Hi! Sorry to hear that you're still struggling with your symptoms, are the doctors optimistic for achieving a solution? It seems you're particularly intolerant with the mask, isn't a dental device suitable for your case? My diagnosis is still "in progress"; after many thoughts, I decided to try again with the last sleep doctor and he requested a sleep study, especially for the analysis of legs movements and autonomic functions. I was very nervous and couldn't sleep well, but the doctor is now interpreting my signals and will contact me to explain the results. I hope he can find some clues, at least to confirm the origin of my mysterious symptoms and concentrate the efforts in the area of the sleep disorders. I'm quite confident this is the right direction, but I'm not the typical patient (too thin, too young, tired but not particularly sleepy,...) and this makes the goal very challenging....
Hi PatientVioletBear0961, it's a long time I don't access the forum, essentially because the visit with the new doctor didn't produce any result. He sent me to see a dentist, to check if I needed an oral appliance to advance my jaw; the dentist didn't confirm this indication and suggested that the erosion of my teeth was the result of reflux instead of bruxism. So, here's another round to a new doctor who prescribed the measure of my esophageal pH over a 24-h period. I'm really tired and my symptoms are getting worse. How are you? Are you now used to the mask? Improvements?
I've downloaded a free PC application: Audacity. It allows to program a recording session, specifying start and finish time. The resulting file can capture several hours and can be reproduced by the application, in audio and video (signal amplitude) mode. I recommend it, it's complete and easy to use. (Just be sure to disable the power saving options of your PC, to avoid they stop the ongoing acquisition while you're asleep).
Thanks for your support! I feel confident about the sleep specialist I've chosen, but I'm aware that my symptoms are not standard for a sleep disorder. I hope that the clicking sound, in addition to snoring, can suggest a diagnosis; have you ever heard this behaviour?
Congratulation for your results with the CPAP! I suppose that the tuning of the pressure will require less effort on your side, but I'm sure you now feel anxious to get some signs of improvement from the therapy. I wish you to see the light after this long tunnel!
My visit is planned at the beginning of August and I'm living this period in different moods; sometimes I'm optimistic, other times I'm afraid that the diagnosis will be negative again,.... This also depends on the level of my energy during the day. When you feel exhausted it's hard to think positive!
I'll let you know the opinion of this new doctor (University of Parma). At least I hope to come to a clear understanding of the quality of my sleep and its link with my fatigue disorder.
Hi! I hope that in the meanwhile you've improved your compliance with the mask, it seems a huge job. However it is good to be assisted by a doctor you trust in. For sure you know the frustration of struggling completely alone against a ghost... Good luck for your progress!
On my side... My ORL visit resulted in a diagnosis of deviated septum and enlarged turbinates, no way to fix without surgery. I'll mange to use a spray to reduce the congestion.
I've scheduled a visit with a new sleep specialist in Italy, selected because he's cooperating with Stanford in many research areas. He's specialized in the analysis of the EEG, specifically the CAP cycle. I cross my finger to receive a conclusive answer. My biggest doubt about the diagnosis of UARS is that I don't experience insomnia at all. I've recorded my nights with a PC app and found that I often emit a click synchronous with my breathing cycle. This is very strange....
And you? Any change/ progress? It would be nice to have a direct contact via e-mail. Do you know if it is possible to share the mail address in a private area?
I've also reconsidered other possible diagnosis, but it seems that I'm not compliant with any disease... The point is that I've no other signs, if I exclude fatigue and cognitive impairment, so also CFS is doubtful (and honestly I don't think this is my case, as my immune system seems very efficient...). To be precise, I can add that I have cold hands and feet and a mild orthostatic hypotension, but these are again very generic signs (altough associated with UARS clinical features).
Hi! Unfortunately Stanford finally replied that it is not possible to have a remote consultation. I'm searching for a sleep center in Italy that can make this diagnosis, but it's difficult to know in advance if they apply the proper criteria or just check the apneas and oxygen desaturation. In the meanwhile, I've managed to check my nose with an endoscopy, as my breathing problems are getting worst. Hopefully this test can activate a new diagnostic path leading to the assessment of the degree of severity of my obstruction and maybe to a serious analysis of its consequences...
Thanks for your feedback on flattening and desaturation! How are you proceeding with the mask? Any signs of improvement with respect to insomnia and fatigue?