Well I tried seroquel the past two nights, and it helped some, but still shallow sleep, frequent wake ups. I am probably going to try ambien tonight, because that is what the doctor gave me. In the meantime I may order some cyproheptadine, maybe it will be helpful when my situation is a little less severe. Right now I’m wondering if even the ambien will actually knock me out based on my track record with the pharmaceuticals I’ve tried.
My mom slept next to me last night and reports that as soon as I fall asleep my breath becomes very labored. I can’t get a consult for a sleep study for another month, and then I don’t know how long it will take to get the actual study after that consult, much less whatever intervention is needed to address the situation. I am wondering if just going ahead and getting a cpap machine is a good idea? Can I assume that’s an appropriate application given that I know my breath is stopping and waking me up? Or do I need to know more via a study?
I am in a relatively supportive situation, I have just become so incredibly sensitive to the subtle emotional current of things being in such an acutely vulnerable state for so long, it doesn’t take a lot to trigger me. It is safe and benevolent, but not actively loving. I feel like a little baby that needs to be held constantly, and I don’t have anyone that can do that. I would live with my mom, which would provide more active love and care than I am getting in this environment with friends, but she lives right next to a cell tower, and I just can’t do it. Other family have similarly toxic environments too, this is the best option currently. I hope for better and better and more and more loved as time goes on.
A study would be useful to know if you're dealing with apneas, RERAs, or both but there are steps you can take now to improve your situation. First off, start taping your mouth when you go to bed. You need to make sure you are only nasal breathing at night. I would also try nose dilator cones or Breathe Right strips to minimize any sort of nasal resistance. Inclined bed therapy is also an option... it seems to help some people. Sleeping position (and even more critically, neck position) is usually a big factor in respiratory arousals. It's up to you to experiment here. Stomach / side sleeping are your main options, supine position is usually worst for breathing. Try to keep your neck extended, if you tuck in your chin while you sleep that will almost certainly compress your airway. Also, if you are able to, sleeping in a sitting position would probably help a lot, but I imagine it will be difficult to accomplish in your situation. I tried several times and wasn't able to.
You can also experiment with off-the-shelf MADs (mandibular advancement devices). They move your lower jaw forward and keep it locked there throughout the night to open up your airway. There are dentists who know how to custom-make MADs to your specific jaw, but they are awfully expensive. You'll have to try some appliances from Amazon and see if they give you any benefit.
With regard to CPAP, I doubt it would be helpful in your current situation. I tried one myself but my anxiety went through the roof and sleep quality plummeted even further. It's like trying to sleep with a vacuum cleaner blowing in your nose. Compliance for CPAP is quite low for a reason. If you've tried the non-PAP options I mention above and want to give it a go, I would recommend investing in a BiPAP (used, no reason to buy new), which modules air pressure when you inhale and exhale. It's much less anxiety-provoking and works quite well for people with UARS. Just remember that all PAP (Positive Air Pressure) devices need a lot of trial-and-error with the settings, different masks, etc. It's not exactly a silver bullet in most cases.
And yeah, that "acutely vulnerable state" and powerlessness you speak of mirrors my UARS story so closely. It tests your will to live at the very core... But brighter days are ahead, I guarantee it!