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Undiagnosed sleep issue > 13months. Sleep apnea? Neurological? Something else?
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
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)
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).
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.....
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.
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
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)
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).
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.....
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.
Just for closure, I posted here: http://www.medhelp.org/posts/show/743191?camp=26 and got a medical answer which was fantastic, I'm following up on it now and seeing if this could help...
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