Still tired after all these years...

[coffee]

About 15 years ago I noticed I was very tired during the day and my energy levels were low. I saw various doctors who examined me, tested my blood but never considered sleep apnea because I am thin and didn’t fit the profile of the typical Obstructive Sleep Apnea sufferer.
Only after my, then girlfriend - now wife, discovered that I stopped breathing at night and I passed that info to my doctor was I sent for a sleep study. It turned out I had an AHI of 47.
I was given a CPAP machine and a basic nasal mask and sent on my way.
I then began the arduous process of trying to live with a mask and machine.
I went from CPAP to APAP to BiPAP autoSV.
From nasal masks to full face masks to nasal pillows.
From having sleep apnea to complex sleep apnea.
My compliance is good, I use the machine nightly.
I have succeeded in reducing my AHI from 47 down to around 5-7.
Unfortunately, my daytime sleepiness and energy levels have not increased.
I drink loads of coffee daily with minimal effect. I have been prescribed Provigil and Nuvigil without success.
My sleep doctor fears my failure to recover may be due to the years my OSA went misdiagnosed and untreated.
This is not good.
Anyone have any ideas?
Thanks

[Julie]

Hi - I wonder if the daytime coffee is not affecting your sleep without your realizing it... kind of just enough caffeine in your system to unsettle sleep stages, even if it doesn't keep you awake in the daytime. I also wonder when you last had a proper check-up for anything besides apnea, with labwork, etc. And you say you've tried lots of masks, but how well did the FF ones fit and work - and did there seem to be any difference in computer stats (assuming you use them...??). What machine (and model #) are you using now, and what mask?

[coffee]

Hi Julie, I had a check-up about a week ago with full lab work. Everything came back fine.
I use the Respironics BiPAP AutoSV with heated humidifier and the Resmed Swift FX nasal pillows.
I have a bump on the bridge of my nose and an angular face that makes nasal and full face masks impossible to seal.
I don't check my computer stats very often. Last I checked, the software for EncorePro would not work on a MAC, so I have to get my data when I visit my sleep doctor and they download it for me.
I've tried reducing my coffee intake, but it makes it even more difficult to get through the day...

[jabman]

My sleep doctor fears my failure to recover may be due to the years my OSA went misdiagnosed and untreated.
This is not good.

I"m not sure this would be the case. I beleave that I has OSA long before I was Dx'ed at age 38, probably since High school. I know when I first met my wife she complained that I would stop breathing at night.

I think Julie is on to something, it could be some other health issues. It can't hurt to go find out and rule things out.

[Bill44133]

How is your Vitamin D level on your blood work? Did they check that?
The symptoms of vitamin D deficiency can include tiredness and general aches and pains.
The Vitamin D Council suggests that a level of 50 ng/ml is the ideal level.

I wish you good luck

[kteague]

I'd like to first commend you for your perseverance. Sounds like you've been down a long road with this. I can only suggest at this point to deal with specifics and not generalities. That would include getting copies of your files including all reports, test results, machine downloads, etc. and going over them with a fine tooth comb for anything questionable. There have been a couple times there were things in test results the doctors never conveyed to me or even acknowledged they saw. You need to know specifically what tests were done to see exactly what they've ruled out and what has not been tested. At one point in my treatment when the doctor came back with more "normal" results in a dismissive tone as if that was the end-all answer, I told him that I didn't need to know what wasn't wrong, that I needed to know what WAS wrong, so to not stop testing until he found an answer. A negative test result is not an answer, it is a question. In your case, I think seeing hard data on your OSA treatment would be a priority since this is a known issue. Would be a shame to put effort into chasing rabbits only to have to circle back and find your sleep is still problematic. Maybe your doctors are on top of things, but there's too much at stake to assume. Bring what you find out back to this forum. I'm not saying the input here would supersede medical wisdom, but the collective eyes might see something that merits pursuit. Good luck going forward.

[ironhands]

I wouldn't rule out depression, even if you don't feel "sad", generalized depression can often manifest physically. Given that it's been going on for so long, well, you're getting older, things slow down. If provigil isn't helping, might be time to look into adderall.

[Julie]

There are new masks now, such as the Hybrid, which leave your nose out of the equation, but still cover your mouth.

[JDS74]

Two things to try / check.

1) There are really cheap Windows PCs available for less than $400 or even less. That will get you able to get to your data daily and see what's going on.

2) get a copy of you sleep studies to see if there is reference to any kind of movement disorder. These can make you extremely tired even though your stats otherwise look good. With your machine, the wave data graphs can really show up arousals related to plmd/rls. It looks like a little irregular breathing followed by a few breaths in ventilator mode. That's an arousal followed by a short centrals period during the transition back to sleep.

[coffee]

My vitamin levels were checked, D, B-12, etc. Anemia, Testoserone, Lyme disease, etc.
And I forgot to mention that we have tried a slew of various antidepressants including Adderall.
I believe any depression symptoms are just symptoms of the sleep disorder and it's accompanying fatigue.

I'm seeing my sleep doctor in a few weeks.
Thanks for the support and suggestions!

[ironhands]

get a copy of any sleep studies on record, and check specifically how much time you're spending in each sleep phase, as well as your REM onset period. Many sleep clinics (and sleep doctors) are more versed in pulmnology, and see every case as being that, when there could also be neurological problems as well. My first time through my doctor completely ignored the highly abnormal REM latency, and didn't question the highly abnormal 0.0 AHI. My second one revealed an AHI of 15
My third (all of these are within the past 9 months) I had my AHI down to <5 with a CPAP (it's usually <1.5 at home), but still showed a highly abnormal sleep architecture, and an arousal index around 24 non-apnea related.

Sounds like you're in the same boat as me, but I'm drug free (for now) other than nicotine which has REALLY helped. I'm only in my second month of CPAP, it hasn't helped my sleep or alertness at all so far, either. Hoping provigil's still an option.

Couple things to note - Adderall's not an anti-depressant, it's a stimulant like provigil, can actually increase anxiety if that's a factor.

Anti-depressants can often INCREASE your sleepiness. When I was on Paxil I was sleeping 10-12 hours a night and having insanely vivid, and often lucid, dreams. When I was on Citolopram with a Ritalin supplement, I was falling asleep at my desk twice a day without warning. When I was on Wellbutrin, I couldn't sleep for days, until I'd pass out on a thursday night and wake up monday.

If you're off of those now, and had no major improvement, I'd say your symptoms mirror mine almost exactly, other than a higher AHI.

So... diet.... Have you tried going gluten free? It's hard but I had to and experienced improvements in a week. Untreated Celiac can have neurological complications, particularly to the sleep cycle, but if your B12 was fine, that almost seems unlikely if you aren't having any other gastrointestinal issues.

[BleepingBeauty]

You've gotten some good suggestions above. A couple of things stand out to me. Since you don't have access to the data, do you or your wife notice your mask leaking? That'll certainly compromise your therapy.

Something's certainly amiss. You haven't mentioned your pressure settings. If your sleep doc is the only person monitoring your data (and that's probably only happening once or twice a year), has s/he suggested any changes to your settings?

I'd be a raving lunatic by now if I was still tired after all this time on therapy...

FWIW, my first sleep doc wanted to put me on Provigil when I was still tired after about a year of good compliance. I had a brick, and neither he nor I had any data to go by; just compliance numbers. His pharmaceutical solution was not something I was comfortable with, and I refused the drug. Instead, I parted ways with him and bought a machine that would give me data (on CL, as I had no prescription). With detailed data and the help of this forum, I got my therapy in line. My average AHI has been around 1 for a few years now.

I wish you the best of luck in finding a solution that works for you.

[avi123]

Bleeping, you post that you have CSR. In the past you have used Auto CPAP. Do you agree that those with CSR should NOT use APAPs?

[kaiasgram]

coffee (love the username!),

I really appreciate your coming back to the forum with your story. I'm not so quick to just dismiss your doctor's concern about the possible reason for your failure to recover since starting PAP therapy. I'm now two years into my therapy and so far my story is the same as yours -- night breathing is well treated, compliance is 100%, lots and lots of tests looking for other causes of failure to improve, and nothing turning up.

There is some research pointing to neurological damage from untreated apnea, some of which seems to improve slowly over time, and some which does not improve. But it's a subject that is not discussed much here, possibly because those who fail (or mostly fail) to recover give up on the therapy, concluding it doesn't work, and they don't stay on a forum like this. Like you I plan to stick with PAP because at the very least it's 'damage control,' but the heavy unrelenting tiredness is tough to deal with. I also plan to keep looking for answers and not give up because I'm not fond of the 'permanent damage' scenario. And there may still be answers and solutions we just haven't discovered yet. I appreciate everyone's ideas here too.

I hope you'll stick around and keep us posted. I'm seeing a new neurologist next month and if anything significant happens I'll be glad to share too.

Thanks again for posting.

[BleepingBeauty]

Bleeping, you post that you have CSR. In the past you have used Auto CPAP. Do you agree that those with CSR should NOT use APAPs?

No, I wouldn't make a blanket statement like that at all.

... my story is the same as yours -- night breathing is well treated...

Hi, kaias. If coffee's AHI is usually in the range of 5-7, I'd say his night breathing is NOT well treated. Still, there are many other potential reasons for daytime sleepiness besides inadequate apnea treatment. *shrug*