Narcolepsy

[mouthbreather7]

This sight has been fantastic for me. I was diagnosed with mild sleep apnea about 7 months ago and was put on a machine. I am a mouthbreather and could never get a mask to seal. People on this sight helped me to find the right kind of tape that would stay on all night. I also became a sleepyhead user through the help of people on this sight. I bought my own machine and mask through the help of people on this sight and the savings have been great over a rental service. Now to my points: Point one: Sleepyhead software let me see what was happening to me, I was getting better. My last visit to my Dr. confirmed it. My sleep patterns were nearly normal with very few, if any episodes in the night. Thank you all!!!!! Point Two: My daytime sleepiness has increased over the last two months. I wake up feeling OK but after about two hours I feel very run down and feel like I need to sleep. It is far worse than what I felt before sleep apnea treatment. I have not talked to any of my Drs about it yet. FYI, I take numerous meds. Pravastatin and Zetia for choestrol, 4 different blood pressure meds ( high bp since my late 20's) , had two stents put in early last year after back surgery. Maybe 20 pounds overweight but very active, well used to be but always feel so tired now. I was just wondering if anyone else on here had anything like this happen to them. I fear it may be Narcolepsy but that is just a guess. I wonder about all the meds causing it also but worry the most about my heart. I am 53, Grandfather died at 48 from heart attack and father died at 52 from uncontrolled diabetes which led to a stroke. Any ideas, feedback. I know, see my Dr. I will but just wanting feedback. Seems like you can't go to a Dr. with this kind of a complaint without a barage of tests to follow. Thanks !

[MaxDarkside]

You and I may be in a similar situation. I'm 55, probably a long time OSA victim. After APAP cleared away the apneas, I was still VERY groggy during the day, it comes in waves at times. I seem to have sleep onset REM and if I take a nap during the day, and when I just go to sleep I often have weird dreams. I suspect I may have very mild narcolepsy. I talked to my sleep doctor about it. First, he had some sleep hygiene things for me to work on. I asked him, "OK, what if those don't help much?" to which his reply was to do a MSLT (multiple sleep latency test). "OK, then what?" He said he'd probably just put me on some narcolepsy drugs, but those are quite expensive and insurance companies fight to not pay them. Hmmm... I don't have much of a problem and that's not much of a solution. So, what I did was clean up my sleep hygiene a bit (no caffeine after x PM, cut back on Excendrin / analgesics for body aches... was having rebound particularly while sleeping when I could not take more) and I take a mild stimulating anti-histamine during the day to try to clear the grog. Sorta works, I'm a bit better, but I still have some waves of sleepiness, but I deal with it. Not much other choice for me I'm thinking.

[Jay Aitchsee]

Mouthbreather,
Controlling your OSA, although very good for you, does not necessarily correct your sleep architecture. You may not be obtaining the proper amount of REM or Deep sleep, leading to daytime sleepiness. Improper sleep architecture can be caused by a number of things, for example meds (which you mentioned), or pain, or even a condition such as PLMD.
A PSG is the usual method used to determine sleep architecture abnormality. You don't say what yours revealed beyond mild apnea, but it may be worth looking at your PSG for other factors which may be causing abnormal sleep.
OSA is pretty easy to control with CPAP. Abnormal sleep architecture is much more difficult to correct. Many of us on this forum do not obtain restful sleep as a result of poor sleep architecture or fragmented sleep, even though our apnea is well controlled.
Some of us find the Zeo useful to monitor our sleep and gain insight as to what our sleep stages look like while modifying factors which influence sleep - like meds.
Some use Provigil or Nuvigil to help with daytime sleepiness.
My advice is confer with your doctor to investigate why you don't feel rested. This may well call for another PSG. As Max said, sleep hygiene is very important and by improving that, you may be able to improve your quality of sleep.
Good luck.
Jay

[SleepTechTN]

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[MaxDarkside]

Your doctor sounds like a wise practitioner.

Thanks. He's a good doctor, we are both learning from each other. I particularly don't like any drugs that monkey with your central nervous system. I work on what is in my control; proper-minimal use of meds, eating right, getting the exercise I should, having a good attitude, and of course, sleep.

Attitude is one of the biggest success factors.