For more than a year, I have had constant, debilitating fatigue. I also have vision problems including blurred vision, trouble focusing and large "floaters." I have trouble falling asleep and staying asleep at night and I have irrestitable daytime sleepiness. I have trouble remembering things. I am an editor and grammar specialist and now have problems finding the right word. I had to take a leave of absence from my job because of this.
I have had many tests to rule out the usual suspects such as anemia, recurrence of sarcoidosis (in remission for a couple of years), various cancers, apnea, heart problems (no high blood pressure or high cholesterol), diabetes, etc.
The sleep study that ruled out apnea showed low oxygen at night. I spend 80% of the night under 90%, dropping to as low as 81% at times. I recently went on oxygen at night (2 liters) and it seems to help somewhat. The test also showed very little REM or Delta sleep. Apparently I had one short period of REM just before they had to wake me.
I still can't fall asleep and stay asleep well at night, even with Lunesta, Ambien or Ambien CR, but I have overwhelming urges to sleep in the day. For example, I can be working away at the computer and while waiting for a process to finish, I will fall into fairly deep sleep, complete with strange dreams or "visions", then wake up within a minute or so. If I lay down or sit in a comfortable chair, it's all over.
My doctor prescribed ProVigil (worked up to 200 mg), which does help with falling asleep during the day, but it feels like "on the surface" awake while being exhausted underneath. I have even more trouble falling asleep at night since taking it, especially when I take it twice a day as prescribed.
My Pulmonologist doesn't think the sleep problems are related to sarcoid. I know there is such a thing as neuro sarcoid but I don't know if it would cause any of these symptoms.
Other conditions: bipolar disorder, arthritis (both diagnosed after taking prednisone for sarcoidosis), Hashimoto's thyroiditis (stable for years, TSH now has been as high as 6 and as low as .03 in the past 9 months).
I am not getting anywhere with my PCP. She really tried for a while, but she seems to have given up on me. I feel so depressed. Some of the symptoms are treated somewhat by the oxygen and ProVigil, but I still can't function at anything like capacity and I don't know the root cause of the problems.
My goodness- how can they rule out apnea with those results? Obviously you're not breathing riught due to apneas- apneas mean a stoppage of breathign which can be caused by either a physical problem (like being overweight, soft tissue is swollen in back of throat) or due to neurological problem in which case, the apneas would be central apenas. There is absolutely no other reason that your night-time oxygen would decrease to htose dangerous levels except for the fact that you either stop breathing, or have an oxygen transport/utilization problem possibly due to lung function.
The fact that you are not hitting REM also is VERY indicative of sleep apnea- Get another test done and have your sleep technician AND your doctor explain exactly why they don't think it's sleep apnea- all the symptoms and physical results you mention are exactly what sleep apnea causes. I highly suspect that you've been misdiagnosed on the sleep results.
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