Quick update then gone again

[MaxINTJ]

Update to the update.

I just had a call from the doctor's office and now they want to schedule an MSLT.

I just don't understand. I don't have narcolepsy, and my hypersomnia is the result of getting horrible sleep.

It's going to show night time arousals and awakenings and awful sleep (I have to have a PSG first). It will probably show that I can fall asleep easily during the day proving I have hypersomnia - but even if it does, it's what I already know!

I just don't understand the point of it except it will give them more data. It's not going to do a damn thing for my SDB though.

Max,

I totally understand where you are coming from.

But maybe the doc will reconsider her position about prescribing Nuvigil if you willingly cooperate with this. Maybe you can ask ahead of time and say something like this, "Doc, thank you for attempting to solve my problem. If it looks like my problems are of the hypersomnia and not narcolepsy kind, would you be willing to reconsider your position on prescribing nuvigil?"

Even if you think what I am suggesting is total BS, what do you have to lose by trying this?

They actually indicated that was part of the reason for doing it - to be able to prescribe Nuvigil under conditions where it is absolutely indicated. They are under scrutiny (as are most medical institutions) about prescribing drugs just because they feel like it. That just makes it harder for people who really need it to get it.

I am very willing to do the test - I just told them I don't have narcolepsy.

Now if I can get them to give me an ASV and get at least one of our kids to move out, I'll be on my way to recovery (I hope).

[kteague]

Thanks Pugsy for the synopsis. Max, have you been turned down for getting the test for UARS? Sounds like you are between a rock and a hard place. I've had an MSLT a few times. I felt they were mostly a waste of time because of course I was going to fall asleep during the day when my sleep at night was so poor. But there's always an outside chance it will reveal something that makes the picture clearer. I was one who could fall asleep at the blink of an eye but woke again almost as quickly, dozens upon dozens of times a night that I remembered, so I feel your frustration and know how awful that makes one feel. (My issue was limb movements.) Are you employed? That always complicates things when daytime functioning is required but reduction in stimulate intake or medication changes is needed to potentially give a clearer picture or to find a baseline. Sometimes it is only in the ruling out process that the remaining factors present a clearer picture. For one whose responsibilities won't allow a few weeks of slump time for weaning down some things, it's a tough situation because you can't know how good or bad your unstimulated brain might sleep. Hope you and your doctors are able to figure things out. Because this is a cpap board, you are going to get responses related to OSA. I'd like to suggest you start your posts with a brief intro line of something like: History: Not diagnosed with OSA. Suspect UARS. Many spontaneous arousals. As to insomnia, not sure of the technicalities of the term, but whether it's an inability to reach or to sustain sleep, some of the same efforts may be advised. Good luck in finding what will help you.

[MaxINTJ]

The test for UARS? Ha! They haven't even accepted UARS as a possibility (to my knowledge) - even though I bring it up frequently. Although, from what I've read, it is intrusive enough that I would probably not be able to tolerate it, let alone sleep with it. If they offered it, I would try though.

I'm not sure what they're looking for with the MSLT. It is supposedly for narcolepsy and idiopathic hypersomnia, but like you and anyone else with untreated SDB problems, our hypersomnia is definitely not idiopathic. I expect the PSG that day to show tons of arousals and awakenings (doh!) and the MSLT to show hypersomnia (doh!), so I have no clue why they would spend that much time coming to the same point as I am now.

And yes, I am employed and have a significant drive each way - hence my request for Nuvigil - since they are thus far unsuccessful at treating whatever arousal issue(s) I have.

I also keep pushing for an overnight with ASV or them just giving me an ASV, but I keep running into the "but you don't have central apnea" issue. Even though I told them the closest I got to reducing my arousals to a very very small number was with an ASV.

[AMESS]

Sorry MAx--call Trump..if nothing else he can put a tax on it.

Good wishes and better sleep next year. Keep at it.

[AMESS]

That coffee you are downing may be helping to keep you up. In the meantime--call Trump he can put a tax on it.

Better sleep in the New year. Stay With it.