Finally Some Good News

After having experienced only minor improvements to my daily energy levels after being on cpap, my sleep doctor ordered another PSG for me only with the addition of an MSLT test. After being very polite and kind to my sleep study tech and getting her to talk a bit, she hypothesized that I might have hypersomnia. The test was supposed to be for narcelepsy, but the tech speculated that it was hypersomnia. It's bad to know that I have yet another problem to fix, but good to know that I wasn't crazy to still feel tired after cpap treatment for more than 8 months. Sounds like I may be taking something like Provigil soon in addition to my cpap therapy. Anyone out there also have hypersomnia? What was done for it, and how much can life be improved? Will all the daily walks that I've had finally improve my metabolism?!

Jay,

Did the tech make her remarks after the MSLT? If so, it probably means that you slept more and sooner than normal in the naps, but did not reach REM, which is one checkpoint in diagnosing Narcolepsy. If you get the detailed report on the study you'll know more. If your naps had arousals by either apnea or limb movements, it could be that without that interference you would have reached REM. Who knows?

I was already in the middle of this message before I thought to look back and see what equipment you use etc. Hopefully you are able to monitor your data and are sure that your apnea treatment is indeed therapeutic.

Best wishes in getting the answers you need to be able to go forward and feel better. I know that there is at least one person on here with hypersomnia, but I'll let them speak for themself, since I think I got that info in chat. You could search the board to see if it's been discussed, but you might be better served by not putting a lot of energy into a "maybe".
Your test results will direct you how to best expend your energy.

Kathy

Thanks for the reply. Yeah, she mentioned hypersomnia after my MSLT while she was taking off all of my electrodes. I asked her how it is usually treated, and she said it's treated with Provigil. She said she didn't know the specific results from my PSG the previous night, only that my pressure was changed from 14 to 17, so that in itself is fairly significant though I saw it coming based on the data on my machine. But even today I still feel the same with the change in pressure. Last night I read about hypersomnia in the classification of sleep disorders book, and it sounded very much like me. I don't suspect narcelepsy because I don't get much REM sleep, as opposed to narcoleptics going QUICKLY into REM sleep. My PSG prior to this one indicated that I spent more than 90% of my night in Phase 1 and 2 of sleep, never reaching 3 or 4, and only 8% in REM sleep.

kteague wrote:Jay,

Did the tech make her remarks after the MSLT? If so, it probably means that you slept more and sooner than normal in the naps, but did not reach REM, which is one checkpoint in diagnosing Narcolepsy. If you get the detailed report on the study you'll know more. If your naps had arousals by either apnea or limb movements, it could be that without that interference you would have reached REM. Who knows?

I was already in the middle of this message before I thought to look back and see what equipment you use etc. Hopefully you are able to monitor your data and are sure that your apnea treatment is indeed therapeutic.

Best wishes in getting the answers you need to be able to go forward and feel better. I know that there is at least one person on here with hypersomnia, but I'll let them speak for themself, since I think I got that info in chat. You could search the board to see if it's been discussed, but you might be better served by not putting a lot of energy into a "maybe".
Your test results will direct you how to best expend your energy.

Kathy

Jay, I guess you've already checked into side effects of meds you might be on for other health problems (if any.)

how long do you sleep at night?
what medications are you taking?

http://www.ninds.nih.gov/disorders/hype ... somnia.htm

Personally, I would never have a MLST. Yes it may diagnose narcolepsy but why would you want that diagnosis? Makes you virtually uninsurable do you need confirmation of that?

I would say yep, I think you are right with hypersomnia and take the provigil (same medicine you would take with a positive MLST and narcolepsy) but without all the bad stigma that goes with it (if you catch my drift).

I sleep for about 7-8 hours a night. I don't take any medicines at all. I agreed to an MLST because I didn't know that narcolepsy diagnosis would leave me "virtually uninsurable." If I had known that I wouldn't have. Though after reading the clinical definition of narcolepsy, I'm 99% sure that I don't have it. As I stated in a previous post, narcoleptics go into REM sleep RAPIDLY, while I suffer from an inability to get much in the way of REM sleep, so that eliminates me from narcolepsy and puts me right into the hypersomnia camp. Having read a lot about hypersomnia now, it fits me to a "t." Still tired after a full night of sleep, sleep for more than 8 hours when no alarm is on to wake me up (weekends I sleep for 10 hours), lots of daily microsleeps, ability to fall asleep daily within 5-10 minutes, heightened ability to fall asleep when reading, in a movie theatre, or driving long distances, etc.. It all seems to fit.

Snoredog wrote:how long do you sleep at night?
what medications are you taking?

http://www.ninds.nih.gov/disorders/hype ... somnia.htm

Personally, I would never have a MLST. Yes it may diagnose narcolepsy but why would you want that diagnosis? Makes you virtually uninsurable do you need confirmation of that?

I would say yep, I think you are right with hypersomnia and take the provigil (same medicine you would take with a positive MLST and narcolepsy) but without all the bad stigma that goes with it (if you catch my drift).

Jay,

I started taking Provigil a few weeks ago. Mainly in order to save my job due to EDS and falling asleep while typing! I couldn't wait for my CPAP to come since my job was in jeopardy. It did help. I wouldn't be sleepy until around 2:30 as opposed to all day. But, that was also w/o CPAP. I haven't taken it since Thursday since I got my machine and I only work Monday thru Thursday so I don't know if it will help even more. My only caveat is that it is EXPENSIVE -- about $300 w/o insurance! I know that they can also prescribe Ritalin for Hypersomnia and Ritalin has a generic available. My kids are both on it and I know how much less it is. Plus with my mail order script program I get a 3 month supply for $5!!!!! I'm taking a wait-and-see attitude on whether or not to continue Provigil due to the addictive nature of it (Ritalin is also addictive BTW) to see if the CPAP treatment helps.

So far, I've still been tired during the day and taking naps both Friday and Saturday (2 on Saturday). Even after getting 8+ hours on CPAP with an AHI of 2.8 and 2.3. I understand it takes a while for treatment to catch up with all that sleep deprivation we've suffered over the years so I'm still hoping that the ESD will correct itself without meds!

Linda

lpady,
I hope you're using the xpap while napping!

Brenda