I've a question about your sleep test, if possible. How much was your flattening? It should represent a measure of flow limitation. In my case, it was present in 20% of my breaths, but this value was not considered pathological.
If you've already excluded hyper-arousal (via heart rate variability test?), I can suggest that the insomnia can be a sort of body conditioning. I've read somewhere that the patient avoids to sleep beause he associates it with the struggle to breath. Are you confident in the sleep doctor at Stanford? Do you think he's going to examine all your sleep anomalies? After 25 years of suffering, you must receive answers and solutions!!
I can't imagine how difficult your nights can be, I've never suffered from insomnia. I used to go to bed and sleep until morning; now I wake up 2 or 3 times per night but I fall asleep in a few minutes. That's why I've never suspected a sleep disorder, and maybe it is not my real problem. But your symptoms are very suggestive, if your sleep efficiency is so low, then the brain cannot consolidate memory and recover from the day. I'm not informed about the possible reasons for insomnia, I've read that UARS is a strong trigger, but probably you've some additional factors that make you stay awake for hours. Sleep science has a lot to discover...
Last question: how were your oxygen levels? My lower level was 91.3%. I had 6 desaturation events of 3.5% average.
I definitely must find a sleep center that can diagnose UARS, it's not so easy in Italy, they seem to manage only OSAS. I've contacted Stanford a week ago to understand if it is possible to receive a remote support, they replied to send all the medical documents translated in english for a first evaluation. I hope this is the right direction for my diagnosis! In the meanwhile I'll try the nose products you've suggested. For the visit with the ear nose specialist, I would wait to have a diagnosis for my symptoms before proceding with a treatment.
It's interesting to know that Stanford assigns a diagnosis of UARS with your index of respiratory events. Did they confirm that the results of your sleep study are compliant with the symtoms you refer? The specialist in Italy explained that the cognitive impairment occurs in case of severe OASA, but of course the experience at Stanford is far superior... The story of Joe suggests that the deficits can be compensated using the mask for some months, I hope this is the case for you as well, I know the frustration that this situation can produce, expecially when protracted for such a long time...
I'm glad to meet someone with UARS! Also my history is very long, it's 15 years that I suffer from symptoms of fatigue and cognitive impairment (exactly like yours, slow processing, bad working memory, poor attention and executive functions, a status that can be defined as "brain fog"). I've visited all the possible specialists (neurologists, rheumatoligts, experts in infectious diseases, internists, nutritionists, unorthodox doctors,...) and recently I've met an expert in chronic fatigue syndrome. Everybody says that the symtoms I refer are not compliant with their area and suggest a psychiatric. I'm sure this is not my problem, but I tried also this direction, again with no result. At the end, everybody tries to convince you that you're fine, maybe you've only too high expectations....
I would like to try a CPAP, but I've no idea how to start. I suppose they require a calibration, based on the degree of severity of the sleep disorder. I'll take info on possible test with the machine in Italy. Are you under therapy? Diagnosed with OSAS?
The cause of my snoring is probably an enlarged turbinate. It's difficult for me to breath during the day as well and the way the obstruction comes and goes matches with hypertrophic turbinates. Maybe I can try some specific products, strips and spray, and see if they help with my fatigue and cognitive performance. This can represent an important clue....
