Relapse?

[jon k]

Good morning all,

I've been on CPAP therapy for about a year. Like many folks, it was a tough start. I started with the CPAP the same week that my dad died, so the grief that I felt got all intertwined with trying to figure out all the moving parts of CPAP therapy - mask type, pressure, humidity. But after about 6 weeks the storm calmed down and I began to feel and see some progress. After about 3 months, plugging my face into the CPAP was a no brainer. I looked forward to the sensation of air entering my mask, knowing that it meant I'd sleep better, deeper. I had some wonderful nights there - even began sleeping through the night without waking! While I know the MyAir program doesn't give the same info as Sleepyhead, it was impactful for me to see that my scores hovered around 98 and 99 each night, with the occasional - and more frequent - 100's. Then, in late July, about 6 months in, something strange began to happen. It's hard to describe, but it feels like the natural rhythm of my breath and the air flow from the CPAP machine were at odds. I vacillated between not being able to get enough air and feeling like I was getting too much - almost before finishing an exhale I would begin to take in a deep breath. I began taking the mask off just to catch my breath and slow things down, then put it back on again. Around the same time, my sleep doc fired me - literally. The office was downsizing, and all new patients were asked to find another doctor. I have not been able to.

Fast forward to now. I no longer look forward to putting the mask on (but I do, every night). I no longer can get back to that place of relaxation and peace of mind, knowing I'll sleep through the night. Generally, I'll fall asleep, but I wake up in an hour or two with my heart racing. I'll take the mask off, catch my breath, and try to put it back on and wait out the sensation of not being able to catch my breath. Sometimes I can but other times I just can't. My MyAir scores are now in the 40's. Last night it was 78 because I wanted to make a concerted effort to keep it on as much as possible - but I am exhausted this morning and have a very full day of clients (I'm a psychotherapist) ahead of me. I'm going to call my DME company and see if I can't find someone there to talk to (they've told me to call in the past), and I'll call my old sleep doctor AGAIN and see if I can't get in, but expect that wait to be months long.

Two things have changed for me this year: I have gained 15 lbs (up from 170 to 185. I'm 6 feet tall) and gym activity has suffered because my work has really picked up. I am addressing both those issues, so maybe that will help. Any ideas from all of you would also be helpful - I'm just feeling at a dead end here. Thank you!

[Julie]

Hi, the first thing that came to mind was that (in July) your room was too warm - for some reason Cpap doesn't work very well in warm conditions... but only you would know if that was the case. The second thing would be the weight - I know it doesn't necessarily 'cause' apnea, but it definitely can affect it even in small amounts (of wt, gained or lost). However, I do suggest that you see your GP if nothing else and have new testing done for other problems - not everything's about OSA after all and many conditions can be insidious, whether cardiac related, hormonal, sugar, thyroid, Vit D, etc.

There is a feature on your machine called EPR (Exhalation pressure relief) and you can choose to set it at 0, but also at e.g. 3, and it may help with your problems - worth a try of a night or two I'd think.

I will presume you do keep your mask cushion clean and (eventually) replaced, but I also suggest you download SleepyHead software to see what's going on overnight - go to the 1st 'Announcement' on main pg for info, and then DL results to Imgur.com, leaving a link to them on this thread - someone else will probably give you better info on doing that here. MyAir isn't half as useful or informative.

[herefishy]

Do you know to change your pressure? If so, try it, up or down a teeny amount, just to see if you notice any difference.

[PoolQ]

Are you using sleepyhead? can you? something has obviously changed. An airsense machine CANNOT breathe for you, it cannot start a breath, aircurve models can. The breathing is you responding to something new fighting CPAP. Sleepyhead plots can help us to see if we can spot something, otherwise we are throwing darts in the dark

[jon k]

Hey everyone, thank you. I do have Sleepyhead - but I don't use it! I will now though! Maybe I'll use this upcoming blizzard that's about to hit us to get info and then post a link so others can help me figure this out.

I had a great conversation with my DME this afternoon. She noted that my pressure is set VERY low: 4 - 6, and that it may well be that while that takes care of the apneia, my body may need more pressure and suggested that I adjust the pressure up to 8 for a couple of nights, which needs a doctor's prescription...which I don't have...

Thoughts?

[49er]

Hey everyone, thank you. I do have Sleepyhead - but I don't use it! I will now though! Maybe I'll use this upcoming blizzard that's about to hit us to get info and then post a link so others can help me figure this out.

I had a great conversation with my DME this afternoon. She noted that my pressure is set VERY low: 4 - 6, and that it may well be that while that takes care of the apneia, my body may need more pressure and suggested that I adjust the pressure up to 8 for a couple of nights, which needs a doctor's prescription...which I don't have...

Thoughts?

Hi Jon,

You can adjust your own pressure. Go to this link for instructions on getting the setup manual for your machine:

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

49er

[ChicagoGranny]

She noted that my pressure is set VERY low: 4 - 6, and that it may well be that while that takes care of the apneia, my body may need more pressure and suggested that I adjust the pressure up to 8 for a couple of nights, which needs a doctor's prescription...which I don't have...

Anything below a pressure of 7 and I will feel like not enough air - suffocation feeling. Many others have reported something similar.

Most of the regulars here take control of their therapy and change it themselves. We know better than any medical professional what machine settings work best for us. SH is a great tool for analyzing and achieving optimal machine settings and optimal therapy.

[Julie]

DIY!

[russmac]

My first machine (Fisher & Paykel Icon) was set to a constant pressure of 7. I used it nightly for at least 3 years with the feeling that I wasn't getting quite as much air as I wanted.

When I started CPAP I had high deductible insurance so everything was coming out of my pocket. As a consequence I didn't interface much at all with the doc after I got my machine, and I didn't correct the problem. After 3 years I decided the machine would be out of warranty anyway, so there wasn't much risk in tinkering with it. I found a manual online and upped the pressure to 9. I felt great right away and left it there.

About a month ago, at the 4 year mark, my machine died and I bought another machine out of pocket (yay!). The tech told me it would automatically set the pressure according to my needs. She said she was setting the machine pressure with minimum of 5 and maximum of 15.

Right away I found it hard to get to sleep because I kept snoring myself awake, an indication to me that there wasn't enough pressure. So, I found the online manual (someone posted it in this forum) and moved the minimum pressure up to 8. So much better! I also turned off the ramp. By watching the SleepyHead numbers over time I saw that the max pressure rarely exceeded 11, so I set the max to 12.

With regard to needing a doctor's prescription to change it, if the machine is telling me my pressures fluctuate between 8.5 and 11, I don't see why I need to go to a doctor to tell me the very same thing, with the additional cost of an office visit. SleepyHead software is awesome.

[Lucyhere]

Hey everyone, thank you. I do have Sleepyhead - but I don't use it! I will now though! Maybe I'll use this upcoming blizzard that's about to hit us to get info and then post a link so others can help me figure this out.

I had a great conversation with my DME this afternoon. She noted that my pressure is set VERY low: 4 - 6, and that it may well be that while that takes care of the apneia, my body may need more pressure and suggested that I adjust the pressure up to 8 for a couple of nights, which needs a doctor's prescription...which I don't have...

Thoughts?

Hi Jon... you've received some good responses on adjusting your own pressure. However, I would suggest that you not jump from 4 to 8. If it were me, I'd try 6/9 and leave it there for several days before you make further adjustments.

[Gasper62]

I've sent a private message to your inbox, jon k

[Hang Fire]

I've sent a private message to your inbox, jon k

Beware of people sneaking in advice that they don't want vetted by other members of the forum.

[jon k]

Dear C Peeps (see what I did there? ),

Thanks again for all of this advice. Hang Fire, thanks for the heads up, but just so you know, the private message was a referral to a local sleep doctor who I didn't know about, so I'm grateful to have that info - but I know what you mean about being careful of info not vetted by the group.

This is what I did last night: First, I followed your advice and Did It Myself. On the recommendation of my DME, I took my range from 5 - 8 (from 4 - 6), and then, also turned on the EPR and set it to 1 (thanks, Julie! It's weird to me that I didn't know about this. Struggling to exhale has been the #1 thing that I've talked to my DME about - while otherwise very responsive, they never mentioned the EPR!).

I put my mask on and - INSTANT RELIEF. I could literally feel relaxation setting in as I breathed. I slept with it all night, and while I did wake up through out the night, I never once had my heart racing and feeling like I'm suffocating. So that's awesome. I'm still tired this morning, but it's not that heaviness in my forehead that comes with the brain fog.

I will not make any more tweaks until I can get a few more nights under my belt (unless you have feedback on what I did last night), and then I'll post the Sleepyhead info over the weekend and see what you think, if the 22" of snow we're expecting here in the DC area doesn't cut our power!!!

More soon
Jon

[ChicagoGranny]

the private message was a referral to a local sleep doctor who I didn't know about, so I'm grateful to have that info - but I know what you mean about being careful of info not vetted by the group.

I've sent a private message to your inbox, jon k

There are no rules forbidding the posting of doctor recommendations. I have to agree with Hang Fire, it would be better to keep this out in the open.

Hundreds of "guests" view this forum everyday. Who knows, the recommendation you gave might be valuable to one or more of them.

[Gasper62]

I respect my doctor far too much to ever post his name publically in this Lord of the Flies environment ! Private messages are just that, private. Some of you people really need to cut back on yer drama intake & output !