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Looking for advice on new machine, good for travel - and adapting to life without PAP
#1
I'm new to this board, and seeking advice about a new issue. I was diagnosed by a pulmonologist with "severe sleep apnea" five years ago and successfully used a ResMed CPAP set to pressure of 7 for four years. During the past year I've had increasing challenges with the machine, primarily waking up feeling "smothered" by the machine but also exceptionally dry mouth/throat/eyes. Three different respiratory therapists downloaded data and said the machine was working properly.
Yesterday, for the first time since initial diagnosis, I saw a sleep medicine doctor who told me that my sleep study five years ago had shown only 5 apnea episodes per hour but 35 awakenings per hour, which isn't life threatening. In light of this plus the fact that I've lost 10% of my body weight since the study, she suggested that I try going without CPAP - but also has given me a prescription for a new APAP machine in case I want to use a machine going forward.
I'll give it a little time to decide but last night without a machine was unpleasant as I woke up multiple times and had difficulty getting back to sleep. This morning I ache all over and have a headache, both unusual and probably both due to interrupted sleep. Can't believe I'm thinking of continuing PAP therapy after being told I don't necessarily need to do so ..... but I am.
So am wondering what APAP machine covered by Medicare is likely to be best for function, ease of transport and use during my frequent travels, and offers good humidifaction which I need. And if there's a machine not covered by Medicare but exceptionally good for travel and provides high humidity, I might be willing to pay out of pocket. I can only use nasal pillow-type mask so must have a machine that works with that.
Your suggestions will be appreciated!
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#2
Welcome to the forum Hazel. It seems like an exceptionally bad idea to tell someone that they can just do without CPAP if they choose, considering your previous diagnosis for moderate sleep apnea and with a high respr, and the fact this stuff doesn't miraculously resolve itself.

Most machines are pretty darn portable, and I would focus on getting one that is comfortable and treats you well, rather than a "travel cpap". A CPAP like the Resmed Airsense 10 Autoset will be a significant step up from your previous machine, with many more comfortable options. Most importantly, it will record data so you can optimize your treatment without a new sleep study. The Resmed Airsense 10 has a comfort function called EPR (exhale pressure relief), that lowers pressure during exhale. It also will vary pressure through the night to give you just the pressure you need to prevent the obstructive events and respiratory disturbances. Considering your past therapy with (presumably Resmed S8 CPAP) this should be very comfortable, portable, and will come with a nice compact carry case.

I doubt your problem that took you to CPAP originally has gone away. I think the advice you received was very poorly informed, and assumes your apnea has remained stable or diminished since your test many years ago. The opposite is likely true. Get the Autoset and a comfortable mask to use with it. If you tell us what kind of mask you had before, we can perhaps tell you what more modern choices are available. Basically we need to know if you tolerate nasal therapy, or need a full face.
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#3
Hi Hazel,
WELCOME! to the forum.!
I wouldn't do without your CPAP therapy.
The newer machines are pretty small so you might look into the Resmed Airscense10 AutoSet or the comparable brand, Respironics DreamStation Auto, (not sure of the model number of that one).
I wish you good luck as you continue your CPAP therapy, hang in there for more responses to your post.
trish6hundred
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#4
ive been using a transcend unit 4 nights a week for at least 2 years at this point with zero trouble. its been flawless. Just bought a slightly used HDM Z1 unit as a backup in case the transcend unit breaks down on me. I took the Z1 for a recent trip to see how it would work for me and found it to be fine. Its louder than the transcend unit but i had no issues getting used to it.

both units are great for travel but i do not use a humidifier so cant comment on that
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#5
Hazel,

Congrats on the weight loss...I think it may have helped (compared to the original sleep study), but it doesn't mean you should be off the CPAP / APAP. Even though you may only have an AHI of 5 (which is on the borderline for sleep apnea), the 35 sleep disruptions an hour should not be sneezed at. Has anyone ever looked at your numbers and thought about UARS?

Upper Airway Resistance Syndrome is like sleep apnea, but your body reacts faster and a sleep study doesn't count the events as apnea events. In my case, it was an AHI of 6, but a sleep disruption of almost 60 that put me on CPAP. Sure, by AHI I'm borderline too, but if the APAP can help with the sleep disruptions for you like it did for me, than going "off the hose" is probably ill advised. Just because they are not full-on apnea events doesn't mean your sleep is isn't disrupted...in your case it is, to the tune of 35 times an hour.

I'd suggest taking advantage of the new script for an APAP, getting a good mask that works for you and then using some of the info available here to get beyond the suffocating feeling so you can get beyond the sleep disruptions. I know I've had a lot better go of things since I did....so hopefully it will mean the same for you. I'm a big advocate of being proactive when it comes to your health...including with CPAP therapy...too many folks just look at a set of numbers (usually AHI) and assume all is right in the world whilst others just don't know about things like UARS.

At least give ti some thought.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
Thanks to everyone who's taken the time to share information. PsychoMike, I found your thoughts especially interesting since your experience seems so similar to mine and the concept of UARS is new to me. Last night I used my CPAP and slept much better than the previous night without it. The new doctor decreased my machine's pressure to 6.5 (from 8) and there was no longer a sense of being smothered. I do plan to shop for a new machine, although there again I've already gotten different information from different clinicians. One respiratory therapist told me the AirSense for Her would be perfect for me, while another (working for the same company even!) insisted that a different Respironics machine was the only way to go since it is pretty much indestructible. This isn't easy, is it?
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#7
No Hazel, it isn't easy. Every Durable Medical Equipment supplier (or "DME") has "their" brands....the ones the sell and work with. They'll tell you theirs are the best and everyone else's may work, but is inferior to theirs because of X, Y or Z (insert your own reasons here). In reality, they all do essentially the same thing, but there are subtle differences in algorithms or features that some prefer to others. Lots of marketing and hype, subtle differences in the grand scheme of things.

One thing to look at, if you're comfortable with it and your machine records data, is to use software such as Sleepyhead to see for yourself what's going on. Keep a diary for a bit to note how you felt about the previous night's sleep and you can compare that to the data from the software. Get a good baseline and then you can consider taking the next step of possibly adjusting your pressure a little and seeing if you get improvements (small changes, give it a good week or two, keep going with the diary and then see how your feelings and the numbers have been impacted by the change). Only make small changes and only change one thing at a time (small change in pressure, or small change in humidity or....) then give it a chance to see how it impacts your sleep numbers and how your feel about your sleep. If you go this route, it is an iterative process that does take time, but I did it and have gotten far better numbers and better sleep quality as a result. YMMV, but if you're comfortable with doing it, then it can be a benefit....especially with UARS...as the DME will generally look at the AHI number and say all is fine even though the UARS is causing a lot of sleep disruptions. Sometimes it can be a small tweak that makes a huge difference in how we do on therapy (like the 0.5 cmH20 change that makes you feel less like you're being smothered).

Hang in there Hazel....it can be exasperating dealing with DMEs and getting our treatment optimized for you, but if you find "the spot" that works best for you, it's worth it.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
Hazel, I think you might like the Resmed Airsense 10 Autoset for Her better, mostly because it offers exhale pressure relief. For UARS this can be a bit better than the CPAP with Flex by Respiroinics. It is a real pressure reduction that lasts for the entire exhale, and pressure increases as you initiate inhale. This is is a user-settable comfort setting and is very effective for those that feel suffocated by pressure during exhale.
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#9
I'm like Sleeprider....I use a Resmed S9 (predecessor to the Airsense 10) and I do like the exhalation pressure relief. Personal preference, but one that two of us happen to like. Smile The "for Her" algorithm is supposed to be even that much better (YMMV, of course) for those on the opposite end of the spectrum from "brick walls with feet" (big guys like me) Smile
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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