Exhausted, hoping for some help

[Pookster]

Hello, I am a 47 year old female. 5'5, 110 pounds. Been thin all my life. I have been tired since I was 18 years old. I have been to numerous doctors and had countless tests done. I am also type 1 diabetic. In 2016 I went to a sleep doctor who did a sleep study and determined I have moderate sleep apnea, all hypopneas. I was prescribed an APAP with pressure range of 5-20. I wore this consistently all these years and was still exhausted. According to the doctor, my numbers always looked great, so he did not know what was causing my tiredness. Last year he did another sleep study while I wore my mask. This showed the hypopneas were not controlled when they tried pressures of 7 and 8. AHI looked to be 31.6, and that was while I was wearing my mask. Needless to say, I was very upset as I felt I had been wearing this and it wasn't doing me any good all this time. The doctor then stated that the machines were not good at registering hypopneas, and that was most likely why my numbers looked good to him all these years. He then wanted me to get a bipap, however I had just purchased a Resmed AirSense 10, and wanted to see if we could work with that. He turned my pressure up to 10-18, with a EPR of 3. Went back 3 months later, and he says numbers look great. When I look at my machine, it looks like the pressure is usually around 11.2. I am still severely exhausted, and he is ready to refer me to a tertiary center (Mayo, or Cleveland Clinic) to see what is wrong with me. I am beyond frustrated and so tired. I think the issue is that my hypopneas are not being treated correctly, but I don't know what to do. Hoping someone will read thru this and have a suggestion. The doctor also ruled out narcolepsy with the nap study. He also doesn't think idiopathic hypersomnia either. I attached my sleep study from last year while I was wearing my mask.
Thank you!

[Julie]

Just curious how much testing of other systems (e.g. bloodwork or ?) you've had - concentrating only on sleep can be deceiving.

[Pookster]

Over the years, I have had repeated bloodwork checks on CBC and hematology panels, thyroid, metabolic panels, celiac disease, full rheumatology blood panels, iron and vitamin levels, tests for infectious disease. Multiple GI scopes, CT Scans. This is why the sleep doctor was thinking it might be something very obscure. I am just concerned that if the sleep apnea is not being treated properly, that may be the issue. If I could find a way to know if my treatment is working, then I could at least eliminate the apnea being the cause.

[Miss Emerita]

Hypopneas -- episodes of shallow breathing -- can be either obstructive or central in nature, and the best way to treat them depends on what kind they are. I don't see information in your sleep report about the nature of your hypopneas, so I'd strongly recommend that you follow up with your sleep doctor about that.

Hypopneas can be defined in two ways:

* 10 seconds or more of shallow breathing in which a person’s airflow drops by at least 30% and blood oxygen levels also drop by at least 3%;
* 10 seconds or more of shallow breathing in which a person's airflow drops by at least 30% and blood oxygen levels also drop by at least 4%.

Your test used the 3% definition; your hypopnea index might be lower if it were computed using the 4% definition.

PAP machines can measure the shallowness of your breathing, but they can't measure drops in your O2 levels. That may be why your PAP data look OK and your sleep-test data told a different story.

I note that your sleep report summary says you have significant periodic leg movements, yet while the data show significant leg movements, they show almost no periodic leg movements.

What machine would be best for you probably depends on whether your hypopneas are central, obstructive, or some of each.

Could you let us know what medications or recreational drugs you use and whether you have a stuffy nose or anatomical anomalies in your nose or throat?

[Pookster]

When I had talked to the doctor, he indicated the hypopneas are obstructive in nature. In the sleep report, it looked like I only had 3 central events (if I am reading this correctly).

My nose is clear, and I don't have any anomalies in the throat or nose. It was said that I probably have a small airway, and that was the source of the issue.

I don't do any recreational drugs. I take a multivitamin, Vitamin D3, 81mg aspirin, cholesterol pill, and insulin.

[Julie]

Have you tried not taking each med for e.g. 5 times ea. (it can take that long to be effective) and see what results are? Skipping one or 2 nites isn't enough to be sure.

[Miss Emerita]

I wouldn't recommend stopping the cholesterol or insulin without consulting with a doctor. And I think it's unlikely that the vitamins or aspirin are affecting sleep-breathing.

If your hypopneas are obstructive in nature, then I think it'd be a good idea to get a bilevel machine, as your doctor has suggested, specifically, a ResMed Airsense 10 VAuto. The reason is that pressure support can help to increase your tidal volume (the amount of air you move with each breath), and bilevel machines can offer more pressure support than you current machine can. (For your current machine, the pressure support is called EPR.)

There are no guarantees that this will help; if your airway is unusually small, it may be that the extra PS won't make much difference. Still, it might.

So I would recommend getting the Airsense 10 VAuto (not the 11, which is still not proven to be better than the 10 and may be a bit worse in a few ways). If you outright own your current machine, you can send a private message to forum member LSAT, who may be able to help you get some of your money back.

I also think it could be very helpful to take that referral to a tertiary center.

[Pookster]

Thank you both for your suggestions. Yes, I am not going to be stopping my insulin or cholesterol meds. I need the insulin to live as a Type 1 Diabetic. That one is not negotiable.
I plan to follow up with my sleep doctor regarding going ahead and trying the bipap even if it may not help. Also, going ahead with the referral to a major center.

[Miss Emerita]

Good. Keep us posted, would you?

[chunkyfrog]

----"I was prescribed an APAP with pressure range of 5-20."
Why was no titration test prescribed?
Were you encouraged to tighten the range, since you had an APAP?
Odd, IMO.