Need Advice - Exhausted Again

[Miss Emerita]

There's a piece of the timeline I don't understand, and it might be important. What order did these things happen in:

* Your sleep test

* Your use of opiod drugs

* Your treatment with Subutex.

Which was first, which second, and which third?

I didn't want this to get lost in the shuffle. Sean, can you clarify?

[sean4123]

There's a piece of the timeline I don't understand, and it might be important. What order did these things happen in:

* Your sleep test

* Your use of opiod drugs

* Your treatment with Subutex.

Which was first, which second, and which third?

Use first of opiates after major surgery for pain and began abusing in 20s.

Subutex Treatment second (for years with no issue of sleep)

Sleep test after major fatigue years later.

[zonker]

VPAP Adapt.

do you still have this machine? sorry if you've answered this before.

When someone acts as if I dont understand that breathing is a core tenant to staying alive, I see that as being rude and condescending. I'm not stupid nor lacking the motivation for help at this point, I just relied on my sleep doc more than I did the board when I came for advice on and off. Also people need to understand that sleep and lack of it can hurt motivation in general.

in that resonse of hers, i take that more of a joke rather than an attack on you.

we certainly understand lack of sleep and all it entails. we've been there ourselves which is why we're here to try to help.

one of the absolute core principals of this forum, as i see it, is that when someone comes here for help, the people on the forum need to have data. in other words, facts and figures. each of us on this sleep apnea journey have different needs in order to achieve basically the same goals. the forum needs to see just what adjustments need to be made on a machine so that it works best FOR YOU. those settings will not be the same for me as for you.

the first step is that we need to get data from the machine. we see that one of those machines is a resmed escape, which won't help as there is not data to be gathered. but you said that you couldn't sleep with it. that's because it gave you gas. this is not uncommon. i've suffered the same.

so do you still have the other machines? again, sorry if you've answered this already. what i'm hoping is that you DO have one of them. and i also hope that these machines can gather the data the forum members crave.

please don't worry about answering each question with a quote. as that would be nice, we need to get you out of your exhaustion before we can start teaching you something new.

good luck!

[Miss Emerita]

Thanks for clarifying the timeline, Sean. So the sleep study came after you were on the Subutex. Did it show a lot of centrals? I think the answer is no, but I want to be sure.

Does the sleep doctor know you're being treated with Subutex? Have you talked with the doctor who prescribed Subutex about how to gradually wean yourself off it?

If you're having a lot of centrals (wish I knew how many per hour -- do you know?), then your best bet would probably be an ASV machine. That stands for Adaptive Servo-Ventilation. I recommend that you talk with your doctor about getting one. Ideally you'll get a ResMed ASV machine, which will allow you to see a lot of data. And the data might help us help you.

Some people have to work to get the hang of breathing comfortably with an ASV machine, but there are plenty of people here who can help you with that, if your doctor doesn't.

One other thing. I'm struck by your saying you got a sleep study because you started having major fatigue. Did your regular doctor do any tests to see whether there were other things going on in your body that might make you fatigued? For example, tests for thyroid function, testosterone levels, anemia, autoimmune disease, deficiencies of vitamins D, B6, and B12.

[sean4123]

Thanks for clarifying the timeline, Sean. So the sleep study came after you were on the Subutex. Did it show a lot of centrals? I think the answer is no, but I want to be sure.

Does the sleep doctor know you're being treated with Subutex? Have you talked with the doctor who prescribed Subutex about how to gradually wean yourself off it?

If you're having a lot of centrals (wish I knew how many per hour -- do you know?), then your best bet would probably be an ASV machine. That stands for Adaptive Servo-Ventilation. I recommend that you talk with your doctor about getting one. Ideally you'll get a ResMed ASV machine, which will allow you to see a lot of data. And the data might help us help you.

Some people have to work to get the hang of breathing comfortably with an ASV machine, but there are plenty of people here who can help you with that, if your doctor doesn't.

One other thing. I'm struck by your saying you got a sleep study because you started having major fatigue. Did your regular doctor do any tests to see whether there were other things going on in your body that might make you fatigued? For example, tests for thyroid function, testosterone levels, anemia, autoimmune disease, deficiencies of vitamins D, B6, and B12.

Yes all doctors know about the Subutex and simply just tell me to come off of it. I'm currently down to 0.5 mg (about 1/32nd of a dose vs. what most are on) but it is still very hard to full jump off due to fatigue and the sleep stuff. I'm not sure if its directly related as the sleep issue popped up much later and isn't a common issue with this med and certainly not the lower dose i'm on, but I digress. I'd love to fully jump off, but without getting proper sleep its been very hard to also try and come off a med that gives me motivation after I take it. It works on the same receptors as many antidepressants. I've attempted to wean off and am kind of stuck at the bottom tier of where people tend to jump off completely.

The ASV machine is definitely an option, however i'm not positive I have central apnea to the degree that a machine like this is necessary. The first study showed no centrals (without being hooked to a machine) and only the rental/take home machine showed centrals but with very little usage. The doctor didn't seem to want to really dive into my situation further than the most basic of information. The takehome showed Centrals, so now I must have complex sleep apnea.

I've had many many other tests for fatigue and most all have come back normal outside of Epstein Barr Virus in 2016 and defficiecy in Vitamin D which I now take and still the fatigue persists.

Now I wake up every 3-4 hours consistenly and many times hear air gurgling through my stomach. Only GasX and Omeprazole seem to help and i'm now reliant on those to sleep.

I've tried to sleep with my new BiPpap machine the other night, for likely the 20th attempt and I simply cannot fall asleep for more than an in and out state and always end up going back to the Escape. I'm not sure if I'm just losing my mind or if this is a common issue where one machine feels different from the other.

Anyhow, it sounds like I need to push myself to adapt to a new machine so I can get data on here.

Thank you for your help!

[Miss Emerita]

One way to try to adapt to your new bilevel machine is to use it outside your bedroom during the day or evening while you watch TV, read, or use your devices. Maybe you could give that a try?

Also, could you remind me of the make and model of this new machine that you're trying to get used to? And do you know the pressure settings you have on it?

Hats off to you for reducing your Subutex dosage. I did some googling, and I see that there's some evidence that Subutex can disturb sleep and sleep breathing. I don't know whether that would be true at the low dose you're taking now.

Did you start taking any new medications around the time you began to feel fatigue? Or stop any old ones? Any other changes that might be relevant, e.g., drinking habits?

[sean4123]

One way to try to adapt to your new bilevel machine is to use it outside your bedroom during the day or evening while you watch TV, read, or use your devices. Maybe you could give that a try?

Also, could you remind me of the make and model of this new machine that you're trying to get used to? And do you know the pressure settings you have on it?

Hats off to you for reducing your Subutex dosage. I did some googling, and I see that there's some evidence that Subutex can disturb sleep and sleep breathing. I don't know whether that would be true at the low dose you're taking now.

Did you start taking any new medications around the time you began to feel fatigue? Or stop any old ones? Any other changes that might be relevant, e.g., drinking habits?

Yes thats a good idea, i'll try that. I continue to wake up 3 hours into sleep and feel full of air so i'm starting to worry that this fragmented sleep is really hurting my health. I'm self employed and haven't have any motivation to work lately so something needs to change.

The newer machine I can't seem to adjust to is the ResMed AirSense10. I have no clue why, but I just can't seem to fall asleep with it. I'll get into a kind of half sleep and just never fully rest and end up plugging back in my old Escape. Maybe i'm just losing my mind.

Settings are the same as the Escape around a 9 for air so i'm not sure why I feel the pressure or feel of it is different.

All opiates can affect sleep and breathing so I know its possibly or even likely its affecting my sleep, but I haven't been able to find any other Subutex users that have this level of issue to where they were exhausted due to supposed Complex Sleep Apnea. I haven't come across anyone and my subutex doctor also has claimed he doesn't feel they're linked, but he's likely biased.

During the fatigue situation, I didn't really change anything. I've come down to a lower dose since, but cannot seem to make the jump or get low enough to stop taking it. Sounds weak or silly to those who haven't dealt with withdrawal, but this drug is even worse than normal opiates to come off of. I genuinely think i'd have been better off without it. I do not drink much at all, at maybe 1 or 2 drinks a week if I go out with friends. I don't enjoy alcohol other than a few on the rare occasion. I do not smoke either.

[Miss Emerita]

So ResMed Airsense 10 is like a car make; next question is about the model: CPAP, Elite, Autoset, or Autoset for Her. I think all four models have the model name on the front of the machine. Could you let me know which one yours is?

You mentioned that your machine is a bi-level machine. Is it by any chance a ResMed Aircurve machine, rather than a ResMed Airsense machine?

I'd like to know your current settings on the machine you're trying to get used to. To find them, hold down the home button and the round dial at the same time for a few seconds until you see the option for the clinical menu appear. Then click on that and scroll down. What are your minimum and maximum pressures? What is your EPR setting? And do you have the ramp feature on? If yes, for how long and at what pressure?

One other thing. Is there an SD card in the slot on the left side of your machine? If there is, it's spring-loaded so a gentle press will release it and allow you to remove it. No need to remove it now; just want to know if there's one in there.

About Epstein-Barr. People who have had it are at a little bit of extra risk for autoimmune diseases. I'd strongly recommend that you ask your doctor for a screening panel for autoimmune disease.