Sleep Dr. Visit & Noncompliance

Hello,
Sorry this is a bit of a long story but I would dearly love to get some feedback. Diagnosed with sleep apnea almost 2 years ago and was 100% compliant for 15 months. My sleep did not improve, however. The sleep test was at home and with all the paraphernalia I had to sleep on my back which I never do. I was skeptical of the diagnoses as I my husband reported no snoring, no gasping and no waking. I've never had a problem falling asleep but will wake up after 3 to 5 hours of sleep wide awake and unable to go back to sleep. This problem continued while on cpap therapy and did not improve. The only thing I liked about the cpap was the humidification so no more dry and clogged sinuses at night.

This past summer I went to Europe for two months, brought my cpap machine, electric converter, cleaning supplies, etc. with every intention of using it. Right from the first there was no place to plug in and I didn't bring an extension cord, so didn't use the cpap. Continued not using the cpap and had the best sleep in years. No congestion, slept 10 pm to 5:30 am every night, BUT took a short (30 minute to 1 hr) nap each afternoon. No issues with snoring, gasping, etc. No waking up in the middle of the night unless to use the bathroom but went right back to sleep.

Then, back home and back to work. Used my cpap for several nights and struggled worse than when I first started using cpap. Congestion was worse, woke frequently and masks were uncomfortable (have two nose masks - pillows and one that surrounds my nose). So, I took it off and put it away. Now I'm back to waking up at 2, 3 in the morning and wide awake on 3 to 5 hrs of sleep each night. Sometimes I get so tired in the afternoon at work I can't keep my eyes open (and definitely can't get any work done!). By Sunday I'm so sleep deprived I sleep most of the day. I've gone to an endocrinologist and taken all kinds of tests with no results.

Today I go to the sleep doctor about these issues. I'd like to ask for a note from him for reasonable accommodation in my workplace -- which will either be to work from home some afternoons each week so I can go home, take a nap, and then finish my workday at home (I work on a computer). Or, we do have a "quiet room" at work where I could go take a snooze if the extreme fatigue hits me in the afternoon, however others use this room (nursing mothers, etc.) so it's not always reliably available.

Maybe I should have another sleep test to see if I really have apnea. If you take a test in the sleep lab is it easier to sleep on your side? I didn't think I even slept at all with the home test it was so uncomfortable. If I truly do have apnea I will continue with the struggle to use it, but it didn't help my sleep at all when I did use it so I'm not sure it's the source of my sleep problems.
Thanks for any feedback you may have,
Alicialee

Agree that a proper lab study should be done. But, a couple of things occur to me - your mask may just not be the right one for you - there are so many out there (see Cpap.com for variety) that given a proper fitting (lying down - your face changes then) in an appropriate size, you can tell if the nose bridge is causing any congestion, and if you use the humidifier all the time because you think you should - it's not therapy but a facilitator for Cpap when local conditions are dry whether because of central heating, or just ambient humidity, and too much can cause congestion as well. Play with the settings and try not using it at all, but always keep room humidity in mind - you won't use up much water if local climate is already humid, and vice versa. I hardly ever need mine, others like it all the time.

I can only reply on what I do know. When I did my sleep study at a sleep center, I was able to sleep on my side. I am a side sleeper and cant imagine how I would sleep on my back. Welcome to the forum and hope you get somewere with the sleep Dr and new sleep study. Cpap is tough getting use too etc but is def a life saver. Maybe your pressures are off and with the new sleep study might be updated?

Hi AliciaLee,

This site might be helpful.

https://askjan.org/media/Sleep.html

Additionally, as one who has asked for accommodations in the past due to documented disabilities, here is some advice you might want to consider. When I had my most successful disclosing experience, I felt like it was due to framing it in terms of how giving me an accommodation would help me do a better job for the employer vs. what I specifically needed. Keep in mind that you are being paid to solve the employer's problems and if for any reason, he/she perceives that you are going to cause more trouble than it is worth, they will find a way to fire you legally and not violate the ADA.

Also, I never got a medical professional involved in my accommodations issues as fortunately, my employers never asked me for proof that I had a disability. I guess they figured that no one would lie about having a disability although I guess someone might.

Another thing to consider is is there a way you can ask for these accommodations without having to worry having to mention you have sleep issues? I did what several times and was successful. It was only when I had no choice but to disclose that I did.

As one who has had similar type problems to yours, I greatly empathize. However, just because you are sleeping better without the machine than when you use it, doesn't mean that will continue. So personally, I would commit to doing whatever was necessary to optimize your pap therapy and decide how long you want to give it to work, whether that is 6 months, 9 months, a year, etc. Reevaluate to see how things are going and if you think you are progressing, continue with business as usual. If not, then look into other options to treat your apnea but don't ignore it.

Finally I just realized I am giving you the impression probably than sleep disorders are considered disabilities. But I believe they aren't and it is the problems resulting from them such as cognitive issues that would be.

Best of luck.

49er

I believe that, if you are a veteran, a sleep disorder may be considered a disability.
("Why" is a puzzle, but that gov't for you)
Otherwise, it is mostly considered treatable; and if you fail to treat it, then the burden is on the patient.
Not fair, of course. Sometimes easier to get the right equipment and use it than trying to fight the system.

chunkyfrog wrote:I believe that, if you are a veteran, a sleep disorder may be considered a disability.
("Why" is a puzzle, but that gov't for you)
Otherwise, it is mostly considered treatable; and if you fail to treat it, then the burden is on the patient.
Not fair, of course. Sometimes easier to get the right equipment and use it than trying to fight the system.

CF,

You are right about veterans, sleep disorders, and disabilities.

Here is a link on determining disabilities which I should have posted previously:

https://askjan.org/corner/vol05iss04.htm

Actually, a percentage of people are 100% compliant with cpap and still have cognitive issues. Whether they would have to provide proof depends on the employer. I didn't as I previously mentioned.

It's likely that your treatment is not optimal because the masks you have aren't ideal for you, the humidification may contribute to your congestion, and the settings on your machine need to be adjusted.

You need someone to take a look at your efficacy data (if you don't have a brick) and see if the settings need to be adjusted. You can learn to do that yourself and take charge of your own health. Or we can help you. But simply getting work accommodations for poorly treated apnea gets you nowhere. It will worsen your health over time.

Have you had new mask cushions in all these years?

Hopefully this sleep doctor is good enough to address these issues and work with you for better therapy. A new sleep study may help you see that this problem really does need to be addressed.

You may have slept better in Europe because of multiple factors: good physical exhaustion from days on your feet instead of your seat in front of a computer, better quality food, less stress on vacation, etc. That doesn't mean your apnea was necessarily better, considering you are back to the same symptoms at home.

Thanks for your information and support. My visit with the sleep doctor resulted in a letter for accommodation (work from home in the afternoon so I can take a nap and not have to drive home drowsy), and a new sleep study that will be in the lab where I'll be able to sleep on my side or stomach as preferred. I think what was stressing me out most was telling my boss I needed to take a nap every day - it made me feel like a baby! But she was concerned and understanding and next week I'll start working from home in the afternoons after a little nap to give me some energy. I think just taking the pressure off might help me sleep better at night, but if the sleep study does prove apnea I'll restart using my cpap, maybe try some different masks as I only used two different kinds that weren't ideal. I'm not used to asking for anything for myself and this was a really weird feeling, but the response from those of you in the forum, my sleep doctor and my workplace has been heartwarming. Thank you.
Alicialee

Alicialee wrote:Thanks for your information and support. My visit with the sleep doctor resulted in a letter for accommodation (work from home in the afternoon so I can take a nap and not have to drive home drowsy), and a new sleep study that will be in the lab where I'll be able to sleep on my side or stomach as preferred. I think what was stressing me out most was telling my boss I needed to take a nap every day - it made me feel like a baby! But she was concerned and understanding and next week I'll start working from home in the afternoons after a little nap to give me some energy. I think just taking the pressure off might help me sleep better at night, but if the sleep study does prove apnea I'll restart using my cpap, maybe try some different masks as I only used two different kinds that weren't ideal. I'm not used to asking for anything for myself and this was a really weird feeling, but the response from those of you in the forum, my sleep doctor and my workplace has been heartwarming. Thank you.
Alicialee

That is wonderful to hear Alicialee. Thanks for letting us know.

49er