Steve Hutchison (foomf) wrote,
Steve Hutchison


Just got my first mouthpiece. Not a lawyer, a device to keep me from suffocating when I sleep on my back.
See, in addition to the lovely neurological disorder "narcolepsy" I have recently learned that I have a variation on obstructive sleep apnea called "hypopnea with multiple frequent arousal" which is nowhere near as nice as it sounds.

What it basically means is this: As a narcoleptic, I don't sleep really well. My brain doesn't make enough of the necessary neurotransmitter "orexin" because my immune system went in and killed over half of the little cells in my hippocampus that make the stuff. This has all sorts of bad side effects.
One of them, for me, is excessive daytime sleepiness, and a weird form of insomnia where I simply don't "feel" sleepy at night even though I am so sleepy that I drop off instantly if I try.

Recently I've been so sleepy even with the meds I take that it was suggested I get a follow-on sleep study, so I did an overnight study where they discovered the hypopnea thing. My neurologist suggested I didn't really need a CPAP machine, but I could benefit from an oral appliance. He and my dentist recommended I go to the Sleep Medicine Network which has a really odd/strange/less-than-wonderful webpage.

It turns out that (partly due to the narcolepsy) when I sleep on my back, which is really the most comfortable position, my jaw and tongue relax, and slump down, and my airway closes to about the size of a coffee straw. It is profoundly hard to breathe when this happens and it was happening even when I was on my side (!) though not as bad. When this is happening, I'm so deeply in need of sleep where I can make the orexin, that (when recently measured) I went for about 3 1/2 minutes without breathing at all before the oxygen level in my blood dropped to about 80% (it's supposed to be above 90% and really, above 96%.) At that point my brain finally decided that it had better wake me up, so I had a nightmare of suffocating and gasped awake. I didn't remember that until the doctor showed me the readout from the little wrist-born test device. Anyway, this is a Bad Thing to have this happening even in the less-dramatic attacks. Waking up every three minutes to breathe? Not so restful, but that's what the averages said happened.

So a few weeks ago I found myself getting a mouthful of weird epoxy, then a second one, then a third. This was to make a positive frame from which they would build the device, which is two pieces like dentures, one that fits over the top of my upper teeth, the other over the bottom. On the top there is a sliding piece that moves forward or backward under the control of a small turnscrew (that I turn with a wrench that looks a lot like a thin paperclip) and on the bottom are a corresponding set of long "werewolf-tooth" shaped bits that prevent the bottom part from moving back past the upper part. Starting out in 'neutral" they would be in the normal bite position but they're adjusted forward by a couple millimeters, so my lower jaw starts out being forward of the upper, and over time I will adjust it forward. If there's no pain in the morning in the 30 minutes after I wake up and take it out, then I crank it forward another two twists (about a millimeter) for the next night; if I have a night where I don't snore, and sleep without trouble, then I can stop moving it forward.

Last night I did snore a bit, so not done yet. Still, woke up after 5 1/2 hours, but as I've been getting 4 1/2 hours sleep (out of 5 1/2 hours unconscious) that suggests that I did get more than the usual.

The device itself is shown on their site here

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