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Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 4:51 am
by adesetisland
Hi all - has anyone here have issues where even with pressure at 20, it still doesn’t overcome the tongue from blocking their airway? I have large tonsils as well. Would the ASV help overcome this?

I have tried sleeping on my side, prone position, and even sitting up. Every time I feel I’m about to fall asleep, I get jerked awake due to my airway being blocked. I don’t think it helps that I breathe with my mouth open while sleeping. I tried sticking my tongue out but my teeth made it hurt.

I just got the Dreamwear FFM (used with cervical collar in hopes of keeping my mouth closed and tongue on roof) and was able to get about 3 hours of sleep with it, but i think that was more from pure exhaustion. I woke up with a headache and heart racing, I probably snored too. I couldn’t get back to sleep due to the sleep onset issue and I spent the rest of the night increasing the minimum pressure to overcome it, but haven’t found anything that’ll work.

As soon as I’m able to, I’ll post the oscar report from last night.

I requested a sleep study and am waiting for insurance and all that jazz to get moving. In the mean time I don't know what I’m going to do. My sleeping schedule this past week has been sleep for a few hours, next night i’m up with hardly any sleep due to body jerking me awake, then the next night for only another few hours. This is so depressing and I’m so scared of the consequences from this. Waking up with my heart racing makes me afraid to fall asleep again. Any suggestions on how to deal? I suspect I may have had SA most of my life, but it wasn’t until recently did it really rear its ugly head.

Lab results from my appt on Thursday showed that I was dehydrated and low in vitamin D. I’m working on getting my fluids in and supplementing the vitamin D. I also have hypothyroid and it showed within range so that’s good. NP also checked heart and she said it was good (did EKG). I also requested a referral to an ENT to check out these large tonsils (i’m really hoping not to do any surgery).

Edit: After posting the above, I was able to get back to sleep and catch a couple of hours (without cervical collar). The aerophagia was real this morning :?. I've tried EPR but didn't really like it.

This is last night's report using the Dreamwear FFM (I was previously using a Quattro FX). I think I slept on my right side most of the time. I started with min at 15. Then when I woke up from that first sleep session (with headache and heart racing), I raised the min due to not being able to fall asleep from being jerked awake. I got up a couple of times to get my mind off it, which was when I posted the above.

Looking at the graphs, maybe the mask is helping? It's certainly much better than the night before when I used the Quattro FX and didn't sleep at all.
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09-20-2019.png (242.98 KiB) Viewed 1497 times

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 5:45 am
by ChicagoGranny
adesetisland wrote:
Sat Sep 21, 2019 4:51 am
I also requested a referral to an ENT to check out these large tonsils (i’m really hoping not to do any surgery).
Oh gosh, don't hope for that. The best thing that could happen would be a tonsillectomy curing your sleep apnea.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 5:47 am
by palerider
Waiting on pics, asv won't help with obstructives, that's not what it does, vauto might help, though. It goes to 25.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 5:48 am
by palerider
ChicagoGranny wrote:
Sat Sep 21, 2019 5:45 am
adesetisland wrote:
Sat Sep 21, 2019 4:51 am
I also requested a referral to an ENT to check out these large tonsils (i’m really hoping not to do any surgery).
Oh gosh, don't hope for that. The best thing that could happen would be a tonsillectomy curing your sleep apnea.
But, it won't, could help though.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 5:49 am
by ChicagoGranny
adesetisland wrote:
Sat Sep 21, 2019 4:51 am
Large tongue
By what technique are you measuring your tongue? Against what standard? Do you have scalloping on the sides of your tongue?

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 8:22 am
by adesetisland
ChicagoGranny wrote:
Sat Sep 21, 2019 5:49 am
adesetisland wrote:
Sat Sep 21, 2019 4:51 am
Large tongue
By what technique are you measuring your tongue? Against what standard? Do you have scalloping on the sides of your tongue?
Based on the Mallampati score, i think I'm 3.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 10:06 am
by D.H.
To the OP:

Your AHI is 0.44 (for the night shown)! This is considered very good if not excellent! You slept for 6¾ hours, which is good (you should do seven, but you're pretty close).

Also, your pressure did not seem to go above 19, so having a machine capacity above 20 won't make a difference.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sat Sep 21, 2019 4:22 pm
by adesetisland
D.H. wrote:
Sat Sep 21, 2019 10:06 am
To the OP:

Your AHI is 0.44 (for the night shown)! This is considered very good if not excellent! You slept for 6¾ hours, which is good (you should do seven, but you're pretty close).

Also, your pressure did not seem to go above 19, so having a machine capacity above 20 won't make a difference.

Seeing that number is encouraging.

For that first session where I slept for 3+ hours, I wonder why I woke up with a headache and my pulse racing. The last session, I didn’t. I’m grateful I was able to get more sleep after the first session once I raised the min.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 3:03 am
by kteague
If your tongue is indeed a problem, I would avoid back sleeping even though you didn't feel lying prone or on your side made a difference. Even when side sleeping, if your face is slightly off the edge of the pillow enough that the front of your face tilts a bit downward, gravity can work for you instead of against you. When I first started CPAP my tongue was enlarged. Edges had teeth impressions. Sleeping on my back was miserable. At some point my tongue returned to a normal size. I can now back sleep as long as my tongue is suctioned firmly to the roof of my mouth. Don't give up on your situation someday being better. Till then, keep in mind to let gravity work for you.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 4:01 am
by adesetisland
kteague wrote:
Sun Sep 22, 2019 3:03 am
If your tongue is indeed a problem, I would avoid back sleeping even though you didn't feel lying prone or on your side made a difference. Even when side sleeping, if your face is slightly off the edge of the pillow enough that the front of your face tilts a bit downward, gravity can work for you instead of against you. When I first started CPAP my tongue was enlarged. Edges had teeth impressions. Sleeping on my back was miserable. At some point my tongue returned to a normal size. I can now back sleep as long as my tongue is suctioned firmly to the roof of my mouth. Don't give up on your situation someday being better. Till then, keep in mind to let gravity work for you.
Thank you for the encouragement. I’ve seen your other posts about your experience and will be try to follow your tips. I’m having a sleepless night again as the jerking is so bothersome. I don’t want to raise the pressure any more than it is as it gets uncomfortable.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 10:08 am
by D.H.
I fail to see a problem, at least according to numbers posted.

Am I to understand, that even though the numbers are good, you still feel lousy?

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 10:24 am
by jimbud
D.H. wrote:
Sun Sep 22, 2019 10:08 am
I fail to see a problem, at least according to numbers posted.

Am I to understand, that even though the numbers are good, you still feel lousy?

Try reading this. Large tongue is causing a problem. I’m so sleep deprived.
Post by adesetisland » Sat Sep 21, 2019 5:51 am


Does that help?

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 10:27 am
by D.H.
jimbud wrote:
Sun Sep 22, 2019 10:24 am
D.H. wrote:
Sun Sep 22, 2019 10:08 am
I fail to see a problem, at least according to numbers posted.

Am I to understand, that even though the numbers are good, you still feel lousy?

Try reading this. Large tongue is causing a problem. I’m so sleep deprived.
Post by adesetisland » Sat Sep 21, 2019 5:51 am


Does that help?
According to the stats, this person is sleeping almost enough hours. While (s)he's slightly under seven hours, it's not a severe shortfall.

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 10:33 am
by jimbud
D.H. wrote:
Sun Sep 22, 2019 10:27 am
jimbud wrote:
Sun Sep 22, 2019 10:24 am
D.H. wrote:
Sun Sep 22, 2019 10:08 am
I fail to see a problem, at least according to numbers posted.

Am I to understand, that even though the numbers are good, you still feel lousy?

Try reading this. Large tongue is causing a problem. I’m so sleep deprived.
Post by adesetisland » Sat Sep 21, 2019 5:51 am


Does that help?
According to the stats, this person is sleeping almost enough hours. While (s)he's slightly under seven hours, it's not a severe shortfall.
Just because you have a mask on and a machine running does not mean you are sleeping well.

Does that help?

Re: Large tongue is causing a problem. I’m so sleep deprived.

Posted: Sun Sep 22, 2019 11:21 am
by Miss Emerita
D.H., OP writes, “Every time I feel I’m about to fall asleep, I get jerked awake due to my airway being blocked.”