One Year In - Sleeping better, still feel terrible

[Khethma]

Hi, everyone.

New member here - but not exactly a CPAP newbie. I've been using CPAP for just shy of 1 year. I had an at-home sleep study almost a year ago, and it turned out I had severe sleep apnea (over 70 events per hour). Once I got through the 3-week trial period and got my machine calibrated for my specific needs, I have seen dramatic improvement in my sleep quantity and quality. I have no concerns about the quality of my treatment or how my machine is working, but I'll give my current 90-day averages, just for reference, before I get to my question(s):

AHI: 0.48
Leak 95%: 9.73 L/min
Avg. Usage: 6 h, 15 min. daily (this is nearly all sleep since I have no problem falling asleep or going back to sleep if I wake up).

My numbers have been in these ranges for the entire 11 months on CPAP. I've adapted well to the treatment and have only had a few hiccups here and there that were well managed by my healthcare team. I have no doubt that my sleep quality and quantity have improved. I know this for certain because I've only missed one night of treatment since I started. I traveled at Christmas and forgot a piece of my equipment at home and had to wait until the next day to get a replacement piece. So I had to sleep without my machine, and it was the most awful, horrible, miserable sleep I've had since before starting treatment, so I know the CPAP is working. I am unquestionably sleeping much better.

But I don't feel any better. At all. I am still exhausted. I still feel like I can't wake up in the morning. I still feel like I want to nap off and on all day. I still have no energy. I wake up and I can tell I slept fine, but it doesn't make one bit of difference to how I feel.

Has this happened to anyone else? Is nearly a year with such a great response in terms of reducing the apnea an unreasonable time for this to take to feel better? I know a lot of people post on here wondering when they'll feel better, but from what I can see, that's usually in the first few weeks of treatment, and I know that it can take a while (almost everything I've read suggests it can take a few months) so I'm trying to be patient, but I'm curious if others have had a similar experience of having a great response to the treatment but not feeling better.

My respirologist/sleep specialist thinks this is too long without feeling better. He doesn't think it's a problem with the treatment. He suspects something else is going on, possibly another sleep disorder of some sort. So he's planning to have me come in and do an overnight study in the sleep lab, but we have to wait until the Covid-19 danger has passed, so he's tentatively scheduled it for 3 months from now.

So I guess my specific questions are: Has anyone else had as similar experience? Has anyone else had the CPAP resolve the sleep apnea but not the symptoms of fatigue, exhaustion, tiredness, etc. even after nearly a year of treatment? I feel like I'm outside the range of the "few months" all the information says it can take, but I don't know if I am, and I'd like to hear from others who might also have taken more than "a few months" to feel better. I'm trying to get a sense of how normal or not normal this sounds to others.

Thanks in advance for you thoughts on this.

[bombayone]

I am sorry that you are not feeling well. Suggest that you look into other medical issues, both physical and mental, beyond sleep apnea. I wish you well.

[Pugsy]

Do you really have the AirSense 10 CPAP machine you have chosen in your equipment profile? If so, you are missing some data points that the other models gather that might point to some potential issues that could be affecting your sleep.
The AirSense 10 CPAP machine is a bare bones basic machine and is missing data that might give a clue as to what might be going on.

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

Do you have any other physical or mental health conditions going on that might impact how you sleep or feel during the day?

Perhaps 6 hours of sleep isn't enough. Many people find their butts dragging during the day if they don't get 7 or 8 hours of sleep.

Do you drink alcohol in the evening?

When's the last time you had a good complete physical including routine labs and maybe some vitamin D levels and hormone levels?

Often people want to blame all their problems on sleep apnea issues and expect the machine to fix them but often people have other problems unrelated to airway issues and the machine simply can't fix problems unrelated to airway issues.

[Rob K]

Your not alone in this. I'm going on almost 6 years with the machine. It has made a big improvement in how I feel but like you I'm still quite tired and low energy most days. Before I got the machine I was in real bad condition due to untreated apnea for a long time. I still have some sort of sleep problem where I wake to many times and don't get quality sleep. Right now it doesn't look to be apnea related. Currently keeping a detailed journal and learning to interpret the detailed data from my machine to get things figured out.

Actually I was in real bad condition before I found this forum. I already had the machine for a couple years. Two sleep studies all wired up in the lab, a couple different doctors, nor the dmv had the right pressure settings. It was the people here on the forum that helped me figure that out using the data from my machine. Turned out I'm one of the people that doesn't feel better until my AHI number is down around 1. The industry and medical teams that I encountered seemed to think that if your number is below 5 that you are all good and weren't able to help or didn't have answers beyond that.

[Miss Emerita]

khethma, I'm glad to hear you will be getting a full polysomnographic study; very sorry you'll have to wait for 3 months. Pugsy has asked a series of important questions, so be sure to answer them.

Does your machine say "Autoset" in the bottom right corner? If so, scroll down among the machine choice until you get to the Rs.

[kteague]

You're getting a lot of good pointers to help you move forward. If your treatment is indeed therapeutic, yes, a year is a long time to not feel better. Hopefully your machine will be able to give the data gurus here some data to see if there's any obvious problems. While you are waiting to be able to have the in-lab study, it would be a good time to rule out other contributors to how you feel. Have you already been evaluated for thyroid function, anemia, and diabetes? I know when my Vitamin D is low I feel like a slug. If you rule out everything suggested in this thread, you may want to ask your doctor if narcolepsy needs to be considered. For some limb movements during sleep can make one not feel refreshed, but since you report sleeping well, I wouldn't suspect that unless you've been observed sleeping and they reported lots of movement. I have a concern about your testing and if you think it is of concern, maybe you can ask your doctor. At some point you need to know what your sleep looks like while on effective CPAP treatment. A diagnostic study without your machine (the usual test) won't tell you what your sleep issues might be in your current situation. I would hate for you to have to go through a diagnostic study then a titration and still not know what your sleep has looked like in these months of treatment that still leaves you unrefreshed. Best wishes in finding answers.