2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
It's the age old issue of his sleep disorder.
He has an appointment with a Neuro that says he specializes in sleep (mostly in the elderly) in about 5 weeks.
I have results from his sleep study 1.5 years ago, as well as his 24 hr EEG about 8 months ago. Even got the hard copy of the 24 hour disk, hoping he will interpret it, as the Neuro at the children's hospital was primarily looking for seizure activity, and knew nothing about sleep interpretation.
Unfortunately, I don't think this new neuro will read the disk, because he didn't prescribe the test, and doesn't get the big bucks for it. He'll claim an insurance issue, and say the test needs to be repeated at his hospital. My intention is a second opinion of the data, not redoing all the tests. Or he'll likely say based on the scant report, were screwed and other then copious amounts of sleep-psych meds, there's not much left to do.
OKAY....SO......This was last night.
He asked me to sleep on his trundle. I hate sleeping in his room because it upsets me watching him all night, knowing something is VERY wrong that may not be fixable.....might even get worse.
He fell asleep easily. But, he would start to breathe louder and more rapidly, almost like he was having a bad dream. Then the rousing would follow. He would toss or turn. Then his breathing would settle a little. This repeated itself, maybe 4-6 times an hour for 9 hours.
He says he only remembers waking up 2-3 times.
But he admits he doesn't feel rested, but more like he does rise to higher levels of consciousness throughout the night. The days of closing his eyes and waking them on the morning are over.
What say you guys?
Help
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96233 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Tutu, but I know a few things.
1) He does experience all n-rem and rem sleep phases. It's the amounts that are not right.
2) He does not seem to have the normal number of sleep cycles 4-5, but 3. This may have been a testing phenomena due to poor environment, cannot verify at this point.
3) He rouses all through out the night. I do not know where his phase of sleep gets interrupted, if it's even in the same stage. Because it happens all throughout the night, I feel it's random, or perhaps as he is trying to achieve deep or REM sleep.
This is all I know, after having thousands of dollars of testing done by non-experts.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Has he been tested for sleep apnea?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Has his adrenal function been tested?
Posts: 4681 | Registered: Oct 2000
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I was hoping it could be breathing related Razzle, but the sleep study did not indicate sleep apnea. They had put some kind of thing in his nose, and used a pulseoximeter as well. I imagine that would have showed there, no?
No Sammi, no Adrenals have been tested. What do you suggest? I have a recipe for adrenals that includes cream of tartar, OJ, and something else....I need to look. The nutritionist gave it to us. Could adrenal dysfunction really cause this?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
2roads, if his cortisol level is too high at night it could cause him to wake up and/or not feel rested.
I think salvia testing is the best. I had it done and was diagnosed with adrenal fatigue. Based on my results, I was prescribed supplements. They help tremendously. My Lyme doctor uses Aeron Lab for testing, and insurance covers part of the cost (unlike ZRT lab).
Cortisol levels should be highest in the morning and decrease during the day, with the lowest level at bedtime. For the saliva test, you do four tubes--one around 7:00 am, one at 12:00 noon, one at 4:00 pm, and one at bedtime.
I hope you can get answers soon. I know it must be heartbreaking to see your son go through this.
Posts: 4681 | Registered: Oct 2000
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Thanks Sammi, it's so disturbing that this happened.
I wish we could both sleep. The sad thing is, is that my body could, but his can't.
Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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