Hello everyone. I'm new to this board. I'm also on another board, but wanted to get some more opinions if possible.
For 20+ years I have been struggling with chronic fatigue, fibromyalgia, insomnia, depression, anxiety, headaches, and more. I've been to numerous specialists and doctors over these years, with nothing ever found "wrong". This started when I was 18, a day after I got an MMR shot then got really sick. That illness turned out to be Mono, which incapacitated me for 6 months. I'm 41 now and my health has steadily gotten worse. My "treatment" has mainly been antidepressants and benzos for sleep. I take Pristiq 50mg, Wellbutrin 300mg, and Valium 10mg. I am probably going to do a slow taper (6 months) off the Valium because I have learned it affects sleep architecture and suppresses deep sleep.
So, where has led me? A year ago I had a sleep study done. It did not detect any sleep-disordered breathing at all, but I was snoring 2x a minute and had 19 "arousals" (changes in brainwaves) per hour. In addition, I spent 16% in N1 sleep, 78% in N2, 0% in N3, and 6% in R sleep. I would describe my sleep as very light, frequent awakenings to turn over, lots of dreaming, completely non-restful and non-restorative. I also have a hard time going to sleep at a normal time. My circadian rhythm is off and falling asleep at 3am or later isn't unusual for me. Talking with other people on Facebook about my sleep issues, one person suggested I may have UARS (Upper Airway Resistance Syndrome), which can be as debilitating as apnea. I read an article on it and it sounded like me to a "T". All these quirky little things common to people with UARS described me so perfectly. However, UARS is hard to detect on regular sleep studies and it's basically impossible to find a place that does the actual test for this. It's more confined to research places.
Then, I got referred to an ENT who is also board certified in sleep medicine. I brought up UARS and he said it's very possible I could have it and he gave me an RX for an APAP. I'm thinking, hallelujah, this might be the answer to my prayers! I went and bought a machine and accessories on [link removed] Supplier #1 in Supplier's List
(insurance wouldn't cover and my PCP was giving me and my ENT a hard time about it). I have a very minimalist mask that I like (DreamWear) and have only used it about 4 times, but it disturbed my sleep even worse! I think simply because I am such a light sleeper, this "thing" on my face kept disturbing my very sensitive brain. After each time I used it, even though I felt like I was asleep for my typical amount of time, I felt so much WORSE when I woke up as far as fatigue, with horrible bags under my eyes. One day I even woke up feeling dizzy and feelings of hyperventilation (I think I got too much oxygen possibly). Pressure has stayed low between 4 and 6. My machine has detected a couple regular apneas and up to 14 hypopneas and my mask has fit almost perfectly with almost no leakage.
I am contemplating these options:
1) Wear the CPAP during the day while awake at a fixed pressure (I'm home all the time and sit in my bed on my laptop) and maybe it will force me to breathe deeper, thus getting more oxygen in the long run, and maybe helping my mental energy to some degree (I am a shallow breather). This is just a theory and can't find any info to back up this theory.
2) Try wearing it at night again, but for a shorter period of time to start (say only 3 hours max) to try to get used to it and work up to the whole time. Although, I may be potentially wasting my time in the process while out a lot of money on this machine.
3) Sell everything.
Here's the data I obtained from my phone's app:
6/14: Used 7 hours, AHI 2.2, 4 Obstr. Apneas, 11 Hypopneas
6/19: Used 10 hours, AHI 1.5, 1 Obstr. Apnea, 14 Hypopneas
6/20: Used 9.5 hours, AHI 1.4, 2 Clear Apneas, 2 Obstr. Apneas, 9 Hypopneas (This is the day I woke up w/dizziness and hyperventilation symptoms)
I have my SleepyHead screenshots for 6/19 & 6/20 but I can't seem to post or attach them here
I lost the data for 6/14 because I had technical difficulties with SleepyHead and ended up formatting the SD card to start over.
Thank you for any advice you can give me!
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