I am 38 years old this month. Until last Fall, I had had no sleep issues in my entire life. I could easily fall asleep whenever I wanted and wake up refreshed. I went overseas (Egypt) and caught some virus there or shortly thereafter. This made me sick for three months, first with flu-like symptoms, and then hypertension and tachycardia. Eventually, I recovered but, during the illness, I developed a sleep problem.
I have snored moderately for years but the only noticeable effect was on my wife. I weighed 235 last year but between changing habits and losing 20 pounds while sick, I've been down to 195 - 200 since my illness. (I am 5' 10" tall.) My BMI during my last study was 28.1.
Starting during my illness, whenever I fall asleep, I get muscle jerks. This is similar to when one's leg kicks when falling asleep. The first sign of my sleep issues were a difficultly falling asleep as I would get these starts EVERY time I tried to sleep, over and over again, up to ten or more in an hour. They can be in a shoulder, my hand, a leg, my chest, etc. Each time, they wake me up as I am falling asleep. After an hour or more of this, I would just wind up dozing and not going to sleep, as if my body had given up on sleeping. This later seems to have developed into a generalized issue in falling asleep (after months or it).
They put me on Klonopin (Clonazepam) and a waiting list of two months to see a local board certified sleep doctor who is also a certified neurologist. In the meantime, my old doctor (who I have since left) sent me to two sleep studies at a local, as it turns out, kind of quack sleep clinic trying to sell machines. They diagnosed me as having a mild apnea (5.1 events an hour, with 5 being the threshold of apnea).
Later, when I saw the neurologist/sleep doctor, she sent me to a local hospital that she works with for a seizure montage, because the jerks could be neurological. They were much more competent in the measuring though it took months to get in for the study.
The final diagnosis by the neurologist/sleep doctor was there was no evidence of seizure activity in my brain. What she did find was highly fragmented sleep.
Details from doctor's report:
My RDI (combined) was 30.6. I had 0 apnea events, 3 hypopnea events, and 175 RERA events.My sleep architecture:
* Delay RED sleep onset latency
* Sleep fragmentation: 47.6 awakenings or arousals per hour. "Many of these events were not associated with any 'scorable' causative even, thus are classified as 'spontaneous arousals'".
* Total sleep time: 349.5 minutes
My Respiratory data:
The patient demonstrated
* mild sleep apnea
* light snoring and occasional snorts
* The apnea/hypopnea indes was: 0.5
* There were a significant number of respiratory events (respiratory event related arousals) consistent with upper airway resistance, raising the RDI to 30.6
* O2 saturation nadir 91%
* Time in hypoxia below 89% saturation was 0%.
Cardiac was WNL (within normal limits)
No PLMs noted.
Patient slept in prone position most of night.
Diagnosis:
Axis A:
obstructive sleep apnea (UARS) - 327.23
sleep stage dysfunction - 780.56
Axis B:
Polysomnogram 95810
In 349.5 minutes of total sleep time, I had 264 arousals, 13 awakenings, and 0 REM awakenings.
So, she diagnosed me as having UARS, which I had never heard of before. Explaining that while I didn't stop breathing, my body was reacting to restricted airflow by arousing or awakening me, increasing heart rate, and causing my sleep to constantly fragment.
Subjectively, it can take me an hour or two to fall asleep. As I fall asleep, I get these jerks, which wake me. Some nights are worse than others. If I don't fall asleep during the first two hours, I generally just doze all night. On a "good" night, if I do fall asleep, I generally awake around 3:30 to 4:00 AM (having gone into bed around 11:15 PM) and then sleep lightly, on and off, until I get up around 8:00 to 8:30 AM.
She said that CPAP would be a possible solution but she doesn't recommend that to insomniacs normally. Instead, she sent me to a special dentist, Dr. Alvarez of Fremont, CA, who made a mouth piece that repositions my tongue forward. I've had that for a bit over a month now. There may be *mild* improvement but not much. I'm getting a new night time mouth piece this week with a flexible bar that will move my jaw forward while sleeping.
I'm not sure what to do for UARS if this mouth piece doesn't help. Part of the problem is that my sleep doctor only sees sleep patients once a week (the rest is here neurology practice). She appears to be highly regarded (my other doctors spoke well of here spontaneously and they were in different practices) but I always have to wait 1 to 2 months for appointments. Before the sleep study, she seemed convinced that my sleep issues were anxiety based (despite the jerks, which she still cannot explain) but she quit mentioning that once she got the final sleep study back.
If anyone has any advice, suggestions, or knows of good sleep doctors for things like UARS near the Bay Area (San Francisco), I would appreciate it. I'm kind of at my wits end and I start graduate school again for a doctorate in a month and I really feel apprehensive about doing it with this sleep disorder. This whole thing has been going on for about seven months now.
Right now, I take 8 mg of Rozerem and .25 mg of Klonopin on alternating nights because my doctor doesn't want me to take anything nightly for fear of addiction or dependency. They both help (on good days) but neither is the kind of drug that will knock you out at those doses and I want healthy sleep.
Al
