Sleep Deprived and Going a Little Cuckoo

[SleepyHound]

I started my CPAP journey in April 2011 with an official diagnosis of OSA (my AHI was 37 in the lab). I used my Resmed S9 CPAP nightly after battling DME companies to finally get my stuff. I loved using my CPAP. I felt better in the morning, I didn't drag myself around for the first 4 hrs of being awake. And I didn't need to take Nuvigil for any residual sleepiness. My AHI each night was around 5-7. Pressure was 11.

Fast forward to mid-2014.....for whatever reason, I woke up at the 4 hr mark and would just take the mask off and turn off the machine. I kept putting it on every night but always woke up with my mask on the floor. The few times I kept it on all night, I woke up feeling tired and groggy. Eventually, wearing my CPAP gave me about the same quality of sleep as not wearing it. Went to my sleep doctor. He said as long as my AHI was below 10, I was fine. Go to bed earlier. Lose weight. Take my Nuvigil daily instead of as needed. I went to my family doctor and we talked about getting a titration study to see if my pressure needed to be adjusted. She was also going to refer me to another neurologist/sleep doc. Things only got worse after that. The primary care doc ordered the wrong test (I endured another diagnostic sleep study); insurance denying the procedure based on incorrect process for authorization by the sleep lab; no communication between the sleep lab/new neurologist/family doctor. It took 3 months for the lab to call me to tell me I have OSA and need to get back to the lab for a titration study. I called my doctor, since I never heard from her or the new neurology office. **Crickets** Family doc didn't have my results. Go make an appt with the neurologist. Neurologist didn't know who I was and because I didn't have a referral, I was told to go back to my family doctor.

2015 was a bad year for me in many ways. I pretty much neglected my health. So in 2016 I got a new family doctor and she sent me to a sleep medicine clinic. Saw the sleep doc yesterday and he's planning to get ANOTHER sleep study, assuming insurance will pay for a second one in 2 yrs. He told me to get my machine out and start up again. Meanwhile, I take out my S9 and dust it off (figuratively). Tried it last night. AHI was 7. No leaks. Slept 6.7 hrs. And I was a walking zombie from 6:30am (usual wake time) until 1pm. I could not get the fog to lift. I took my Nuvigil (which has been a daily thing since 2014), I drank my usual caffeine. I showered. I did everything to try to "wake up." Was totally useless at work. Even to the point that I contemplated going to EAP and initiating a leave of absence because I feel so miserable. New sleep doc said someone in his office would be calling me to schedule for something in 4-6 wks. GAAAH.

Suggestions? Advice? Do I keep wearing my CPAP? I'm almost afraid to because I'm so behind at work, I can't chance another zombie work day.

[Pugsy]

Exactly which S9 model are you using?

Have you used available software (ResScan or SleepyHead) to see exactly what might be going on?
Do you know about the software?
https://sleep.tnet.com/equipment

AHI of less than 5.0 is normally considered an acceptable level of treatment...not 10...at least here in the US.

You should start by figuring out what that AHI is made up of. Might just need a little pressure adjustment but before changing the pressure you need to see exactly what kind of apnea events are getting flagged.

[SleepyHound]

Exactly which S9 model are you using?

Have you used available software (ResScan or SleepyHead) to see exactly what might be going on?
Do you know about the software?
https://sleep.tnet.com/equipment

AHI of less than 5.0 is normally considered an acceptable level of treatment...not 10...at least here in the US.

You should start by figuring out what that AHI is made up of. Might just need a little pressure adjustment but before changing the pressure you need to see exactly what kind of apnea events are getting flagged.

I have the S9 Elite. I brought it to the appointment with me yesterday and the nurse told me the SD card wasn't reading properly and said there didn't seem to be anything on file b/c I hadn't used it in so long. Last night I got the "SD card invalid, erase card data" message. I chose "YES" and it restarted without issues.

I will look into the software. Thanks!!

[Holden4th]

Ahh the Elite - a fixed pressure machine. I'm not surprised that this has happened to you because if the fixed pressure setting is not working for you then it's next to useless.

The big plus is that you can tolerate CPAP therapy so that's the biggest hurdle overcome.

Is there any way you can get hold of an auto PAP machine? It will allow you to experiment through a range of pressures until you find the range that suits you. I was on fixed and getting some horrible results. Changing to APAP was a revelation, especially with the advice I was given on this forum. Resmed make an Autoset S9. Hire one for a while if possible to see what happens. Ask the knowledgeable folks here about your pressure settings and post your results using the free Sleepyhead software. I know that you are not far away from finding a solution.

So if you can get an APAP machine just ask the gurus what to do. They helped me immensely and I'm sure they will help you.

Best wishes.

[SleepyHound]

Ahh the Elite - a fixed pressure machine. I'm not surprised that this has happened to you because if the fixed pressure setting is not working for you then it's next to useless.

The big plus is that you can tolerate CPAP therapy so that's the biggest hurdle overcome.

Is there any way you can get hold of an auto PAP machine? It will allow you to experiment through a range of pressures until you find the range that suits you. I was on fixed and getting some horrible results. Changing to APAP was a revelation, especially with the advice I was given on this forum. Resmed make an Autoset S9. Hire one for a while if possible to see what happens. Ask the knowledgeable folks here about your pressure settings and post your results using the free Sleepyhead software. I know that you are not far away from finding a solution.

So if you can get an APAP machine just ask the gurus what to do. They helped me immensely and I'm sure they will help you.

Best wishes.

Thanks! I did a lot of research from this forum when choosing my S9 5 yrs ago. I really considered the AutoPAP and honestly, when it got down to it, I chickened out of asking for it. I was proud of myself for even speaking up and telling the DME company that I know they bill for the HCPCS code, and the doc doesn't order a brand....so I want the ResMed S9. They gave me a bunch of reasons why I was getting what I was getting....all lame answers until they said, "We have to order that. We've never had anyone specifically ask for a certain brand." The sleep doc actually called and said all machines are the same, they do the same thing and I was only delaying my own treatment.

So I chickened out and was proud of my little victory. It's been 5 yrs...so maybe insurance will cover a new machine. I think this new doc is much more, shall I say.....not crappy?

[ChicagoGranny]

AHI was 7. No leaks. Slept 6.7 hrs.

Think about the math. 7 events per hour x 6.7 hours = 47 events per night

That means you were awoken by breathing difficulties 47 times.

I would feel like crap under those conditions.

Let forum members help you decide on a new machine, and then start using Sleepyhead software. You can make your life much better.

[Pugsy]

First of all let's see what that AHI is made up of.
Use the software now with the Elite. Don't go down the "gotta get a new machine" road until we know what we are dealing with.
If that AHI is made up of mostly centrals then getting an apap capable machine might not be the best way to go because it can't fix centrals and could make them worse.

[Sir NoddinOff]

One AM is way too early to get up. Since she didn't mention it, here’s Chicago Granny’s list of sleep hygiene bullet points. Inquire here at CPAPtalk if you need more help with specifics or type sleep hygiene in the search box above. Plus get Sleepyhead to sort out the apnea events, as mentioned above:

Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Try to avoid daytime naps
- Practice total abstinence of caffeine including sources like chocolate (sigh)
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Use the bedroom for sleeping (and sex) only, and make sure the bedroom and bed are comfortable.
- Learn to appropriately handle emotional stress in your life
- Use CPAP software, such as the free SleepyHead, to make sure your therapy is optimized
- If you still don't feel or sleep well, make sure you have regular medical checkups to confirm there are no other medical problems