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+--- Thread: At wits end. AHI Varies SO SO much, your thoughts?? (/Thread-At-wits-end-AHI-Varies-SO-SO-much-your-thoughts)
At wits end. AHI Varies SO SO much, your thoughts?? - Daisylouu - 10-11-2016
I don't know how to give up or to continue trying. I've been narrowing my pressure with hopes of getting better numbers, but it still varies WILDLY with no rhyme or reason. From 1.43 on the low end, and 22 on the high end, and usually inbetween 8.79, 7.18, 13.94, 4.84, etc. etc.
I feel horrible, especially on nights of bad numbers. HELP!
I sleep in the same position, have tried the recliner, the sofa, the bed. I can not sleep on my side, due to joint issues.
Because it varies so much, it's pointless to go for another sleep study, it could be a calm night, or a difficult night....just a game.
Should I try a fixed pressure? I'm so confused and disgusted. Could this be an underlying health issue (neuro, cardio), I'm starting to get paranoid as to why I can't get this under control after a year and a half.
Hoping someone here is a really good expert at sleepyhead data, I tried to upload recent charts to imgur:
http://imgur.com/a/AeBJl
RE: At wits end. AHI Varies SO SO much, your thoughts?? - AlanE - 10-11-2016
Many of your events are clustered PB, OA, CA, H. Which could mean you might have the wrong type of machine. This is definitely something you need to discuss with your sleep doctor.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - PaulaO2 - 10-11-2016
Scan through the high nights and look at the 95% pressure.
If you are hitting 16 or even anything over 15.5 those nights, your max pressure needs to be increased.
Make changes then wait several weeks. Especially for you where the changes are so varying. The more data you have, the better.
There are a lot of things that go into a night's worth of sleep. Consider keeping a sleep journal. Note what you did that day, what kind of day, anything different. The next morning, note how you slept, any dreams, how you feel, anything different, etc.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - Sleeprider - 10-12-2016
Daisylouu, I have followed your progress and problems for quite a while. You have considerable obstructive apnea that appears to be sleep stage or sleep-position related. I think we have discussed using side-sleeping and soft cervical collars in the past. Since those strategies are not working and your pressure regularly wants to go above 16, you may be at a point where you simply do not tolerate CPAP pressure at a level that resolves your problem. It might be time to talk to the doctor about moving to bilevel, preferably auto-bilevel. It's also possible the Resmed auto CPAP with EPR might work better for you than the Philips with it's limited Flex pressure relief. You have given this a good effort over a year and still do not have therapeutically acceptable results, so if you're insured, the change is likely covered with a doctor's recommendation.
Have you pursued this with a medical professional?
RE: At wits end. AHI Varies SO SO much, your thoughts?? - Sleeprider - 10-12-2016
Just a side-note on the SH charts. Please minimize the large calendar by clicking on the small triangle in the date at the top. Lots of useful information is hidden.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - Adoniscmj - 10-12-2016
I would agree with the replies above. You may need a Bi level machine. You need to have a talk with your doctor about it. Try not to get discouraged, I know it is tough, but when the right combination is found everything will fall into place. Hang in there and talk to your doctor as soon as you can.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - storywizard - 10-12-2016
Hi DaisyLou
I agree with the replies you have been given, and speaking from personal experience the wrong machine and pain can be hell to deal with. I ended up using an ASV machine, not initially prescribed, as it is the only algorithm that could give me anything like a comfortable CPAP experience. And then there was the pain issues. the only thing that works for me has been medical marijuana. I take it as an oil, plus I use a topical product on the parts that hurt at night when I lie down.
I hope you find some answers soon, sometimes it takes real courage to pursue this against the mainstream orthodoxy of the medical establishment, I wish you the best of luck...
Storywizard
RE: At wits end. AHI Varies SO SO much, your thoughts?? - Daisylouu - 10-13-2016
(10-12-2016, 09:23 AM)Sleeprider Wrote: Daisylouu, I have followed your progress and problems for quite a while. You have considerable obstructive apnea that appears to be sleep stage or sleep-position related. I think we have discussed using side-sleeping and soft cervical collars in the past. Since those strategies are not working and your pressure regularly wants to go above 16, you may be at a point where you simply do not tolerate CPAP pressure at a level that resolves your problem. It might be time to talk to the doctor about moving to bilevel, preferably auto-bilevel. It's also possible the Resmed auto CPAP with EPR might work better for you than the Philips with it's limited Flex pressure relief. You have given this a good effort over a year and still do not have therapeutically acceptable results, so if you're insured, the change is likely covered with a doctor's recommendation.
Have you pursued this with a medical professional?
Yes, I have been in contact both via email and in person with the nurse practitioner, and she keeps saying that my overall average is around 8-9 and I should expect some bad nights, blah blah.
I feel horrible. I can't express that enough to her. She tells me I only weigh 120 lbs. and am not the typical cpap patient. SO WHAT? She keeps praising me for being compliant. But it's progressively getting worse.
I tried the cervical collar. I tried recliner, I've tried the neck pillow in various positions. The strange thing is how it can vary from 2 - 22 when in the exact same position. I'm baffled. And depressed.
I'm going to send another email, I need to come up with the proper wording.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - Sleeprider - 10-13-2016
One of the "words", is that you are uncomfortable and unable to sleep with the pressure this high. In auto-mode, your pressure goes to the maximum of 16 frequently or every night. You can elaborate on the side effects of that, but focus on the fact it is difficult to exhale. The way you feel counts, and the nurse practitioner may need to be taken out of the loop by complaining directly to your doctor. You are trying to build an argument that bilevel therapy may be a better solution since it appears your pressure may need to go even higher to resolve the OSA to clinically acceptable levels, which you exceed even on an averaged basis, and greatly exceed many nights.
You should indicate an interest in trying alternative PAP therapies, specifically auto bilevel (Aircurve 10 Auto / Dreamstation BiPAP auto). You may express concern that you are not currently adequately treated and request oximetry monitoring to verify you are properly ventilated at night, or to see if the apparent high apena levels are resulting in potentially harmful SpO2 desaturations. You know how you feel, and they need to take diagnostic and appropriate treatment steps to resolve your extreme fatigue and other symptoms. Simply assuring you that you're fine is not going to cut it. If you can't get satisfaction, get a different doctor. Tell them you feel you need a different, more proactive approach and request a referral (to put them on notice). Fire them.
RE: At wits end. AHI Varies SO SO much, your thoughts?? - rkl122 - 10-13-2016
(10-13-2016, 12:45 PM)Daisylouu Wrote: ................. The strange thing is how it can vary from 2 - 22 when in the exact same position. I'm baffled. And depressed. ...............Sorry for your discomfort. Why not follow Sleeprider's suggestion of reposting SH data with the calendar closed. I would further suggest closing the pie chart as well (Preferences=>Appearance), closing the right pane, and sticking with the details tab. That'll expose various channel data that may provide an insight, especially if you post, say, a couple high AHI nights along with a couple low AHI nights. Keep the respiration rate graph - there may be a clue there as well. Do you dream? If so, can you pinpoint dream windows? Or windows where you know you were definitely awake?
I'm not suggesting a pause in the interactions with the caregivers - just a complementary step that may provide additional insight to the experienced pappers here.
-Ron