Vinny's therapy Thread 3rd sleep Doc

[Vinny V]

So after 3 months of terrible sleep i actually got 2 sessions of 3+ hours sleep. Almost 7 hours of sleep with an AHI of 0

But I think i could have slept more.. 5:30 this morning I was awaken to a horrible smell blowing out of my machine,,, it smelled like something was burning I panicked thinking that it was a fire in the house

No my humidifier was empty and smelling horrid.
The humidifier was full when I went to bed at 9 pm and now gone dry and smelling

Now I'm worried about it burning up at night when I'm asleep.

I have it set to 5 and I'm dry at that number.
I have a humidifier in my room and keep it at 50%RH..

You would think the humidifier would shut off when it ran out of water, my room humidifier does

[zonker]

So after 3 months of terrible sleep i actually got 2 sessions of 3+ hours sleep. Almost 7 hours of sleep with an AHI of 0

But I think i could have slept more.. 5:30 this morning I was awaken to a horrible smell blowing out of my machine,,, it smelled like something was burning I panicked thinking that it was a fire in the house

No my humidifier was empty and smelling horrid.
The humidifier was full when I went to bed at 9 pm and now gone dry and smelling

Now I'm worried about it burning up at night when I'm asleep.

I have it set to 5 and I'm dry at that number.
I have a humidifier in my room and keep it at 50%RH..

You would think the humidifier would shut off when it ran out of water, my room humidifier does

you know, auto shut off WOULD be a good thing. but alas it's not available now. you just have to juggle it out and hit what is right for you. lot's of experimentation.

BUT! look at you, getting that good sleep! other than the panic of waking up to a burning smell, how did you feel?

[Vinny V]

So after 3 months of terrible sleep i actually got 2 sessions of 3+ hours sleep. Almost 7 hours of sleep with an AHI of 0

But I think i could have slept more.. 5:30 this morning I was awaken to a horrible smell blowing out of my machine,,, it smelled like something was burning I panicked thinking that it was a fire in the house

No my humidifier was empty and smelling horrid.
The humidifier was full when I went to bed at 9 pm and now gone dry and smelling

Now I'm worried about it burning up at night when I'm asleep.

I have it set to 5 and I'm dry at that number.
I have a humidifier in my room and keep it at 50%RH..

You would think the humidifier would shut off when it ran out of water, my room humidifier does

you know, auto shut off WOULD be a good thing. but alas it's not available now. you just have to juggle it out and hit what is right for you. lot's of experimentation.

BUT! look at you, getting that good sleep! other than the panic of waking up to a burning smell, how did you feel?

Well can't get that smell out of my nose..

The more sleep I get the worse I feel...The last week I've been getting 4/5 hours of broken sleep..last night almost 7 hours but feel worse that the days I got less..

[Vinny V]

So I reached 100 days on cpap. And still feel not better and some days worse.

After much bureaucratic issue with my health insurance and moving , I finally saw my new sleep doctor..I went in with high expectations since they are affiliated with a major hospital/medical school.

I brought my machine in (like my previous doctor ) they said they are not equipped to read the SD card they will see if they can get a report from my DME.

I told the DR my ahi's are mostly .5 or less about I feel like crap and exhausted all the time she spent 30+ minutes listen and asking questions about my sleep and my health overall etc.
she said obviously my therapy is not working based on how I feel.

I brought both my sleep reports in for her to see.
she said she would loved to have seen the raw data behind the reports, i told her I had them and could email them to her
she dismissed me and suggested a new sleep study at the medical school with the purpose of getting me on a bi-pap machine to see how that does

But she said with my insurance and the fact my test showed an AHI of 10 which is not serious there is only a 50/50 chance it will be approved. If not we will see what
to do next


There is a 3 month wait for a test...( If I get approved) This is frustrating it's like starting over.. 100 days of cpap and I have to start over with anew machine ....my life has been on hold.. And now it's on hold longer


Edit to add: I'm thinking of getting a second opinion (if the insurance will let me ).....do you think it's worth the time to get one???

EDIT 2- I have an appointment with another sleep doctor for a second opinion in 2 weeks

[babydinosnoreless]

So I reached 100 days on cpap. And still feel not better and some days worse.

After much bureaucratic issue with my health insurance and moving , I finally saw my new sleep doctor..I went in with high expectations since they are affiliated with a major hospital/medical school.

I brought my machine in (like my previous doctor ) they said they are not equipped to read the SD card they will get a report from my DME.

I told the DR my ahi's are mostly .5 or less about I feel like crap and exhausted all the time she spent 30+ minutes listen and asking questions about my sleep and my health overall etc.
she said obviously my therapy is not working based on how I feel.

I brought both my sleep reports in for her to see.

She suggested a new sleep study at the medical school with the purpose of getting me on a bi-pap machine to see how that does
But she said with my insurance and the fact my test showed an AHI of 10 there is only a 50/50 chance it will be approved. If not we will see what to do next

There is a 3 month wait for a test...( If I get approved) This is frustrating it's like starting over.. 100 days of cpap and I have to start over with anew machine ....my life has been on hold.. And now it's on hold longer

That is frustrating. I hate the waiting involved with doctors it is always hurry up and wait !

[Pugsy]

So....how many hours of sleep are you averaging now?

Are those hours of sleep fragmented much? Still having trouble falling asleep and/or staying asleep and dealing with highly fragmented sleep?

Take any meds ...even OTC? If so, what?

[Vinny V]

So....how many hours of sleep are you averaging now?

Are those hours of sleep fragmented much? Still having trouble falling asleep and/or staying asleep and dealing with highly fragmented sleep?

Take any meds ...even OTC? If so, what?

I get between 6-7 hours, some days I get 6 straight but then I feel worse...
The sleep is fragmented I wake every 2-3 hours . And I tend to wake up hard during dreams breathing heavy and heart racing..2-3 times a week.

Meds: clonazepam .25 mgs in the am.
Vitamins. C, D, multivitamin, magnesium, fish oil.
Magnesium I take 1000mgs split am/pm all the others taken by lunch

I keep thinking of ways to improve my sleep quality, I wear ear plugs to drown out the birds in the morning so I can try to sleep later.
If I don't fall back to sleep right away I stopped watching tv on my tablet and got a app on my phone with water sounds to relax
I think it's helping a bit ..

I moved and I had to stop my PT and my chiropractor ( neck pain headaches) which maybe effecting my sleep some what
Just waiting for my new appointments to see if it helps

Plus I've had some stomach issues, lost 15 lbs that I couldn't afford to lose, lost a lot in my face.... this has caused my mask to leak a lot, now that my insurance is back the weight loss and stomach issues will be addressed ( hopefully)


Thanks

[Pugsy]

https://en.wikipedia.org/wiki/Clonazepam

read up on the side effects

Anything that disturbs your sleep...messes with how you will feel during the day.
If leaks wake you up (big or little) they are disturbing sleep quality and will mess with how you feel during the day.

Get your neck issues addressed as soon as you can...pain (even low level) will also mess with sleep quality and cause arousals (which you may nor may not remember but will mess with sleep quality). This one I have first hand experience with myself only the pain is in low back and pelvic area.

[Vinny V]

https://en.wikipedia.org/wiki/Clonazepam

read up on the side effects

Anything that disturbs your sleep...messes with how you will feel during the day.
If leaks wake you up (big or little) they are disturbing sleep quality and will mess with how you feel during the day.

Get your neck issues addressed as soon as you can...pain (even low level) will also mess with sleep quality and cause arousals (which you may nor may not remember but will mess with sleep quality). This one I have first hand experience with myself only the pain is in low back and pelvic area.

Yes now that my insurance is on I intend to work on the neck etc.

My thinking is the new Dr just wants me tested at her lab for the money.. In one breath she mentions wanting to see the raw data of the 2 tests and when i mention I can email it to her she tells me about getting another test, and needing a different type of machine..
she said my range of pressure was high and I may benefit from the bi level since breathing back against the pressure may be what is disturbing my sleep even if I don't notice .
But according to sleepy head I spend 90% of the time under 11.

Sometimes I wake-up during the night and it feels like the machine isn't on I move my mask just to see if it's working ( which it is)

I'm not going to tell the second Dr what the other told me... I want to see what they say..
Or do you think I would benefit from a bi level machine.. Or I'm wasting my time seeing another doctor

Much confusion......

[Pugsy]

I have no idea if you would benefit from a bilevel machine or not. Technically if you aren't having any issues with this machine and these pressures then probably not needed but would you like the ability to have a larger difference between inhale and exhale than you can get now with Flex exhale relief....dunno. You might like it and you might hate it. Liking it might mean better sleep quality...simply from a comfort aspect.
No complaints of anything that a bi level is designed to fix...so I dunno if you would sleep better or not.
Doesn't mean you wouldn't like it though. I think it's pretty sweet myself. Adjustments are available to make the breathing with the machine more match your own body's breathing rhythm...little things to make it even more comfortable.
More comfort might mean better quality sleep.....it's a maybe though.

[Vinny V]

I have no idea if you would benefit from a bilevel machine or not. Technically if you aren't having any issues with this machine and these pressures then probably not needed but would you like the ability to have a larger difference between inhale and exhale than you can get now with Flex exhale relief....dunno. You might like it and you might hate it. Liking it might mean better sleep quality...simply from a comfort aspect.
No complaints of anything that a bi level is designed to fix...so I dunno if you would sleep better or not.
Doesn't mean you wouldn't like it though. I think it's pretty sweet myself. Adjustments are available to make the breathing with the machine more match your own body's breathing rhythm...little things to make it even more comfortable.
More comfort might mean better quality sleep.....it's a maybe though.

I've tried the exhale relief , all the different types of settings....didn't care for it..I told The Dr I tired them she said the bi level is different...it's better..

Oh well...

Thanks.. I have to see what the other doctor says. In the coming weeks..

I think what also does not help is accidentally falling a sleep without the machine..
I fall asleep so fast without the machine that it happens from time to time
I'm so tired that when I get up to use the bathroom and disconnect the hose ..I've fallen back to sleep before I can reconnect the hose.
I've awoken holding the hose in my hand. .. I just fall asleep before I can snap it in. Lol

[Vinny V]

I have no idea if you would benefit from a bilevel machine or not. Technically if you aren't having any issues with this machine and these pressures then probably not needed but would you like the ability to have a larger difference between inhale and exhale than you can get now with Flex exhale relief....dunno. You might like it and you might hate it. Liking it might mean better sleep quality...simply from a comfort aspect.
No complaints of anything that a bi level is designed to fix...so I dunno if you would sleep better or not.
Doesn't mean you wouldn't like it though. I think it's pretty sweet myself. Adjustments are available to make the breathing with the machine more match your own body's breathing rhythm...little things to make it even more comfortable.
More comfort might mean better quality sleep.....it's a maybe though.

So now that my insurance is back I'm hitting up my new Dr's. My new primary care physician does not think sleep apnea is The cause of all my misery he says that with all that I'm complaining about can't possibly be from sleep apnea/lack of sleep.

He is proposing I might be having micro seizures in my sleep. I told him wouldn't the 2 sleep studies have caught it and the 24 hr eeg of my brain, anyway he is sending me to a neurologist ....that's his opinion on what's wrong with me...

Great more confusion....

[Pugsy]

I am sort of in agreement with your PCP...I don't think that your issues are solely caused by sleep apnea but I have no idea what the other potential culprits might be.

As for 2 sleep studies missing a "seizure"...wouldn't be impossible especially if you don't have them every night.....but I tend to be on the "I don't think so" side of that fence.
I think that something else is responsible for the crappy sleep quality besides sleep apnea or seizures.
Maybe there is an underlying UARS component going on here...maybe just a truckload of spontaneous arousals from something and we don't know what. We don't always remember those arousals but they sure mess with the sleep architecture and when that happens we feel like crap.
Or maybe something else going on physically that is totally unrelated to the airway at all.

[Vinny V]

I am sort of in agreement with your PCP...I don't think that your issues are solely caused by sleep apnea but I have no idea what the other potential culprits might be.

As for 2 sleep studies missing a "seizure"...wouldn't be impossible especially if you don't have them every night.....but I tend to be on the "I don't think so" side of that fence.
I think that something else is responsible for the crappy sleep quality besides sleep apnea or seizures.
Maybe there is an underlying UARS component going on here...maybe just a truckload of spontaneous arousals from something and we don't know what. We don't always remember those arousals but they sure mess with the sleep architecture and when that happens we feel like crap.
Or maybe something else going on physically that is totally unrelated to the airway at all.

Actually the first sleep study showed that I had 51 arousals with 25 associated apnea/ hypopneas . And 26 arousal that were classified as spontaneous. And nothing else.

My titration study had 112 arousal, 8 hyponeas and 87 spontaneous arousals. Both tests had no RERA's ( but now I have lots of rera's)

A sleep study I had 4 years ago had had 37 arousals, 0 hypopnea, 0 apnea no leg no snore but 16 RERA's and 21 spontaneous arousals

Something is arousing me......And not in a good way..

I always had issues with sleep I could do 8-9 10 hours sleep and still feel tired and terrible but my fragmented sleep issues didn't start until I was out on a beta blocker worse 7 months ever...they interfere with rem sleep.

Even harder to get off of it it's been 6 months and I think There still affecting me

[Vinny V]

I have an interesting new problem

I go to sleep with the machine on but wake up during the night to find The the machine off and the hose unhooked from the mask, sometimes it's just laying on the bed other times it's hooked on the bedside hook I put up for it.

I find that I have been sleeping between 1 to 4 hours with the machine off, the thing is I have no recollection of doing it..5 nights in a row so far

In the past 100+ days this is the first time this has happened.

I can't figure out how to stop it

any advice