I'm not giving up, giving up,
not giving up
... now.
I'm not giving up, giving up,
not backing
... down.

More than "fine," more than bent on getting by.
More than "fine," more than just ok....

More than oceans away from the dawn.
More than oceans away from the dawn...

-- More Than Fine, "The Beautiful Letdown," Switchfoot

 

I can relate to these sentiments, except I'd settle for ok or fine at this point. :-)

 

(previous health updates below for those just tuning in)

 

Well, this "Excessive Daytime Sleepiness" (EDS) is getting old.

I finally had a Multiple Sleep Latency Test (MSLT) in June to try and quantify my daytime sleepiness level. An MSLT is where you try sleeping for 20 minutes every 2 hours starting at 8 AM after a normal night's sleep. Electrodes are attached to your head to measure brainwave activity (to see when you sleep, what stages of sleep you go into, etc.). I slept every time (4X) with a sleep latency (time from lights out to sleep) of 7.4 minutes - even with the wires and do-dads hooked up to my cranium. Normal time to fall asleep is 10-12 minutes or more and Narcolepsy territory is 5 minutes. Most people can't take naps on demand every two hours, but I can. So, as I said before, I'm still half-asleep during the day, despite being 100% compliant with using a CPAP machine at night for Sleep Apnea. I guess for you optimists out there I'm not half-asleep but half-awake. :-)

Oceans away from the dawn
My Pulmonologist prescribed Provigil for my EDS. It took a while to get my insurance to approve of it. I started taking a half dose in the morning (100mg) for three days to see how I reacted to the drug. First day was great. I had lots of energy so I went for a jog and felt I could jog all day, but it was noon and I hadn't eaten anything yet so I decided to stop. :-) Drug wore off by 2-4 PM and my symptoms of fatigue, sleepiness, fuzzy-headedness, inability to concentrate, etc. returned. About the same thing next day. Yesterday was the 3rd and final day at 100mg. I was spacey and tired all day. As I told a person at work, "I haven't been this spacy since the '70's."

Today was my first day at 200mg. I went to work and felt like I was going to pass-out. I was fuzzy-headed (more than usual!) and felt "woozy" like my blood pessure was dropping fast and I was about to pass out. I left work and went to the local Clinic and saw my Pulmonologist before he started seeing his scheduled patients. We decided to go to 100mg of Provigil in the morning and 100mg at lunch to get the full dose tomorrow and see how I do, since I seemed to handle 100mg at a time ok and it wore off by the afternoon. If I react badly to it again, he'll prescribe Ritalin. If I do ok, I'll try Provigil at two 100mg doses twice daily for two weeks and see him again. If it doesn't help, I'll try the Ritalin I guess.

After trying everything I can think of to get the CPAP treatment to end my EDS, it seems aparent I have something else going on besides sleep apnea. My Pulmonologist suspects the few people like me that don't respond to CPAP for Apnea have a second sleep disorder that is currently unrecognized. People like me are usually put in a left-over bin called "Idiopathic Hypersomnia" which simply means I have excessive sleepiness during the day and they don't know why ("Idiopathic" means a disorder of unknown cause). I still wake up unrefreshed and feel like I didn't sleep at all. It always feels like it's 3 AM. Right now, I'm typing this before noon after seeing my Pulmonologist after my reaction to 200mg of Provigil and I'm getting very tired and sleepy and my brain is shutting down. Doesn't look like Provigil is going to work, but then again, it's been a long day already. I'll give it one more day at least.

My time and energy are currently going to my work and family (wife and kids). I am writing a manual for my wife about myself and our relationship (every wife and husband should come with an operator's manual on their care and proper use) and am also working on some personal "issues" the stress of all this has brought out. Our major house remodel is officially done, though we still have a lot to do such as move everything back in, reorganize, paint, etc. This will take a couple months at least in itself.

As a result, I still don't have much time or energy left over to work on this site. I may not have time to work on updating this site with new material by myself and the site's critics until next year. You can still send responses to this site's material, but it may be a few months before it's posted.

I appreciate your prayers, encouragement, and suggestions.

 

Ken

email: nospamplease@premier1.net
(replace "nospamplease" with "raines" to help me cut down on those email trollers.)

 

 

 

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Previous health updates:

Update #6 May 10, 2003

Update #5 Problems, a New CPAP Pressure, and MSLT Delayed to April March 14

Update #4 I Finally Got a CPAP! Feb. 8, 2003

Update #3 My Home APAP Test and Sleep Study Results Nov. 15, 2002

Update #2 My sleep study Sept. 10, 2002

Update #1 My Health August 10, 2002

 

 

Links

Hypersomnia

Idiopathic Hypersomnolence Talk About Sleep article on daytime hypersomnolence

Idiopathic Hypersomnia

 

Provigil

Provigil

A Pill to Stretch Your Day LA Times article on Provigil's possible other uses besides hypersomnolence from sleep disorders.