Doubting diagnosis

[BeActive]

First, please forgive if I should’ve searched more. I just found this site this morning. Ive read all the newbie articles but not sure if i missed something because of yet another miserable night and feeling horrible this morning.
I have struggled with insomnia for years, and discovered last spring that I was waking 30-50 X/night according to Fitbit data. Some of those were too short to remember, but there were always a few that lasted from 20 minutes to hours, plus eventually I just couldn’t get back to sleep at all, usually by 5:30 or 6am. No naps, tried to follow good sleep hygiene. I am moderately active, age 69, had lost 20 lbs, down to 145. Side sleeper, mouth closed. Feels like TMI, but I need help.

I was diagnosed with mild obstructive sleep apnea after a home sleep study in late August (5.9 per hour and 88% as lowest oxygen level). I carefully followed instructions for sleep study which emphasized that removing the oximeter during the study would abort the test. I have enlarged, knobby joints on my fingers due to arthritis, and realized immediately that the oximeter on my index finger was uncomfortable, but I thought I could endure. I could not. It began to throb and have sharp pain. I could not sleep, except I dozed fitfully from 12am to 1. I was awake the rest of the night, sitting up, rocking, moaning. I removed it at 4am. (Joint was red, swollen, hot for 3 days after this.) The sleep doctor said he had enough info from that hour to diagnose. I have doubted the diagnosis ever since.

Ive attempted to use Airsense 10 Auto since mid Sept. I usually manage to doze 1 1/2 hours with it on, and had been just taking it off and having my usual kind of night after that, IF I could let go of the panic of feeling suffocated. Often I just felt so agitated I couldn’t relax even with it off. I switched from nasal pillows to full mask 2 weeks ago, and just last week learned that I was supposed to be using this torture machine for at least 4 hours/day for 30 days to qualify for insurance. I have til mid December to qualify. Last week they finally turned the max pressure down. At least I’m not waking with a feeling of suffocation.

New mask and lower pressure have helped comfort/anxiety level, but I am sleeping no better. In fact, it’s worse. I feel like I’ve had no sleep for 3 nights. I know I’ve been fully awake most of the night. I am trying to sit with it on while watching tv in evening to try to increase my hours. I see it registers more apnea events during those times than the time I’m in bed. Now when I wake after hour and half, I know I have to keep it on, and I just get more anxious and agitated.

Is it worth this misery? I think part of the problem is that I really doubt this diagnosis. The highest # of events it has ever shown was 8.9 the evening I was watching tv. The hours I “sleep,” it is always <5. I’ve tried to discuss this with the doc but he says it’s important to treat even mild apnea, and insists that the diagnosis is correct.

Thank you for any feedback or advice.

[Miss Emerita]

Welcome, BeActive. One key to understanding what's going on is to have more information. Do you have access to a laptop or desktop? If so, I strongly recommend that you download the Oscar software (see my signature block). To feed your data into it, you will need an SD card in the little slot on the left side of your machine, and a way to read the SD card. If your computer doesn't have a reader, you can buy a cheap one that plugs in.

For example, one question that immediately comes to my mind is how many of your apnea events are obstructive and how many are central (meaning that you've stopped breathing for 10 seconds or more with no obstruction in your airway). When we're awake, we breathe pretty irregularly, often pausing our breath for more than 10 seconds, e.g., when we're concentrating on something. If you're using your machine while you're awake and you see centrals, they are meaningless. It would also be very useful to see how your pressure moves around over time and what kinds of flow limitations you might be having, to give two other examples.

I think if you can post some screenshots of your Oscar data, people here can help you understand what is going on, which might lead to considerable improvement in your sleep.

About the sleep study: can you afford to self-fund another one, just for your peace of mind, using an oximeter that won't cause you pain?

[zonker]

First, please forgive if I should’ve searched more. I just found this site this morning. Ive read all the newbie articles but not sure if i missed something because of yet another miserable night and feeling horrible this morning.

welcome to the zoo! let me say thanks for going through and reading before posting. so many people just come on and start typing away without attempting any research.

I have struggled with insomnia for years, and discovered last spring that I was waking 30-50 X/night according to Fitbit data.

the forum will help you with cpap. however, and i hate to be a debbie downer, cpap won't necessarily help with insomnia. they are usually two separate issues.

more folk will come along to help with cpap. i see that miss e has already. please pay close heed to her. she has lots of knowledge and a sympathetic ear.

meanwhile, keep at it.

good luck!

[Julie]

We definitely CAN help with insomnia - just put that into the forum search bar and see all the good info there is - and if you can get that even somewhat improved, Cpap may still be needed, but we can also help to optimize yours.

[Pugsy]

Anything flagged while awake are false positives and simply have to be ignored. It's not limited to centrals/CAs either. We can have false positive OAs and hyponeas as well.

Do you take any medications of any kind? If so, what?

[BeActive]

I so appreciate these replies and the welcome you have given in spite of my lengthy, whining post. I need to figure out how to show the clip of the posts I’m replying to, but thanks to each of you.
I will figure out the technology and try the Oscar soon. I had read about that on the forum and felt too groggy to figure it out at the moment. Also will see the insomnia posts. I see the doc Tuesday and will ask about re-testing.

Re: meds, I take atenolol/chlorthalidone 50mg, potassium, and simvastatin 10, ( and multivitamin, krill oil). Sometimes melatonin, doesn’t seem to help. Tylenol PM off and on, mostly on. Type 2 diabetes controlled by diet and exercise for 4 yrs. (no meds).

[Pugsy]

atenolol/chlorthalidone....beta blocker

simvastatin ....statin

Both known to cause problems with sleep

https://www.aarp.org/health/drugs-suppl ... omnia.html

https://www.goodrx.com/blog/could-your- ... -insomnia/

Now I know why you take them and they may not be 100% of the problem but they could be playing a significant factor.

[chunkyfrog]

Toss the fitbit. It is not a medical device--"for entertainment only" . . .
I gather you were not entertained.
Trust the sleep study.
Competent analysts need very little data for diagnosis.
Titration is more difficult, though; but possible to do at home with an autotitrating machine.

[kong]

Toss the fitbit. It is not a medical device--"for entertainment only" . . .

I agree as to not using the Fitbit. My sleep data on Fitbit is crazy.

[Pugsy]

The FitBit is "okay" but not perfect. I had one for a while and it once told me I was sound asleep when I know with absolute certainty I was awake and letting the dog out to go pee. So I always took what it told me with a grain of salt.

[BeActive]

I’ve wondered about the meds too, will discuss it with Dr. tomorrow. I haven’t spoken up enough, especially with telemed appts.
My Fitbit quit working in June, and I didn’t get another one. Good to know all of you are leery of the results on it. I originally got it for the encouragement to be active and eat healthy.

[Miss Emerita]

I’m glad you’ll speak up with your doc. For all too long, I tried to be a “good” patient, not questioning, complaining, or suggesting. Now that I treat the relationship more like a partnership, things are going better.

In this instance, you might be able to get a different drug that will have the wanted effects but not the unwanted ones.