Do I even have UARS?

[justinjustin]

I've tried everything. Still incredibly fatigued all day.

The ASV keeps waking me up whenever I use it. Sometimes I keep it on / asleep for 6-7 hours and I'm still fatigued and wiped.

When I don't use it, I feel just as tired. I'm wondering if I even have UARS. The testing lap I flew to was at a much higher sea-level elevation, so many of the centrals I experienced I believe were caused by this change. With that in mind, could I simply be mis-diagnosed? What does my report suggest?

Thanks for any insights, I'm desperate.

Here is my sleep study summary:
http://imgur.com/oVcXO2z

[PEF]

I also believe I have UARS. With me, it causes acid reflux into my throat during my REM sleep. I am trying to adjust to CPAP for it. The CPAP does seem to be keeping the acid away. However, I have a very hard time sleeping with it because of mask problems.

Can I ask what sleep test you had. Did they put a catheter in your esophagus to test for pressure buildup in your chest?

I found the best book to read about UARS is called Sleep, Interrupted by Dr. Steven Park. Have you read it?

[chunkyfrog]

I see you registered about two years ago, but it sounds like you do not use your machine every night.
Has this been going on for all this time, or has there been a recent change?
We need to know more in order to help.

[musculus]

I've tried everything. Still incredibly fatigued all day.

The ASV keeps waking me up whenever I use it. Sometimes I keep it on / asleep for 6-7 hours and I'm still fatigued and wiped.

When I don't use it, I feel just as tired. I'm wondering if I even have UARS. The testing lap I flew to was at a much higher sea-level elevation, so many of the centrals I experienced I believe were caused by this change. With that in mind, could I simply be mis-diagnosed? What does my report suggest?

Thanks for any insights, I'm desperate.

Maybe upload some sleepyhead figures of your flow limitations? Have you had any airway imaging done like cephalometry or CT scan?

[freddyb]

I'm guessing that the collective wisdom of the experienced board members can offer some insights if you could provide more information. But in response to your question, I don't read your sleep study summary as indicating UARS. It reads to me like CSA.

I have adjusted my own settings slowly over time on my ASV and keep careful notes, greatly aided by having read many of posts by some of the really great contributors found here, in order to try to reduce my own fatigue despite faithfully using my BiPAP ASV and CPAPs before that. There are many variables and factors that can contribute to continued apnea-related or other sleep-breathing-disorder-related fatigue. Sleep fragmentation is one factor that may apply if you are waking up a lot. Not getting sufficient deep sleep can also do that, and may be related to the former.

I suggest posting some Sleepyhead data and seeing where a discussion might lead. I know myself the desperation of never seeming to get relief and always feeling fatigue, fatigue which has threatened to ruin my life or at least it's quality many times over many years.

[patrissimo]

It looks like mixed apnea, 11 centrals and 9 hypnopneas / hour is pretty significant. You say that you think the centrals were caused by the higher elevation, which is definitely possible, but it is not something that you can know easily from your subjective experience. We can't track our own breathing when we are sleeping, for all you know you have centrals at home as well. The data from your ASV machine should be very informative; you can look at your AHI at home on ASV and the mix of a/h/central events using Sleepyhead and an sd card reader.

Not having relief from using ASV is definitely a sign that you might not have apnea; however it can take months of regular use in order to start feeling better for some people (like me), so unless you have used it 5+ hours/night for several months in a row, you can't rule out having apnea and the ASV being a solution. With chronic exhaustion and those AHI numbers I think it is extremely likely that you have some kind of sleep-disordered breathing (SDB). You just need to tweak your therapy to get it to work for you. If you can get titrated at a lab at home, that's great. You could consult with an ENT; and possibly add some surgery or a dental device; or work on nasal congestion issues; those are all things that synergize with pressure therapy to help your treatment.

For me, it took an MMA surgery (2nd most radical, other than a trach) plus turbinate reduction plus ASV used for months before I started feeling significantly better. I had AHI < 10 before, and AHI < 5 after the MMA, so it was hard to get doctor's support and for me to be certain I was following the right path and UARS really was my problem. With your numbers, it seems pretty clear there is significant SDB happening.

BTW, were you on pressure therapy while those numbers were taken, or are they untreated? If those are treated numbers, you should have no uncertainty about having SDB. Obviously it is a huge problem that your treatment isn't working, that you are still tired, and having that many events, you need to adjust it and get something to work, but I think it would be a big mistake to focus on anything besides SDB.

[archangle]

What was the elevation or location of your sleep lab and home?

How long have you been on ASV?

I'd be interested in an image of your SD card data.

[justinjustin]

I've had MMA + turbinates done. Nasal congestion is zero.

Those were untreated #s. I've also never had centrals on other studies, but they only showed up when I flew from Montreal to New Mexico at a much higher elevation.

I've check sleepyhead and my #s look good, when I can keep the mask on. Never was able to get consistent days/weeks using it; I always wake up and take it off after 2-4 hrs. The ASV seems to make me MORE tired, so I tend to doubt it's usefulness.

It looks like mixed apnea, 11 centrals and 9 hypnopneas / hour is pretty significant. You say that you think the centrals were caused by the higher elevation, which is definitely possible, but it is not something that you can know easily from your subjective experience. We can't track our own breathing when we are sleeping, for all you know you have centrals at home as well. The data from your ASV machine should be very informative; you can look at your AHI at home on ASV and the mix of a/h/central events using Sleepyhead and an sd card reader.

Not having relief from using ASV is definitely a sign that you might not have apnea; however it can take months of regular use in order to start feeling better for some people (like me), so unless you have used it 5+ hours/night for several months in a row, you can't rule out having apnea and the ASV being a solution. With chronic exhaustion and those AHI numbers I think it is extremely likely that you have some kind of sleep-disordered breathing (SDB). You just need to tweak your therapy to get it to work for you. If you can get titrated at a lab at home, that's great. You could consult with an ENT; and possibly add some surgery or a dental device; or work on nasal congestion issues; those are all things that synergize with pressure therapy to help your treatment.

For me, it took an MMA surgery (2nd most radical, other than a trach) plus turbinate reduction plus ASV used for months before I started feeling significantly better. I had AHI < 10 before, and AHI < 5 after the MMA, so it was hard to get doctor's support and for me to be certain I was following the right path and UARS really was my problem. With your numbers, it seems pretty clear there is significant SDB happening.

BTW, were you on pressure therapy while those numbers were taken, or are they untreated? If those are treated numbers, you should have no uncertainty about having SDB. Obviously it is a huge problem that your treatment isn't working, that you are still tired, and having that many events, you need to adjust it and get something to work, but I think it would be a big mistake to focus on anything besides SDB.

[jnk...]

For some, when it comes to using any form of auto, the benefits don't kick in until consistent usage for several weeks--and for some, several months, unfortunately. At that point, the brain can start to tune out the pressure fluctuations and noises and the like. If the usage of the equipment is on-again-off-again, the brain gets trained not to bother getting used to it all. But if you can see your way clear to resolving never ever to sleep, even for a minute, without the equipment--then, maybe, just maybe, things can fall into place.

This process is particularly important for those with the common sensitivities of UARS patients, who often awaken or are disturbed by the slightest twitch in the upper airway--instead of being like the average OSA patient who can sleep (badly, but sleep nonetheless) through full closures of the throat and train derailments and anti-aircraft guns outside the bedroom window--to the point of ridiculously bad O2 desaturations. UARS is very different from that.

I ain't sayin' it's easy. Not for most UARS sufferers. But going through the suffering of some weeks of bad sleep with very disciplined use of the equipment can pay off, for some, in the long run, once a person has gone through that desensitization process. I might choose not to drive alone at night while going through that. But only after giving that process the full shot can one know if the New Mexico people's ASV protocol for UARS is a hit or a miss, individually.

In my opinion.

And I have many.

For example, whether or not it is, uh, honest, to have UARS people travel a mile into the air just so that they will have centrals, in order for them to "qualify" for a machine that was never designed for UARS--well, hey, regardless: it seems to work well for some people. And some docs pride themselves in doing whatever they gotta do in an attempt to get patients something from their insurance that may help when all else has apparently failed.