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Crenated/scalloped tongue all day long - do any of you get this?

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singingkeys +0 points · 2 months ago Original Poster Sleep Commentator

A particular issue is my tongue. I get a deeply scalloped/crenated tongue with teeth marks all the way around. This is quite devastating and has been since I was a kid. These HURT so bad some days and make little pieces of the tongue stick off the side and/or cause canker sores that last for days because certain teeth marks are so deep. As you can see, it is all the way around both sides, the front and also the top edges of the tongue and extending back a considerable amount on top of the tongue. Seems like a medical condition. GP doc didn't know. Sleep doc said it is a classic sign of sleep apnea, but sometimes my marks stay deep and last all day and into the night before it is time for bed again. That makes me wonder if a night mouth guard would solve the problem completely. Some days the tongue is swollen and looks larger with these teeth marks. Other days it looks smaller and has no marks at all. I'm confused. Everyone else is confused. ENT doc seemed confused about it, as well. Logic tells me that if my tongue is enlarged or I'm thrusting at night to keep the tongue from blocking my throat, pushing it forward and therefore causing teeth marks would be expected. But I'm not sleeping all day. They should go away when I'm up during the day and they don't. Is this a medical problem other than sleep apnea-related stuff? My lips are also exceptionally red and my face is a bit flush red on days when I don't sleep very well, but blood pressure is normal on those days. Other days I look fine.

https://ibb.co/s2WfwZQ

https://ibb.co/k6p2ct6

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https://ibb.co/4scmZG2

Previous in-lab study before with 4.7 AHI and 50 breathing events. Snoring was detected. Got 2.75 hours of sleep. No sleep apnea was mentioned because it was just below the threshold. Recently had a home sleep study that I requested myself via mail-order that showed 5.3 AHI, detected snoring and some pretty long apnea events (one was about 80+ seconds) and heart rate dropped down to 49 beats per minute at a low point during the night. Couldn't get the sleep doc to give me a prescription to try APAP. I went to my ENT doc Friday and I'll get a call from their supplier in a week or two and they're going to work with me to get an APAP. So going to try for the ResMed AIr Sense 10 Auto and P10 nasal mask.

Curiously, the ENT doc said that some people have a 10 AHI and don't feel too much in regards to being tired. Others can have a 5 and theirs hits much harder to the point where they're virtually falling on their face tired all of the time. She did not recommend surgery for other stuff, said it hurts a lot and is dangerous. She previously did my turbinate reduction and deviated septum surgery, so it definitely isn't my nose/sinuses. We have the CT and MRI scans showing my sinus/throat and such. Must be either the adenoids, throat or the tongue causing my apneas. She said if the CPAP works, then keep at it and stay with that and don't bother with surgery. If it doesn't work, then she said we'll start looking at neurology-related stuff. What's she talking about with that?

I should also note that it feels like I wake up 5 or 10 times every 10 minutes sometimes, and that's when I'm laying on my stomach with my head to the side. Usually the worst apneas are supposed to happen on the back. My tongue usually feels incredibly swollen during this time and may be the culprit.

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