I'm so happy to have found this group of supporters! My story sounds like so many others in one form or another.
I was diagnosed with Fibromyalgia 20 years ago. Needless to say, there have been many medical conditions that have been added to my history that go along with Fibro. Insomnia, extreme exhaustion, needing to sleep at the drop of a hat for 3-4 hrs. during the day, then not sleeping at night or going to sleep about midnight and sleeping another 7-10 hrs. I was also diagnosed a few years ago with chronic sinusitis and none of the "usual" treatments worked for me (Flonase, nasal sprays, allergy meds, etc. My Neti pot helped the most but now my nasal passages are so inflamed even that is no longer an option.
It's been a long journey from Sleep Study referral to 3 sleep studies, finding out I have central sleep apnea, and starting on an ASV machine. I haven't had and communication with the Sleep Specialist other than the first 20 min. face to face evaluation. I've asked a question or two and they've been answered by a staff member and very short answers. When I met with the med equipment specialist, he told me I was on a super specialized machine that only 1 in 3 people get, that my pressures were very high...about 1 step away from being on a ventilator, and that this machine was often referred to as the Death Machine. All of this was news to me! Has anyone else gone through a scenario like this?
I've had the machine for 10 days, pushed through 4 days all 4+ hrs/night. I'd wind up ripping the mask off when that awful squealing leak sound kept me awake. Took 4 days off due to frustration, then a dental emergency that wasn't compatible with wearing the head gear. I changed to a smaller mask (full mask) for 2 days and it just isn't working. Went back to med. size mask and the squealing started again if I don't stay in one position. Help! I really want this to work!!! Anyone have suggestions for masks that actually let you fall asleep? I don't mind that soft sound of a small leak, but can't sleep through the squealing. I'm trying to take this one step at a time, but anyone using ASV that has tips/suggestions, I'd sure like to hear them.
Here's to success!