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HomePersonal, Posts, Stuff Addenda to “Invisible Illnesses”


Addenda to “Invisible Illnesses”

Erin

I reposted an entry I had on Dreamwidth about my invisible illnesses, and I realized that many people might not know about Sleep Apnea. Most of the other illnesses are pretty self-explanatory, but not that one.

Basically when I sleep, my throat relaxes. This isn’t a big deal since everyone’s does that, but in my case, it’s bad. It relaxes so much that the soft palate in the back of my throat collapses down and blocks my airway. I start choking.

What happens then is that my body sends a signal to my brain to wake me up and to get me breathing again. Not that big of a deal either, but in order to do that, I have to come from the beta, gamma or delta sleep I was in back up to the alpha state of sleep, so that I can tense the soft palate and start breathing.

All of this means that I choke myself all night long. It also means that I don’t get a full night’s sleep, since I keep waking up over and over and over again.

This is a condition that has been around for a REALLY long time. In other times it was called “Cheyne-Stokes“, but instead of suffocating due to brain injury, this is caused by the throat collapsing. It has been known to cause death in the past.

So the solution is to wear a CPAP machine. What this does is it creates a higher air pressure in my sinuses and mouth which holds the throat open at night, allowing me to breath normally. Here’s pictures:

The mask itself

The machine on my nightstand

What I look like at night in bed

The great part is that Mary gets to wear one of these too, almost identical to mine. We look like Borg and the vents on our masks blow on each other constantly. Really fun. Can’t talk, and they do take some time to get used to.

But, I do get a full night’s sleep now, unless the mask slips and I have to readjust it to seal it against my face. Or whatever. There’s a lot of times I wake up because the mask is bothering me. But I have managed to NOT pull the nearly $500 machine off my nightstand. I hope I continue this trend.

Is there another treatment I could have? Actually there is. It involves a minor surgery to inject an acid on the top of the soft palate to encourage scar tissue, and to pull it in and shrink the soft palate up. But it’s still experimental and I don’t think that I can get it done just because I wanna. Same with the diabetes, apparently injecting capsaicin into the liver will cure diabetes (the juice of a hot pepper that causes the tongue and mouth burn). But experimental treatments aren’t paid for by state insurance yet.

Anyhow, I thought I would post this to let you all know what this condition is. There was a link on the “invisible illness” post to the Sleep Apnea national group. Go and take a look to learn more.

Just thought I would share.

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9 Responses to “Addenda to “Invisible Illnesses””

  1. Barbara and I use Nasal Pillow masks. You can still talk using them. The airflow is still an issue, of course. They are easier to get used to as well. Less claustrophobia issues. Like this:

    Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear

  2. Mary says:

    One thing Daven really didn’t talk about was how depressing it is to be stared at and resented by people who don’t know you have a heart condition, or arthritis so bad that you’d rather cut the offending part off rather than live like this any more. To hear people mutter things like ‘fat slob, loose weight, nothing wrong with him/her” is soul destroying after a while.

    My two cents

    Mary

  3. Yes, you are correct. And then there’s the other side of the same coin: “what’s s/he doing using handicap parking? Looks fine to me.” I used to be judgmental like that. I learned my lesson when I developed fibromyalgia.

  4. Mary says:

    I understand. When I was still stupid enough to smoke with allergies and asthma, it was all I could do to walk ten feet without stopping. When I did park in handicapped space (with a temp card.) The looks and comments were painful and I so wanted to say, extremely rude things right back to make them feel like heels. It was very hard not to to put it mildly. Instead I wished them understanding through like experiences.

    I hope it worked. Should be a lot more compassionate people as a result.

    I certainly hope your fibromyalgia is better.

    Mary

    • I find that I am functioning much better since starting Cymbalta for fibro. Prior to that, for many years, I got to deal with the “can’t find anything wrong / must be in your head” reponse from so many doctors. That’s another really fun aspect of “invisible illness”. So many of them are so hard to diagnose accurately.

  5. Mary says:

    I am so glad to hear it. I am fighting that with Daven right now. The topper is he has scoliosis which of course throws everything off balance but doesn’t seem to count when it comes to back and hip pain. Kind of make me want to say WTF are you a doctor or a barber surgeon?

    Be safe and be well,

    Mary

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