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

[silent_one]

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.
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)

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
Sleep Study Specifics:
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)

[hava]

This a very simple natural approach to sleep/breathing problem.Do it and you will start to notice the benefits after a week.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

[Steven Y Park, MD]

Thanks for all the additional information. You should be able to find a dentist that specializes in sleep-breathing disorders that can also minimize any dental alignment issues.

I'm puzzled as to the oral surgeon's comment that surgery won't work unless CPAP works.  In general, for people with UARS, CPAP makes things worse.

Having a sinus infection implies that you'll have additional upper airway inflammation from your nose to your throat. This causes further narrowing and obstruction.

[silent_one]

Another excellent article on the subject is found here:
http://www.medscape.com/viewarticle/494651_1
"Upper Airway Resistance Syndrome-One Decade Later"

[silent_one]

For anyone reading the Upper Airway Resistance Syndrome article (URAS) is here:
http://www.medhelp.org/user_journals/show/42438

[silent_one]

"(see my article on UARS on this forum)"

I just read that article and it matches my symptoms very closely, I avoid sleeping on the back, mainly on the stomach, regularly get sinus infections and headaches that can last upto 3 hours or more.

My blood pressure has dropped as low as 100/50 but I was told its nothing to worry about, more recently its been low but not too low.

Sleep appears to further degrade when I do have a sinus infection, I'll suggest it to the sleep expert when I next see him.

Thanks,
Gareth

[silent_one]

Hey,

"Did your data card show any leaks, and do you have any other data regarding compliance?"

I assume it would but I did not see the data card, I was just told its working very well and its better on the straight pressure, there was mention of a drop from "4" to "2" I'm not sure what that figure represented though.

"Do you normally like to sleep on your back, side or stomach?"

Stomach, and sometimes side, but mostly stomach. Very very rarely on the back (supine) position.

"Have you looked into mandibular advancement devices?"

Yes, the first one advised that I would would lose the alignment of my teeth by a certain amount, since I've spent a fortune on invisilign (similar to braces), doing this did not seem logical.

So I might try and see if there is an alternative treatment that does not mis-align the teeth.

"I'm assuming you had a full thyroid panel."

Thyroid was in one of the several blood tests, among adrenaline and various other abbreviations I am not familiar with.

"If your problem is still a sleep-breathing related issue, then you may have upper airway resistance syndrome (see my article on UARS on this forum). Notice how high your RERAs are, especially in REM. People with UARS can be treated with CPAP, but sometimes the mask/machine itself causes arousals due to the extreme nervous system hypersensitivity of the individual."

Interesting, will have a read of that information.

"It sounds like you need to make sure you're fully optimized with CPAP before going on to all other options. Surgery should be the last resort, but based on a careful analysis of anatomic areas of obstruction, rather than being based on numbers."

Yes, possibly another sleep study with cpap this time, the first one left me $400 out of pocket on my medical insurance so will try and do another one somewhere else...

Surgery would be 20K and weeks off work so I'm avoiding that, the mandibular devices are about 1.2K or similar so I'll do some more research on them....

Thankyou,
Gareth

[Steven Y Park, MD]

Thanks for your detailed medical history. It sounds like you've checked everything possible. I have a few questions:

Did your data card show any leaks, and do you have any other data regarding compliance?

Do you normally like to sleep on your back, side or stomach?

Have you looked into mandibular advancement devices?

I'm assuming you had a full thyroid panel.

If your problem is still a sleep-breathing related issue, then you may have upper airway resistance syndrome (see my article on UARS on this forum). Notice how high your RERAs are, especially in REM. People with UARS can be treated with CPAP, but sometimes the mask/machine itself causes arousals due to the extreme nervous system hypersensitivity of the individual.

It sounds like you need to make sure you're fully optimized with CPAP before going on to all other options. I don't agree with your oral surgeon that only people who are successful with CPAP can benefit from surgery. Surgery should be the last resort, but based on a careful analysis of anatomic areas of obstruction, rather than being based on numbers. You should also see if you're a candidate for a mandibular advancement device.

[silent_one]

(continued from above)
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.

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 leaks or disruptions or....?

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).
Further General Information
*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 which I do 3 times a week.
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, it can happen more than once in a day (tired / awake / very tired / awake again)...

I am keeping a sleep diary but not sure what to do next.

Thanks, any help will be appreciated.