UARS and continued fatigue

[allielb83]

First time poster here, hope I get the rules right! I'll try to keep this concise. I've suffered with almost disabling fatigue for most of my life (30 y.o now). Sometimes the doctors find things and sometimes they don't, but even being treated for various problems hasn't fixed the fatigue. I have: asthma, hypothyroidism and a history of B12 and iron deficiency anemia. I take exercise very seriously and lift weights at least once a week and do cardio classes another 2-4 times week (spin, kickboxing, step, etc). I've done psychotherapy- the doctors love to push that when they can't find a reason for fatigue, but I did get benefit from it.

Onto the UARS, I finally got diagnosed on June 13th using the ARES home test. Results from that showed: RDI of 9, very loud snoring, frequent heart rate variability. 13.4% of my sleep was REM and latency was 9 minutes. It took a couple weeks of finding a mask and I still don't love either of the 2 I use, the Swift FX and the Go Life for Him pillows. Originally the pressures were set between 5-20 and have now been narrowed in between 5-12. My median pressure is 6, median leak is 0.
So basically since the end of June I've been with a decent mask, use the mask all night and during naps. I'm not feeling a whole lot better. Advice? Do you need more info/graphs? Do I give it longer?

[Bompa]

Hang in there.
It sometimes takes a considerable amount of time to get things comfy and to get used to using the apparatus.

Someone will be along shortly to give you detailed advice.

Take Care

[trish6hundred]

Hi allielb83,
WELCOME! to the forum.!
I want to encourage you to stick with CPAP tharapy. It takes time to get used to it and the mask is the hardest part of it all, PATIENCE is certainly required.!
Hang in there for more suggestions and best of luck.

[RonWessels]

It would be useful to see some of the detailed data that your S9 Auto gathers during a typical evening. Have you considered downloading some free software (either SleepyHead or ResScan)? Either will work.

The data will show a pressure history over the evening, which will let you know if your pressure settings are limiting what the machine feels is the "proper" pressure for your treatment. It will also show you the events it detects (apneas, hypopneas, flow restrictions, snoring) as well as mask leakage history.

[allielb83]

I do have both Sleepyhead and Resscan but honestly, I don't know what I'm doing with it and nothing seems to stand out. The RT at the company dealing with me is happy with the numbers. I can post info if it would be helpful- what info would be helpful?

[RonWessels]

The top 4 graphs from the daily graph set from SleepyHead would be useful to see if there's anything obvious that we can spot.

[allielb83]

[attachment=442][attachment=443] I really hope I did this correctly! With ResScan there is a way to just save reports as PDF but I couldn't find an easy way to export with Sleepy Head.
Thanks for the words of encouragement. After looking for an answer so so long, I'm not about to give up now. I want to stick with this and be as proactive as I can be.

---

Oh I should have mentioned those times are wrong. I typically go to bed between 9-10pm...not that it really changes things for the graphs.

[RonWessels]

Well, nothing screams out. I see that you have an EPR setting of 2, which is bottoming out your exhale pressure when you are at 5.

While I am not a doctor, if those were my graphs, I would be tempted to increase the lower pressure setting from 5 to perhaps 7 to see if that helps get rid of the obstructive apneas. I notice that every time your pressure drops to 6, it quickly jumps back up again, so stopping the decline at 7 might be useful. And it's not a particularly large increase in pressure, so you shouldn't really notice it.

Let me know what you decide, and if you decide to try it, please do let me know how it works.

Going back to the plots for a moment, do you understand what those plots you posted are telling you (in terms of data, not interpretation)?

[Paptillian]

So basically since the end of June I've been with a decent mask, use the mask all night and during naps. I'm not feeling a whole lot better.

You're exactly where I am. I started therapy on June 20th. My pressures and leaks are similar; AHI is a bet less, but we're both doing well in that regard.

I know I'm sleeping better but I'm still waiting for the "I feel alive!" day to come. I think it's a combination of factors (for me, at least):

1. I have years of sleep debt to repay.

2. I feel best when sleeping between 8-9 hours. 7 or fewer and I feel like I didn't sleep. My theory is this relates to problem #1. More than 9 (yes, I've done it) and I feel foggy all day. Problem is, getting 8-9 hours every night has been next to impossible.

3. I have poor sleep habits that I developed in college and am still trying to fix. I have gone many nights without going to bed at all. I've gone years with 4-5 hours of sleep on average (which I now know was poor/obstructive sleep). I still go to bed much later than I should, especially on weekends when I tend to sleep really late and sleep in late. My wife, who doesn't have OSA, has similar sleep habits. She comes to bed even later than me on some nights, waking me up. She also prefers to watch TV in bed or be on her phone with a bright screen... which we fight about all the time. When she wants to continue watching TV at night she goes downstairs and uses the living room TV, which I can still hear quite well echoing up the stairway (even on low volume).

#3 is obviously a personal problem and I need to carry my own cross in that regard. But #1 and #2 might be relevant to others.

The good news is that with CPAP I've been actively trying to get more normal sleep. I aim for 8 hours. Doesn't always happen, but CPAP is at least helping me set goals and work toward them. Knowing I have a medical condition, I don't downplay the importance of sleep like I used to and I want the therapy to work.

Do you have any sleep habits that you could clean up maybe to help get you feeling better sooner?

[allielb83]

RonWessels, I somewhat understand what AHI, FLow limitations etc are, I just can't interpret very well. I will make the change you suggested after my last follow-up with the company I am getting my CPAP from. They can be a bit territorial and would probably not appreciate that I've made changes. Hopefully that will happen in the next 2-3 weeks.

Paptillian- thanks for the suggestions. I would say my sleep hygiene habits are pretty good. In fact, my husband has pretty bad restless legs and we currently don't even sleep in the same bed, since I found he was waking me up with that (crummy for newly weds like us!!). I agree that I likely have a sleep debt to repay. I have seen positive changes- I rarely get up to use the bathroom during the night. Getting out of bed in the morning is easier. BUt I am waiting to feel a bit more normal.