Undiagnosed sleep issue > 13months. Sleep apnea? Neurological? Something else?

[silent_one]

Hi,

I'll try and keep this to the point but its difficult to summarise such a long period of time :(

There are a variety of issues associated with this, so I'm not sure where to start really, my sleep has never been perfect but since traveling to South America / USA during my last overseas trip, my sleep appears to be worse.

At high altitude, even after taking altitude sickness tablets I was very sick at anything above 2400 metres, including spending 4-5days going from lower to higher elevation on a tour, I got very sick, the altitude sickness tablets brought things under control (to a point) and I simply had some difficulty sleeping even when in the USA (sea level) and back in Australia.

The symptoms are that of general sleep deprivation, on a bad day:
* Irritability
* Headaches (often for a few hours or more)
* General tiredness / difficulty staying awake but not to the point that I will fall asleep
* Eyestrain
* Lack of concentration
* Difficulty remembering things (not severe)

Napping on weekends during the day sometimes help sometimes doesn't.

As far as the doctors tests have gone, a variety of blood tests have been done, all cleared including:
*24hour holter (ECG) monitor showed some minor increases from 60 beats per min to 95 beats per min during the day without exercise, adrenaline was cleared as a cause
*Cardiologist, exercise test showed very good heartrate under exercise

Sleep / respiratory expert has:
* Cleared asthma as a problem, I was diagnosed when younger and still have problems breathing occasionally
* Organised a sleep study

The sleep study showed:
*Mainly during REM sleep hypopnea's (choking) occurring.
*Other stages of sleep showed few symptoms
*Oxygen level never dropped

CPAP:
I have used CPAP for 2-3 months, there appears to be little benefit, I switched from APAP?, the automated pressure version, to a constant 12 with the machine releasing pressure when breathing out (C-flex), this was with a Respitronics machine.

Medication
I am currently using Modafinil (aka modavigil and I believe provagil), I can take 1 (100mg) tablet and this gives mild insomnia, 2 tablets is quite a bit of insomnia, and 1/2 a tablet is enough to keep me awake but after 2-3 weeks it doesn't seem as effective as before.
It does seem to greatly reduce the effects of the lack of sleep, but cannot be mixed with alcohol at all or I feel quite sick (after <400ml of beer or similar).

Oral / Maxillofacial surgeon
I do have trouble spelling this surgeon's name, the xrays showed a narrow section of approx 11mm or just under 11mm in the airway, but I have been advised unless CPAP has been successful then surgery wouldn't be the best idea.

The respiratory / sleep physician still believes there is something wrong, and the last lot of blood tests were cleared without issues again (approx 10 different items were tested incl testosterone and a number of other general tests).

The next step will likely to be to see a Neurologist, has anyone been through a really long diagnosis like this?
I've been seeing the GP for about 13months about the issue, and the sleep physician for approx 8 months.

I'm struggling to find a solution or which type of specialist I should see next in Australia.....

Thanks

[KatEyes]

It should show an increased leak rate I think. I'm not as knowledgeable about the subject as some over on cpaptalk where it's been discussed a lot, but I have read that mouth leaks can make the data not so reliable. That's why I suggested googling in hopes you could find something more specific on the topic. Sorry I can't be of more help.

[silent_one]

Interesting, but wouldn't mouth breathing show up when assessing the usefulness of the CPAP machine through the card that records data?
I mean it should show something in the summary shouldn't it?

[KatEyes]

You might want to google something like 'sleep apnea mouth breathing leaks' to find info on how cpap treatment is adversely affected by mouth breathing. The need for cpap is not based on how one feels or doesn't feel or how long it takes, but on diagnosis. Also, timing till one feels better is most realistically assessed by counting the time as starting after one knows their treatment is optimized and all the 'bugs' worked out.

Good luck going forward.

[silent_one]

Hi,

"Also, are you still using the autopap machine, but just have it set to a constant pressure or did you switch machines? Many machines you can see treatment data in the window and find out if it is resolving your apneas/hypopneas, or the supplier can read the data."

There was a few weeks of data, and we changed from Autopap to Cpap with c-flex and a ramp rate on the same machine, with a nasal mask only.
The little card in there showed an improvement on CPAP with the number dropping from 4 to 2 not sure what that number was, if it was number of detected disruptions or not.

"Some people do have an inset jaw that narrows the airway, and that could make a difference with cpap."

Yes, inset jaw, mildly.

"About your sleep study, it is not unusual for most events to happen during REM. What did your report say about arousals? Even if your oxygen didn't drop, if your events cause arousals, the constantly disrupted sleep stages can contribute to your symptoms too."

Sa02% min average 97% during non-rem and 96% during rem.
Non-rem hypopnea 1.8, during rem 21.7.

Total RDI = 4.2 (?)
Mean hypopnea was 19.1c maxmium apnea 21.1sec and hypopnea 31.6sec

Arousals, REM:
ARO RES 5.0
ARO Limb 1.7
ARO SPONT 10.0
RERA (respiratory effort arousal index) 11.7

Non-rem:
ARO RES 0.7
ARO Limb 0
ARO SPONT 9.5
RERA (respiratory effort arousal index) 5.4

Bruxism is zero for both.

The summary mentions mild snoring of 56.1/hr and out of phase breathing.
Baseline heart rate of 53bpm.

I should mention that my BMI was 29.8 at the time, but this is partially muscle my body fat level was somewhere around 18% at the time (80kg / 165cm)

"Sorry I couldn't be of more help. You asked if anyone has had a prolongud time of diagnosis  - yes, I did, and many others I've read about on the sleep boards."

Interesting, both doctors are away for a while but I'm hoping something turns up some results.

"My suggestion is that you backtrack and make sure you have optimized your cpap treatment before searching any further. Best wishes."

Yes, I might have to go back on CPAP again to see if it helps, but I'd expect more benefit after 2-3months, it could be more than sleep apnea...

Note, I've ruled out the dental device for now because the one I was looking at would mis-align my teeth which I have had aligned in the past 12months....

Thanks for the reply!

[KatEyes]

Sometimes it can take months and always requires consistent use of cpap to address symptoms of sleep apnea. No matter what else the doctors may find contributing to your daytime sleepiness, it won't change the issue of you needing cpap. You may have more than one thing going on, but that doesn't mean you should stop cpap.

I don't know what style mask you are using, but if it is not a full face mask (covering nose and mouth), then opening the mouth during sleep lets the treatment pressure escape out the mouth and not keep the airways open. That's a common cause of ineffective treatment.

Also, are you still using the autopap machine, but just have it set to a constant pressure or did you switch machines? Many machines you can see treatment data in the window and find out if it is resolving your apneas/hypopneas, or the supplier can read the data. That would seem to be an important piece of the puzzle, to ascertain that the pressure is doing what it is supposed to do. Collecting a couple weeks of data could pinpoint problems.

About surgery... it really is too soon and with not enough info for cpap to be considered to not be working for you. I'm not real informed about it, but you may want to find out how off that 11mm point in your airway is from the norm and exactly what surgery it would take to fix it, then read up on it. If the narrowing is tissue, cpap would likely blow past it without much trouble. Some people do have an inset jaw that narrows the airway, and that could make a difference with cpap. Again, not enough information for you to make an informed decision, as some surgieries are more traumatic than others, and success rates have to be considered. The fact that a specialist did not recommend it says a lot.

About your sleep study, it is not unusual for most events to happen during REM. What did your report say about arousals? Even if your oxygen didn't drop, if your events cause arousals, the constantly disrupted sleep stages can contribute to your symptoms too.

Sorry I couldn't be of more help. You asked if anyone has had a prolongud time of diagnosis  - yes, I did, and many others I've read about on the sleep boards. At one point I gave up on using cpap, but knew I was harming my health so I made another effort with determination to make it work for me. Good decision. My suggestion is that you backtrack and make sure you have optimized your cpap treatment before searching any further. Best wishes.

[silent_one]

I should have mentioned, 24 year old male.
Normal sleeping pattern is usually sleep at 10PM wake at 7:30AM (to an alarm) on weekends this can vary as much as sleep at 11PM wake a 9:30AM (no alarm).

On weekends I often feel worse, heavy exercise (the gym) appears to improve the wakefulness in most cases.

Furthermore on some days there is a feeling of awakening which varies, sometimes I can wake at 9AM and not feel fully awake until 3PM, other times I don't get this feeling at all or it happens earlier in the morning...