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Toxins, Hypopnea, CPAP and more!

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Posted by columbo on March 08, 2010 at 12:54:13:

Hello,

Please read all of this. My main question is about what is in "quotations" below.


No amount of sleep is ever refreshing, ever. This has been a problem for over 10 years. I have been a mechanic for 36 years. Exposed to lots of neurotoxic chemicals. I have multiple ABNORMAL brain imaging scans that show damage and reduced blood flow through certain parts of the brain and a problem with the way the brain metabolizes glucose, among other problems. No one has the huevos to say the abnormal scans are due to toxic exposures though. Typical Western Mainstream Traditional Medicine POLITICS. So there is lots more going on than a simple sleep disorder such as OSA. Mine may be "non-treatable."

I do not stop really stop breathing for very long or very often during the night. I have hypopneas. A few central apneas and spontaneous EEG arousals. Back in 2003, they were 15/hr. O2 sat was 87% though. I used a CPAP for 3 weeks/10 hrs. a night. No relief. I even called in sick during that time with the CPAP on my face....I sounded like DARTH VADER! After 3 weeks of no improvement, I took the machine back to the doctor. He did not say that I didn't use it long enough or suggest to give it another month. He did not suggest doing another sleep study to see if the pressure needed to be adjusted. He said, "Well, we tried." He said that normally people notice an improvement within a few days and can't imagine life without it! But I have also heard that the longer you have had OSA, the longer it takes to feel improvement.

Now the Stanford Sleep Clinic says AHI is 46/hr. But I don't feel my sleep is any worse. Could it just be the difference in the parameters of the testing procedures? Interestingly, Stanford does not have a "snore arousal" data on their test results. I don't snore anyway, but snoring and sleep apnea seem to go hand-in-hand. Hmmm...

The latest findings are 1 central apnea for 10 seconds, 5 obstructive apneas for 13 seconds, and 385 obstructive hypopneas. Minimum O2 sats to 89%. Total number of desats less than 90% was 3, duration was 9-36 seconds. Desat index 0.028.

Of special interest might be that I have too much carbon dioxide in my blood while I'm awake during the day. This level is said to be equivalent to someone with severe emphysema, but my lungs are fine. The doctor did some other tests (Heart Rate Variability) that showed I have dysautonmia that is causing "low respiratory drive" that also results in feeling lightheaded on exertion because my blood pressure drops instead of rises under exertion. I think this is caused by the chronic neurotoxic exposures and is indicated in the abnormal brain scans. Again, no one will connect the dots!

I had just started using CPAP again; latest Respironics REMstar Auto w/A-Flex and C-Flex and system one humidifier. A "550" model?

The machine worked okay, but I found the mechanical noise (not airflow noise) very annoying. The intake noise was loud too. Nicely build and user friendly machine though!

I accessed the Clinician set-up to read the data. Pressures were set at min 10 to max 15. 90% pressure was 11.5. AHI was 1.5. I used it for 3 weeks (10 hrs/night) with NO improvement in getting refreshing sleep or feeling less tired during the day. I do NOT feel "sleepy" during the day...just TIRED. RX was for 12-15. Oh well!!

I exchanged it for a ResMed S8 Autoset II. It is quieter to me, but not as "user friendly" to retrieve data, etc. I did access the the Clinician settings and found the hose length set at 2m and my hose is 10'. So I changed that to 3m. AHI is higher at 5.6 so far (2 days.)

I assume the only difference between the Autoset and Elite is the "auto" feature, so the manual you have in pdf for Elite is close enough. If it is different, please let me know and I will "obtain" one.

I can tell you this...I never had too much humidity with the Respironics System One set on 2 or 3. Setting the ResMed AutoSet II at III flooded the hose!! It started to gurgle in the middle of the night and my mask had water in it too. I had to lift the hose to let the water drain back into the tank! So now I set it at 1.5 (can't feel the heater getting warm at any lower setting) and will try it again tonight.

"One problem I am having during the night is that the little "valve" that controls the airflow from your nose into your lungs "relaxes" and the air is allowed to enter my mouth! That makes my cheeks puff out, then eventually makes my lips open and let the air leak out. I don't know how long that goes on, but when my mouth is really dry, it wakes me up!! Then I salivate some and go back to sleep. Repeat 1/2 dozen times a night or more. The DME rep said he never heard of such a thing, even when I demonstrated it to him with the CPAP ON! My doctor only suggested a chin strap, tape, or full face mask, but did not even seem familiar with the condition I am explaining! She said that my jaw MUST be opening FIRST, but that I'm just not aware of it. Chin strap will not stop it because my jaw does not open! Tape over the mouth? Then I can't yawn! And my cheeks will still be puffed out like Dizzy Gillespie! Full face mask? Tried one and can't get it to seal. Normally I have some slight upward pressure of my tongue in my mouth. That's just the way I am! If I relax my tongue while I'm awake using CPAP, I can make this same thing happen. So just what is happening that my tongue is closing off this "valve" normally, but when I sleep, this muscle relaxes and allows air to fill my mouth? The machine registers this as a mask leak of course, but that's not what is happening."

The DME representative said I don't look like your "typical CPAP user." I'm a 57 year old male, 5'6" tall and weigh 160lbs. and I don't snore! So I question the data in my recent sleep study.

I am NOT sleepy during the day!! But I am very tired, fatigue easily, have trouble paying attention, focus, alertness, concentration, etc. I can't nap during they day because I am not sleepy! So this is a very complex medical condition that goes beyond the limits of the various specialists I have seen. And I have seen over 40 doctors in the past 8 years!!

And please don't get me started on how HMOs tell you that you only have somatic symptoms caused by depression!! I dropped them at the end of 2002 before the killed me and went with a PPO plan to take control of and direct my own medical/health treatments. BUT I still ran into their politics. Oh well!!

Thanks so much for your time. Any helpful advice would be appreciated!

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