Joined: Feb 2012
Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead
Other Comments: Have diabetes Type II
Location: Illinois, USA
Can you folks help me untangle this?
nila Wrote:I am so glad to have found your forum .
I have several health issues that interact with each other, and make it hard for me to figure out what to do. I'm hoping that if I lay it all out, some of you will have some suggestions. So, here goes .
1. Sleep apnea.
2. A problem with muscles, tendon, and ligament tissues. It seems to be genetic (my sister and grandmother also have it, and for each of us the onset was at age 18), but we have not been able to find a doctor who can pin a diagnosis on it. It may be a form of Ehlers-Danlos syndrome.
Anyway, what matters is that I injure these tissues easily and they heal slowly and incompletely. For example, if I fall I am more likely to sprain my ankle, and the sprain will take several years (rather than weeks) to get partially better, and will never heal completely. I will be on crutches or in a wheelchair for life.
This affects my sleep in two ways. Firstly, I have (by quick count) 37 such injuries. So finding a comfortable position is difficult, and many positions are impossible.
Secondly, I have to be careful not to sleep in a way that causes new injuries. You know how sometimes you wake up and, for example, your wrist hurts a little? You wiggle it around and say, "hmm.. I must have slept on it funny." And it gets better. Only, with me, it never gets better -- and then I can never lift a cup one-handed, or write normally, or whatever that injury prevents me from doing.
3. Something that seems to be mononucleosis. At least, I feel the way I did when I had mono some years ago, and blood tests show I am positive for all 3 viruses that can cause mono. But the tests are inconclusive as far as whether the viruses are currently active or not, and the results are the same when I am feeling extra-sick and when I am feeling a bit better, so it could be something else. My doctor is unsure, and wants to run more tests, but I am too sick to leave the house most months, so testing is difficult to arrange. This has been going on for two years.
I think the sleep apnea may be a key to all of this.
Before the mono started, I had been telling my docs for 15 years that I thought my problems with healing from injuries had something to do with not getting enough oxygen while sleeping. But I'd never heard of sleep apnea, and somehow they never thought to suggest testing for it. Maybe because I am skinny, and lived with a partner?
A year ago, though, I met a friend who has apnea, and, hearing his description, I realised that's what is going on with me. I start to fall asleep, or I sleep for a second or two, and then the back of my tongue relaxes against my throat and I can't breathe and I wake up. The lack of rest and oxygen could contribute both to my difficulties in healing from injuries, and in killing off the mono viruses (or other pathogen).
So I was all excited about this possible solution. Maybe I could get my life back! My health insurance doesn't cover a sleep study, and, being unable to work for two years due to the mono, I couldn't afford the $3,000 out of pocket. I asked my doc if I should just get a CPAP and try it. She said yes, so I found one on craigslist, got new masks, and, with help from your site and my apnea friend, set it up.
Uh-oh. Somehow, in all my reading and research, I hadn't grasped the idea that, with the CPAP, I would have to exhale _against_ the incoming air pressure. One of my more severe injuries is to the muscles around my diaphragm: There is no way I can breathe against pressure like that.
Ok, back to the drawing board. What else can one do for apnea? I looked at pictures of all the oral appliances I could find, but of course they depend on pressure or leverage against other parts of one's face or head, and I can't do that.
I think positioning could help me, if I could sleep on my side. But my injuries currently prevent that, probably for the next year or so. I waited a year for one injury to improve enough, but in the meantime I got another when my washing machine overflowed .
Drugs are also an issue. I take tiny amounts of muscle relaxants, most nights (I tend to be sensitive to drugs, so I take about 1/10 the normal dose). If I don't take enough, my muscle spasms keep me awake all night. But, of course, relaxing skeletal muscles leads to worse apnea. I do spend 10-15 minutes each night shaving tiny specks off the tiny fraction of a pill that i intend to take, titrating the exact amount I think I will need based on that night's pain level, so that I don't take any more than I have to. But there's a lot of guessing involved.
Even with drugs, it takes about 3 hours for me to find a comfortable position and fall asleep, though I am exhausted. Difficulty with hypothalymic functions like sleep are also a mono symptom; that's part of it, probably.
I've tried a few different drugs, looking for one that will help with muscle spasms without making my apnea too much worse. I'd welcome suggestions!
So, what do I do, here? What can I try next? I could see about going to a sleep doc, some month when the mono is less-bad enough that I can leave my house. But I'm impatient with waiting for that to happen, and I kind of get the impression from reading threads here that many of you folks are more familiar with the range of possible solutions, and more experienced with debugging difficult cases, than my small-town doc would be .
Thank you so much for reading this massive tome, and for any ideas you have about things I might try. I want to get some frickin' sleep!