Clenching neck and jaw all night, drowning sensations, face wrinkling, losing sense of taste

[sleepymamadc]

I was diagnosed with severe OSA in 2009 (35/hr). Have tried many dental devices but finally submitted to using CPAP nightly in Feb. 2019. The CPAP has reduced my AHI index to 4, but my sleep remains jumpy and fragmented. And the side effects are awful and I am seeking help.

Problem 1:
The muscles on the front of my neck (sternocleidomastoid) are enlarged because I clench them all night as I breathe. This is in tandem with clenching my jaw. I think it has to do with a mouth-breathing/tongue-thrust structural problem in my mouth and face. The neck clenching has gotten much worse over the last 16 months that I've used the CPAP. The muscle on the left is worse than the right. It's changing my appearance and is quite noticeable, I think, in addition to being painful.

I have a Philips Dreamstation, 7-12 pressure auto-pap. I recently switched to the Dreamwear mask from the Airfit F20 to see if that would help, but it didn't.

Problem 2
I still have terrifying, near-death (it feels) experiences of near-asphyxiation a few times a week in the night. You know the kind - wake up straight up in bed with a horrible burning/drowning sensation, heart beating super fast, gasping. If I'm on the CPAP, WHY does this still happen? I'll wake up tearing my mask off in terror, then slowly calm down and go back to sleep. Similar but different, I also get horrendous adrenaline jolts as I'm falling asleep (similar to hypnic jerks but much worse, disruptive and scary, and when repeated several times, lead to a night of insomnia)

Problem 3
My face has sagged and wrinkled a lot since I started the CPAP. I also turned 40 and have thin skin anyway, but I a sure the CPAP has drastically sped up the process.

Problem 4
My mouth and nose get extremely dry every night even though my humidifier is up to the highest setting. My sense of smell and taste have dramatically reduced since I started regular use of CPAP in Feb. 2019.

Any insight on one or more of these? I REALLY want to solve the neck clenching the most, but short of getting a palate expander device I don't know what to do.

Thank you!

[khauser]

Do you use OSCAR to view your information? If not, you really need to. I would not be surprised at all if you found that you suffered large leaks on a regular basis. Is the humidifier pretty much dry in the morning?

Take a look at the thread "Pugsy's Pointers...SleepyHead/OSCAR Tutorial and TX Hints" on the home page for more about gathering your data.

[sleepymamadc]

Good idea! I do not know how to do that, I downloaded the software but need to learn more about how to pull data from my machine. Will try to figure it out tonight.

There is usually a little water left in the reservoir in the mornings. Leaks awaken me frequently, and I'm going to try to get help from the supplier on fit/mask choice.

[LG34]

I've had similar issues with the front neck muscles. I was going for massage and the therapist helped with those muscles. A physical therapist had told me that those muscles were enlarged but at the time I may not have been diagnosed with sleep apnea. I've had a lot of issues and saw a specialist in TMJ/sleep apnea. She said a lot of my problems came from the sleep apnea not being diagnosed early enough. My dentist had suggested speech therapy for tongue thrust. I think the specialist might have suggested that also. Would nasal pillows be better than a mask for you?

[Janknitz]

I think your apnea is not well-treated. 4 is supposedly "therapeutic" but it's not optimal. Most of us who are getting good results from CPAP are well under 1.0 consistently. Seems like you need to do some tweaking to get there, and the data will help us see why your AHI's are still less than optimal and there may be some things you can try.

1. Your muscle clenching is an issue. Have you talked to your dentist about this? Maybe you need an oral appliance or bite guard to use in conjunction with your CPAP to place your jaw in a better position at night. I'm not talking necessarily about one to treat apnea (which my dentist told me can exacerbate TMJ issues), but one to reduce the strain on your muscles while you sleep.

2. I'll bet once you have data to see, you will find that those "near death" episodes may correlate to big apnic events. You may only be averaging 4 per hour, but they could be doozies! It will be interesting to see your charts when you can post them.

3. CPAP does not cause sagging and wrinkles. Aging does, poor diet and health do. How's your diet? Are you good at staying hydrated during the day? And even if CPAP did cause sagging and wrinkles (it doesn't), so what? I'm sure they do up faces beautifully in the mortuary, but I'd rather be alive with wrinkles. (I've been using CPAP a long time, I'm much older than you, very few wrinkles and sagging, and I have a collagen disorder to boot).

4. If you are mouth breathing, no setting on the humidifier is going to help the dry mouth issue. Mouth breathing is not only a function of being able to breathe through your nose, it's also effectively sealing off the mouth from the nasopharynx by tongue positioning. And that goes back to problem #1. Perhaps a dental appliance or bite guard will help when you can position your jaw correctly without strain so you can seal off the mouth from the air flow. Some speech therapists also specialize in helping people with these issues, if you can find one who really knows what they are doing.

I have pretty severe tongue thrust, too, but I have learned to position my tongue and relax my jaw so that I'm not straining all night and I can seal off the nasopharynx so I can use a nasal mask. This was something I had to learn to do (I practiced all day when I wasn't talking or eating), and not everyone can do it successfully.

Hopefully we can help you make this a more effective treatment.

[sleepymamadc]

Trying OSCAR for the first time. Did this work?

[sleepymamadc]

I've had similar issues with the front neck muscles. I was going for massage and the therapist helped with those muscles. A physical therapist had told me that those muscles were enlarged but at the time I may not have been diagnosed with sleep apnea. I've had a lot of issues and saw a specialist in TMJ/sleep apnea. She said a lot of my problems came from the sleep apnea not being diagnosed early enough. My dentist had suggested speech therapy for tongue thrust. I think the specialist might have suggested that also. Would nasal pillows be better than a mask for you?

Thanks for sharing, I'm glad to hear I'm not the only one! have been advised to do speech therapy in the past and just haven't felt like I had the time to put in. But I should do it. I tried nasal pillows but I panic and feel like I need to breathe through my mouth so haven't been able to sustain them.

[sleepymamadc]

I think your apnea is not well-treated. 4 is supposedly "therapeutic" but it's not optimal. Most of us who are getting good results from CPAP are well under 1.0 consistently. Seems like you need to do some tweaking to get there, and the data will help us see why your AHI's are still less than optimal and there may be some things you can try. Hmm, that's good to know. My sleep doctor said 5 was considered successful treatment.

1. Your muscle clenching is an issue. Have you talked to your dentist about this? Maybe you need an oral appliance or bite guard to use in conjunction with your CPAP to place your jaw in a better position at night. I'm not talking necessarily about one to treat apnea (which my dentist told me can exacerbate TMJ issues), but one to reduce the strain on your muscles while you sleep. I went to a TMJ sleep dr who said a certain type of device might help. It is thousands of dollars and I didn't get a good vibe from him so I haven't gone for it. I do have a regular night guard that keeps my teeth from grinding against each other, but it does nothing for the neck clenching. My brain seems to think my neck has to clench to pry open my throat to be able to breathe at night.

2. I'll bet once you have data to see, you will find that those "near death" episodes may correlate to big apnic events. You may only be averaging 4 per hour, but they could be doozies! It will be interesting to see your charts when you can post them. I would be so heartened to know they are related to something real!

3. CPAP does not cause sagging and wrinkles. Aging does, poor diet and health do. How's your diet? Are you good at staying hydrated during the day? And even if CPAP did cause sagging and wrinkles (it doesn't), so what? I'm sure they do up faces beautifully in the mortuary, but I'd rather be alive with wrinkles. (I've been using CPAP a long time, I'm much older than you, very few wrinkles and sagging, and I have a collagen disorder to boot). LOL. I hope you're right. I've been really freaking out that my CPAP has made me look older super fast and I'd rather feel like other factors are influencing it. I am constantly dehydrated and just have to get better at drinking water. My diet's pretty good, maybe a bit too many carbs and meat but an okay amount of veggies and little junk. I also have genetically agey skin (thanks Mom) so that's just a reality. I also got sunburned a fair amount when I was young (DUH!)

4. If you are mouth breathing, no setting on the humidifier is going to help the dry mouth issue. OH! Yes I mouth breathe, it's a huge problem. Mouth breathing is not only a function of being able to breathe through your nose, it's also effectively sealing off the mouth from the nasopharynx by tongue positioning. And that goes back to problem #1. Perhaps a dental appliance or bite guard will help when you can position your jaw correctly without strain so you can seal off the mouth from the air flow. Some speech therapists also specialize in helping people with these issues, if you can find one who really knows what they are doing. I will look into this.

I have pretty severe tongue thrust, too, but I have learned to position my tongue and relax my jaw so that I'm not straining all night and I can seal off the nasopharynx so I can use a nasal mask. This was something I had to learn to do (I practiced all day when I wasn't talking or eating), and not everyone can do it successfully. How did you learn to do it?? I'll try anything.

Hopefully we can help you make this a more effective treatment. Very grateful, thank you!!

[zonker]

Trying OSCAR for the first time. Did this work?

it worked as in it posted. you don't have to change what you've posted, but next time, what's needed is

Suggested Support Order for your charts
Event Flags
Flow Rate
Pressure
Leak Rate

also turn off the calendar as it's making it harder to see what's needed for the experts to advise.

not an expert myself, but if i were you, i'd set my minimum pressure at 9 and the maximum at 20.

oh and there is a way to set your charts from oscar but i'm not used to that yet. will go see if i can find that.

eta: found it. in oscar, hit the view tab, hit reset graphs and then standard.

good luck!

[Miss Emerita]

Next time you get one of those doozies, reach over and turn off the machine, then turn it back on. That way you'll be able to see in Oscar what was going on right before it -- there will be a little gap in the pressure graph to flag the spot.

I would second Zonker's suggestion of setting the minimum at 9 and the maximum at 20. Your machine needs to head more of your obstructive events off before they have a chance to happen. Don't worry about the 20; the machine won't go any higher than it needs to, but there were times on each chart when it would have gone above 12 if it could have.

I have zero insight into your muscle/jaw problem, but I'm curious. Is it the kind of thing that might be helped by using a soft cervical collar to rest your lower jaw on so it can relax? That might have the double advantage of helping you reduce mouth breathing.

[booksfan]

You've gotten some good suggestions.

Regarding problem 2. You mention a BURNING sensation. My immediate thought was acid reflux. I used to have problems with that and your description of "wake up straight up in bed with a horrible burning/drowning sensation, heart beating super fast, gasping" is almost exactly how I would wake up from an acid reflux episode. Could that possibly be an issue for you?

As far as problem 3, a lot of masks have straps across the face. Especially for someone with thin/delicate/sensitive skin, perhaps the pulling and dragging of straps on the skin of the face could have a deleterious effect? Among other negative effects of traditional masks, I developed strap acne (admittedly a different issue, but still a skin facial issue related to straps). All my issues were pretty much resolved once I switched to the Bleep. And I was really surprised at how much air actually flows through the ports. I did see you said you had not been able to sustain nasal pillows. If you ever decide to try pillows again and get a chance to try the Bleep with mask insurance or 30-day trial, maybe it would work for you as well.

[Janknitz]

Booksfan, you've made a great point about the reflux!

That's exactly what that sounds like. It can be related to apnea, in that during the struggle to breathe it creates a pressure gradient that sort of vacuums stomach contents up into the airway. So if you are still having these issues after we get your treatment dialed in then you should explore the GI issue. It's very common with people with OSA.

[lrob123]

The muscles on the front of my neck (sternocleidomastoid) are enlarged because I clench them all night as I breathe. This is in tandem with clenching my jaw. I think it has to do with a mouth-breathing/tongue-thrust structural problem in my mouth and face. The neck clenching has gotten much worse over the last 16 months that I've used the CPAP. The muscle on the left is worse than the right. It's changing my appearance and is quite noticeable, I think, in addition to being painful.

Because you are often clenching these muscles, they probably have some trigger points that make the problem worse (which make the muscles contract automatically). Do you ever self-massage these trigger points to minimize them?

Here are some resources:

https://wizardofhealth.net/muscle-pain/ ... s-in-neck/

http://myofascialtherapy.massagetherapy ... mon-causes

I have good success with treating my back pain by pressing on certain trigger points in muscles in my abdomen which seem to be activated whenever my lower back hurts. I use my knuckles or finger tips to press on the trigger points.

[sleepymamadc]

I'm back from a vacation, thank you everyone for your good ideas. I changed the settings right away to 9-20 and have had almost ZERO drowning-sensation events since then. Woohoo! Here's last night. My AHI numbers are a little bit better than before I switched settings, but not much...

Screen Shot 2020-07-10 at 7.07.17 PM.png (283.71 KiB) Viewed 12592 times

I will look into the trigger points for sure. Thank you for that!

I'll also check out the Bleep when I get my mouth breathing under control.

[zonker]

I'm back from a vacation, thank you everyone for your good ideas. I changed the settings right away to 9-20 and have had almost ZERO drowning-sensation events since then.

congrats-sparkle.gif

and now you can work on the rest. your chart still needs some re-arrangement and if you could turn off the calendar, that would make it easier to see your graohs.

but good work on at least getting rid of the drowning sensation part!