Not feeling better

[Margaretm]

Hi, I am new to the forum and to CPAP. A bit of history: 48 years old, severe shortness of breath over a couple years. Doctor sent me to respirologist a year ago and he diagnosed Sarcoidosis but also suspected apnea. He arranged a sleep study but I cancelled it as I was not willing to wear a CPAP anyway. By the time my next appointment came in Sept. of this year, I was so fed up with the shortness of breath and not being able to take my pain medication in doses I need (I have degenerative disk disease as well as arthritis in both hips and both knees) as it was making me wake up gasping for breath, so I caved about the sleep study. Did two nights in lab, first night slept 79 mins. Second time was with a CPAP on but only slept 80 mins. (I do not sleep well away from home) Event count was 40 per hour, and oxygen went down to 79% from a base of 92%.

Since they could not titrate the CPAP as I didn't sleep enough, I had to go get an auto machine from the Sleep Disorders Education Centre (SDEC) and use it for 4 nights. I chose the nasal pillows mask. First night was rough and I finally took it off at 7 am so I could get some more sleep. However, 2nd and 3rd night went well, kept it on all night. Had trouble with rolling over from side to side, though. Fourth night I took it off after 4 hours. I was very disappointed to find I was not feeling much better, even after the two nights I had it on all night. I had been practically promised I would feel much, much better after just one night on it. Along with the shortness of breath, I'm tired all the time and have been sleeping anywhere from 9 to 12 hours a night plus a 2+ hour nap on many afternoons.

When I took the CPAP back, the lady downloaded the data and said that my events were 2 an hour when I used it. I couldn't believe it, as I was only feeling a tiny bit better. To illustrate, instead of gasping for air from walking from bedroom to bathroom (about 25 to 30 feet), I just breathe a little heavy with mouth closed. I'm not napping as much either and sleeping about 9-10 hours a night. I can deal with those hours, but not hte breathing difficulties.


She sent the auto machine back home for me to use until I get my own. Thursday, I am getting an oximeter dropped off for the night so they can see what my oxygen level is with the CPAP machine. If it's still low, I will need a BPAP, apparently. I chose to try a nasal mask to see if it was better than the nasal pillows, as I wasn't crazy about having my nostrils stuffed with them, plus was having trouble with the head gear staying on.


My big problem with with th mask is keeping the head gear from riding up my head. I am a side sleeper, and tend to turn my head down and into the pillow a bit. The headgear was pushing my earlobes up, squishing them. I got up a few times to adjust it, at one point realized I had it on wrong. I finally did get it to the point where I could sleep but it still wasn't fitting ideally, and was getting a bit of air leaking. Last night was my first night with this mask. I did get an idea to get a strip of velcro and make a chin strap iwth it, hopefully that would keep the straps in place below my ears.

The biggest thing though is, will I feel better? It's awfully discouraging when you're told you will feel miles better after just one night, and it thasn't happened after a few nights.

[Goofproof]

To find out what's really going on with your treatment you really need a machine that collects full data, the software and reader to read that data. By using a Nasal Mask instead of a FF mask you may be loosing treatment pressure from your mouth. If so the data can be poor or useless at higher leak levels.

You need to join in and fill in your profile in TExT, not ICOONY form so we all can see what equiptment you use, and be better able to help.

[ozze_dollar]

Whoever told you that you will feel much better straight away was just hoping. Very few feel the benefit immediately. I have been using VPAP now for 8 months and I clearly feel better but I am still striving to feel even better. I need to overcome some insomnia problems. I may never do that buts thats not my machines fault.

My only advice to you is dont give up. What else you going to do anyway?

[Java Time]

Margaretm,

Welcome to our little world.

I do hope the CPAP will make you feel better.

I also had pretty bad Apnea and sometimes daytime breathing issues. I don't mean exercise related, I just mean feeling like I wasn't breathing deep enough sometimes during the day even when I was idle. My issues sound different then what you are having though. I also wonder what all of the complex physical implications are for those of us with Apnea from starving ourselves of oxygen at night. Being on CPAP must help those various issues, I would think.

I have found after 2 months of CPAP treatment I have less daytime shortness of breath issues. I don't know why, I almost wonder if breathing more deeply at night is somehow translating over into breathing better somehow during the day. It also could be that since I am no longer starving myself of oxygen all night, that I am not trying to compensate for it during the day somehow. I really don't know, but I do feel better during the day. I hope you have a similar positive experience over time.

I think whoever promised you immediate results was not very helpful. For myself I had such a sleep deficit that although I could feel an incremental improvement fairly quickly, there was no sudden recovery. Every week I feel like I am getting a little more rested. I still feel like I am recovering at 2 months. I do think I will get to a better place over time.

It sounds like your doctor is getting you on a pretty good machine, I hope it helps you.

[Elle]

Welcome. I agree with the others to not give up. I am a side sleeper (in fact flip from side to side often) and I find my mask stays put and is very comfortable. It is a Mirage softgel and the only adjustment I had to make to it was to not have it too tight. I actually love my cpap and when I don't have a good night or I am tired during the day I no longer attribute that to cpap but to 'just one of those things'. No one has a great sleep and feels rested all the time....apnea or not.

Make sure you get the right mask. I am glad they are following up with you to see exactly what you need. Hang in there.

[nanwilson]

Morning Margaret
For headgear that rides up, this is what you do. You put a bit of velcro (the scratchy side) on the back upper strap, The velcro acts like a grip and will kind of stop the strap from sliding up or down on your slippery hair. I use 2 bits of velcro, about a inch long on either side of center on the strap. It does not hurt your hair, will not stick, just grip.
Believe me it takes alot of tweeking to get this therapy to where it does the best. To get your ahi down to 2 an hour so fast is really good. I would suggest you read, read and read some more on this site, especially the cpap wiki and the new users guy..............I read a ton of the threads too, just to learn what I needed to do. If you are not sure about something, do a search by just typing in a few words on what you need to know....if you aren't satisfied with the search, just ask, one of the good folks here will give you lots of advice.
Cheers...and welcome to the land of hoseheads
Nan

[MsBea]

Check your meds! I wasn't feeling well for longer than I should have and it was my meds.

I have trouble with my ears getting squished sometimes too but I just readjust when needed.