Low AHI, Nuvigil and yet still tired HELP Plz

[TheTwinsMom1]

I started CPAP on March 29th. I have been 100% compliant since then. I was still having excessive sleepiness many months later so at the end of Sept I had the MSLT done. I fell asleep during all five naps and my doctor was amazed. We also did another titration that night and switched my apap settings. He also started me on Nuvigil 150mg just once a day for now.

I noticed since the pressure was changed on my apap I am sleeping better and dreaming more. My ahi is always way less than 5 and usually less than 1. My average 95% pressure for the last 2 months is 13.3. So everything looks great. The nuvigil is working pretty well so far meaning, i feel way more awake then I have in the past. However, the last few days I am now yawning and tired again. Checked my machine data and all looks fine there.

I am not sure what to even do at this point. Is it possible for people to just have EDS (Extreme Daytime Sleepiness) for no apparent reason? I do wear my Pulse Ox about one night a week and do not really have any desats either.

I am wondering if I should do a trial of switching my apap to cpap and run it at 13.5 for several weeks and see if that helps any. My leak rate is almost always 0 also.

I am just sick of being tired. I am also averaging more than 8 hours of sleep a night, with most nights being closer to 9 hours. My doctor said we will probably add a second dose of nuvigil but right now I am tired while taking the nuvigil.

Any suggestions?

[SleepingUgly]

How much of a change did your doctor make in your APAP settings after the MSLT?

Did you go into REM on any of the MSLT naps?

[TheTwinsMom1]

We changed the machine from 10-20 to 12-20.

I did not hit rem during any of the naps during the mslt. I feel asleep in under 10 minutes for most naps and under 15 minutes for one nap. Then they woke me up.

[Emilia]

Have you had other possibilities checked like thyroid or your vitamin D3 levels? I still don't have much energy during the day, but I learned my D3 was super low. I am now taking tons of that to try to get into a mid-normal range (60-80 per doc). I also take Synthroid, but my TSH is fine as I just had it checked. My next D3 test is in late Dec. so we will be hoping for improvement.

I hope you can get to the bottom of your sleepiness..... you've been a trouper to persevere this long. Kudos to you for your 100% compliance!!

Keep us posted......

[TheTwinsMom1]

I have low thyroid however, it is well controlled with medications.

I had both my Thyroid and my D levels checked last month and both were normal. I supplement my D every day. Ugh, I think I am just destined to be tired forever.

[SleepingUgly]

Is the Nuvigil 150mg helping, just not lasting long enough? Or is it not helping at all?

[TheTwinsMom1]

It seems to be helping some. It was working better last week. Right now it wears off about Noon which is what my doctor said it would probably do. However, the last two or three days I have spent most of the day yawning and today I almost laid down for a nap

[SleepingUgly]

You could try Nuvigil 250mg and see if that helps (150mg did nothing for me). I did not find that Nuvigil lasted all day, even though it's supposed to last longer than Provigil. With Provigil I dosed more than once a day (and not as often as I really needed to). Because Nuvigil was new and my doctors didn't know much about it, I was afraid to dose more than once a day lest it cause insomnia. I had trouble with Nuvigil causing dry eyes, so I went back to Provigil.

[TheTwinsMom1]

Thanks for the help. I am gonna give my sleep center a call and let them know it's not working well and I can't wait until the entire month is up. Have to work lol

[Tielman]

Thanks for the help. I am gonna give my sleep center a call and let them know it's not working well and I can't wait until the entire month is up. Have to work lol

I have been in a similar situation (and still am). What has changed for me the situation was purchasing a 9" sleep wedge and using it to sleep with. Apparently I have Silent GERD (no real symptoms other than burping) and it's been causing issues with my sleep. I only had 1 day of bad sleep in the last 8 days, and my AHI has dropped 1 full point (to the low 3s). I had a couple of days at 4 and 5 (non consecutive) without major daytime sleep issues.

I'm due to see my DR on Friday (annual physical) and will bring this up.

Hope you figure it out!!