Quick update then gone again

[MaxINTJ]

NOTHING has changed.

Sleep lab thought 6 pressure would work. 4 horrible nights at 6 and they decided 9 would be better. *Slight* improvement, still tons of flags. 12 and 15 had already been tried so waiting for the next piece of crap they throw at the wall.

I am consistently getting less than half the restorative sleep I should be getting and my PCP still will not prescribe Nuvigil. The PA has been useless, so now I'm waiting to file an appeal with the Chief of Staff.

Doesn't seem to matter that I have a long drive everyday, work a full day, and am constantly adding to my sleep deficit. Having to drink 10-12 cups of coffee just to stay awake most of the day - but they don't care.

For some reason my PCP thinks psychobabble is the cure for secondary hypersomnia, so I have asked her to cite data showing behavioral health being proven to be a successful treatment for it. So far, I have gotten no such information, nor can I find any.

Looks like this nightmare is going to continue well into 2018. Some New Year I'm gonna have...

Bah humbug.

[LSAT]

NOTHING has changed.

Sleep lab thought 6 pressure would work. 4 horrible nights at 6 and they decided 9 would be better. *Slight* improvement, still tons of flags. 12 and 15 had already been tried so waiting for the next piece of crap they throw at the wall.

I am consistently getting less than half the restorative sleep I should be getting and my PCP still will not prescribe Nuvigil. The PA has been useless, so now I'm waiting to file an appeal with the Chief of Staff.

Doesn't seem to matter that I have a long drive everyday, work a full day, and am constantly adding to my sleep deficit. Having to drink 10-12 cups of coffee just to stay awake most of the day - but they don't care.

For some reason my PCP thinks psychobabble is the cure for secondary hypersomnia, so I have asked her to cite data showing behavioral health being proven to be a successful treatment for it. So far, I have gotten no such information, nor can I find any.

Looks like this nightmare is going to continue well into 2018. Some New Year I'm gonna have...

Bah humbug.

General Kelly ????

[chunkyfrog]

Resistance is futile.
And counter-productive.
Nothing will work until you let it.

[kteague]

Sleep lab thought 6 pressure would work. 4 horrible nights at 6 and they decided 9 would be better. *Slight* improvement, still tons of flags. 12 and 15 had already been tried so waiting for the next piece of crap they throw at the wall.

For some reason my PCP thinks psychobabble is the cure for secondary hypersomnia, so I have asked her to cite data showing behavioral health being proven to be a successful treatment for it. So far, I have gotten no such information, nor can I find any.

Looks like this nightmare is going to continue well into 2018. Some New Year I'm gonna have...

Bah humbug.

Why are random numbers being tried when the technology is available to methodically derive an optimal setting? I don't know what all you've already done with guidance here, but randomness is not the preferred path to success. You have a couple different issues here. First is effectiveness of therapy. Regardless of your insomnia or how you feel, find the pressure settings and mask that best control your apneas without causing problems. As long as your poor sleep isn't caused by ill fitting equipment, air in the belly, pressure fluctuations, or centrals, then leave the settings alone once optimized no matter how you sleep or feel. Deal with your sleep as a separate issue. The brain is a creature of habit. Yours has a habit of broken sleep. The best you can do for yourself is consistently provide your brain with an environment conducive for sleep and allow it time to develop new habits. I'm not just lecturing, I am speaking from experience. I had a long and hard fought battle relearning how to sleep, but it did happen.

Regarding behavioral therapy - Just a little light reading for you. What have you got to lose?
https://www.ncbi.nlm.nih.gov/pubmed/29157586
https://www.ncbi.nlm.nih.gov/pubmed/24892895
https://www.ncbi.nlm.nih.gov/pubmed/22945187
https://www.ncbi.nlm.nih.gov/pubmed/15560773

[luvsbluberries]

Having to drink 10-12 cups of coffee just to stay awake most of the day

Don't forget the benefits of good sleep hygiene. That coffee could be costing you precious restorative sleep.

[bwexler]

Your statement about equipment,what does it matter?
It matters a lot if you actually want to get meaningful advice here.
The folks here collectively have tens or even hundreds of thousands of hours of experience with all sorts of equipment. Many have been through what you are going through.
Your providers have been paid and have lost patience and interest in your problems.

If you have an auto CPAP we can provide guidance on proper settings.
The mask is the hard part. A decent machine with full data will tell you about leaks. You must either adjust the mask to stop the leaks or change to a mask that works well for you.
This is not rocket science, but it takes work and persistence.
Medical professionals are not always the best source for that help.

If you have come here for pity, this is the wrong place. If you want help engage us calmly and provide the information we need to help you.

[TedVPAP]

NOTHING has changed.

Sleep lab thought 6 pressure would work. 4 horrible nights at 6 and they decided 9 would be better. *Slight* improvement, still tons of flags. 12 and 15 had already been tried so waiting for the next piece of crap they throw at the wall.

I am consistently getting less than half the restorative sleep I should be getting and my PCP still will not prescribe Nuvigil. The PA has been useless, so now I'm waiting to file an appeal with the Chief of Staff.

Doesn't seem to matter that I have a long drive everyday, work a full day, and am constantly adding to my sleep deficit. Having to drink 10-12 cups of coffee just to stay awake most of the day - but they don't care.

For some reason my PCP thinks psychobabble is the cure for secondary hypersomnia, so I have asked her to cite data showing behavioral health being proven to be a successful treatment for it. So far, I have gotten no such information, nor can I find any.

Looks like this nightmare is going to continue well into 2018. Some New Year I'm gonna have...

Bah humbug.

Not a surprise - I think this is what you expected. Time to start developing plan B.
Thanks for the update.

[luvsbluberries]

Looks like your PCP is spot on for recommending behavioral therapy:

Proper sleep hygiene is the most important behavioral change that must be implemented. This includes setting a regular sleeping schedule, having a sleeping environment that is well suited to quality sleep, a comfortable bed and pillow, and avoiding caffeine or other stimulants near bedtime.

When you consider the half-life of caffeine, your 10-12 cups of coffee throughout the day has got to be affecting your sleep quality. Plus, depending on your individual body chemistry/metabolism, it could be in your system even longer than you realize.

It's a self-fulfilling double-bind; use a stimulant to stay awake, and it interferes with the quality of sleep that you need. I realize your issues are more complex than that. But still.

[MaxINTJ]

Regarding behavioral therapy - Just a little light reading for you. What have you got to lose?
https://www.ncbi.nlm.nih.gov/pubmed/29157586
https://www.ncbi.nlm.nih.gov/pubmed/24892895
https://www.ncbi.nlm.nih.gov/pubmed/22945187
https://www.ncbi.nlm.nih.gov/pubmed/15560773

I do not have insomnia. My sleep onset is very quick whether going to sleep or waking in the night and going back to sleep. Most night time wakings I don't even remember.

[MaxINTJ]

Your statement about equipment,what does it matter?
It matters a lot if you actually want to get meaningful advice here.
The folks here collectively have tens or even hundreds of thousands of hours of experience with all sorts of equipment. Many have been through what you are going through.
Your providers have been paid and have lost patience and interest in your problems.

If you have an auto CPAP we can provide guidance on proper settings.
The mask is the hard part. A decent machine with full data will tell you about leaks. You must either adjust the mask to stop the leaks or change to a mask that works well for you.
This is not rocket science, but it takes work and persistence.
Medical professionals are not always the best source for that help.

If you have come here for pity, this is the wrong place. If you want help engage us calmly and provide the information we need to help you.

The equipment has not, and is not currently working - my sleep data is awful. The sleep lab knows it, and so does Pugsy - she's seen it.

[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.

[Julie]

You always know all the answers prior to trying things... then come here and rant and rant and rant.

Haven't you heard that repeating the same thing over and over is a sign of insanity if nothing improves?

[Pugsy]

Quick note folks.

Max doesn't have garden variety OSA...his in lab sleep study showed AHI of less than 1.0 but tons of arousals. Some related to breathing maybe and a lot just spontaneous and no known reason.
So for the arousals related to breathing we were thinking maybe UARS...the spontaneous ones we have no idea.
Hence the trial with cpap. The UARS idea...that's a maybe since he hasn't had a sleep study designed to look for UARS with Pes device.

His sleep quality is crap from the arousals and he doesn't remember most of them. So its not a typical insomnia situation. He doesn't have much trouble falling asleep or staying asleep per se.

When using cpap and SleepyHead...the bulk of his AHI is SWJ and easily seen on the flow rate. So it's not OSA related AHI but instead a SWJ related AHI which means with the large number of arousals he gets a lot of false positive flagging going on.

Even with cpap helping out (somewhat) on the breathing related arousals there were still a lot of spontaneous arousals happening.....so still crappy sleep quality.
His best results in terms of breathing arousal reductions was with the ASV trial. CPAP helped a little but not enough to really make much of a difference in quality of life during the day which is in the toilet due to the poor sleep quality.
Using ASV brought on other problems with mask and pressures that the ASV wanted to use. Plus the ASV was borrowed and it's unlikely the VA will give him an ASV to use long enough to get the mask/pressure issues resolved.

Even with ASV reducing the breathing related arousals there was still the spontaneous arousals for which we don't have a fix because we don't know the cause plus the mask/pressure related arousals....or the fact that wife's sleep was disturbed with preferred mask. He slept decently but wife didn't with the nasal mask but had air escape out his mouth when the machine went to the higher pressures. Going to a full face mask presented it's own set of issues causing arousals. Damned if you do and damned if you don't situation here.

CPAP/APAP/ASV isn't going to fix the spontaneous arousals because they aren't related to a sleep disordered breathing issue.
He doesn't have OSA...that's a for sure thing.
At this point even if the sleep disordered breathing arousals were totally eliminated then there's still the issue with the spontaneous arousals that need to be met and it's real hard to fix a problem if you don't know what the problem is.

His best chance of maybe success for the breathing related arousal issues were probably the ASV and use a nasal mask and sleep in another bedroom so wife's sleep wasn't disturbed but only so many bedrooms in the house and all occupied by kids.
Even then I don't know if reducing the breathing related arousals would make that much of an impact on how he feels during the day due to the spontaneous arousals that we can't seem to fix.
Since using a full face mask caused more problems in terms of sleep quality than it fixed...I think that the little bit of mouth leaking issues with the nasal mask was a lesser evil. If it didn't wake the wife up and have her poke him to wake him up...it would have been most likely the better chance at better sleep quality in the long run.
We don't have to worry about OSA here....just sleep quality.
Which is too bad because OSA is easier to fix than sleep quality.

[MaxINTJ]

You always know all the answers prior to trying things... then come here and rant and rant and rant.

Haven't you heard that repeating the same thing over and over is a sign of insanity if nothing improves?

You seem to be woefully unaware of everything I have tried and what the doctors have tried. They told me the MSLT is only very RARELY done - it means they're out of answers as well. Maybe they will consider UARS more seriously after this.

[49er]

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?