Headgear causing migraine - Would like recommendations, please

Hi everyone - first time poster, long time APAP user. I have a long, long history of occipital and trigeminal neuralgia migraines. That means I've got two nerves that come out the base of the skull, and around the top of the spine. The occipital nerve goes up the back of the head, generally speaking, and the trigeminal goes up the back of the ear and towards the front of the head. Here is why that is important:

1) When I did the sleep study, the sleep tech cranked the mask down like I was in an East German prison. I got a bad, bad migraine in about a half hour and didn't really sleep through the study as a result;

2) When I wore the mask according as fit by the sleep doc, I would get a migraine within the hour, guaranteed. My neurologist said APAP therapy usually has a positive effect on migraines, not a profoundly negative effect. Well, we figured out it was the straps from the F20 headgear irritating the two nerves at the base of the skull;

At this point, I leave the lower straps loose (the ones that irritate those nerves), sleep with my face largely pointed towards the mattress to press the mask into my face, tolerate the high leakage numbers, enjoy good sleep (mostly), suffer very few migraines, and have AHI numbers less than 1 on most nights.

Well, I get about four hours of sleep before I get really sore from not moving around and wake up. I'm hoping there is a better way, which is why I am here.

I'm an occasional mouth breather, so my sleep doc said nasal pillows probably aren't going to work well.

Is there a headgear setup that doesn't have straps that go under the base of the skull? Something with a full face mask? My sleep doc is really stuck on ResMed and tells me to talk to my Neuro about, essentially, taking more drugs and just cranking down the straps. I'd like to see if there is an alternative to taking a bunch of drugs.

btw, I searched the forum before I posted, read 38 articles that related to migraines caused by headgear Many were ten years or more old. I thought I'd get an updated perspective.

Thanks so much for your thoughts!

EricTheRead wrote: ↑

Sat Nov 09, 2019 5:28 pm

Hi everyone - first time poster, long time APAP user. I have a long, long history of occipital and trigeminal neuralgia migraines.

welcome to the zoo! sorry you are having such a terrible time. kind of hard to stick to therapy when the therapy is partially to blame for causing pain.

i don't have experience with full face masks. but i'm wondering if you could look to our host site for some ideas?

to keep the bots happy, that's www.cpap.com.

all kinds of masks there. it will at least give you something to do before forum members start making suggestions.

good luck!

You say you are an OCCASIONAL mouth breather. Could you consider using a Bleep DreamPort? No straps whatsoever. If the mouth breathing causes too much of a problem, perhaps you could try taping or a chin strap?

Back straps were a real problem for me and the Bleep has been so much better. I do occasionally mouth breath, which is what gives me leaks with the Bleep. They are generally at a fairly low level. Sometimes I will get a leak spike. But not an issue. On the rare nights that my mouth stays shut, I have zero leaks.

It might be worth checking into, especially if your DME will let you try it.

booksfan wrote: ↑

Sat Nov 09, 2019 7:21 pm

You say you are an OCCASIONAL mouth breather. Could you consider using a Bleep DreamPort? No straps whatsoever. If the mouth breathing causes too much of a problem, perhaps you could try taping or a chin strap?

Back straps were a real problem for me and the Bleep has been so much better. I do occasionally mouth breath, which is what gives me leaks with the Bleep. They are generally at a fairly low level. Sometimes I will get a leak spike. But not an issue. On the rare nights that my mouth stays shut, I have zero leaks.

It might be worth checking into, especially if your DME will let you try it.

Thanks for your quick reply. I've seen the nasal hoses. I tried nose-only things once. What happens is the pressure goes from the nose, to the trachea, to the lungs, oh - and inflates my mouth and causes my mouth to pop open. When I have nothing on, I occasionally am a mouth breather. That means, I inhale through my nose and occasionally exhale through my mouth. When I had those nose tubes on, with positive pressure, my mouth popped open. I didn't keep my mouth shut when pressurized (my cheeks were puffed out). More detail makes all the difference I suppose. Sorry about that.

My Doc said given when I do, he feared I would just open my mouth and the pressure would go in the nose, around the back of my throat, and out my open mouth if I didn't have a full face mask.

I do appreciate your suggestion nonetheless.

A few random ideas with the F20. There is an anti-leak strap available from pad-a-cheek. This has worked well for me in terms of reducing leaks; I think a few folks here have tried using the AmaraView strap with the F20.

There are some tricks you can learn to help prevent air escaping the mouth.
1. Master the technique of keeping your tongue suction sealed to the roof of your mouth. Practice it all the time until it becomes second nature.
2. Make gravity work for you instead of against you.
A Side sleeping on a firm flat pillow will help prevent jaw drop.
B. Sleep with the front of the face slightly off the edge of the pillow enough that the edge collapses a bit tilting your face toward the mattress. This will help the tongue fall forward, helping maintain the seal. Seems logical that the more you keep the airway open for the air to go down, the less need
there is to push out the mouth.

If your efforts allow you to use a minimilistic mask, the Dreamport Bleep, as has been mentioned, would make you headgear free. Same for the TapPap, which stays in position with a mouthpiece - as long as pressure on the teeth won't trigger your trigeminal neuralgia. Saw a friend's P10 recently and was surprised how minimal the headgear is. I like no headgear masks because of neck problems. After seeing my mother suffer with trigeminal neuralgia, I think any efforts toward avoiding triggers are the way to go.

kteague wrote: ↑

Sun Nov 10, 2019 7:14 am

There are some tricks you can learn to help prevent air escaping the mouth.
...
I think any efforts toward avoiding triggers are the way to go.

These are great ideas. Thanks for taking the time to share them. I appreciate it.

TropicalDiver wrote: ↑

Sun Nov 10, 2019 12:19 am

A few random ideas with the F20. There is an anti-leak strap available from pad-a-cheek. This has worked well for me in terms of reducing leaks; I think a few folks here have tried using the AmaraView strap with the F20.

I'll go look at these products. Thanks for the suggestions.

EricTheRead wrote: ↑

Sun Nov 10, 2019 9:51 pm

TropicalDiver wrote: ↑

Sun Nov 10, 2019 12:19 am

A few random ideas with the F20. There is an anti-leak strap available from pad-a-cheek. This has worked well for me in terms of reducing leaks; I think a few folks here have tried using the AmaraView strap with the F20.

I'll go look at these products. Thanks for the suggestions.

The real question is will the straps avoid your migraine inducing places. I would also observe that my straps are snug but not super cranked.

Interestingly enough I tried a number of tension settings on my straps. Many times I found I had rolled over, pressing the mask on the pillow, putting more tension on one side of the headgear than the other. Sometimes that was enough to rub me the wrong way, literally, sometimes not.

I think what I need is a fish bowl helmet, like space men wore in 1950's sci fi movies, instead of a mask.

I wonder if ResMed makes the H 30 whole head helmet, your full mask upgrade. It would have a two part clamshell construction with a generous padding seal around the neck. Maybe something cool with lights like they wore in space odyssey 2001. My wife would grow tired of me asking HAL to open the pod bay doors. I can dream can't I?

I’m currently also experiencing these issues and need full face mask but due to where the headgear touches base of skull, (and I need it tight due to high pressure), it ignites my occipital neuralgia pain. Sleep is then impossible. Any suggestions greatly appreciated.

Waggashell wrote: ↑

Fri Oct 14, 2022 6:56 am

I’m currently also experiencing these issues and need full face mask but due to where the headgear touches base of skull, (and I need it tight due to high pressure), it ignites my occipital neuralgia pain. Sleep is then impossible. Any suggestions greatly appreciated.

Have you considered the Bleep? No headgear at all. The DreamPorts are the first version. New version, the Eclipse, hopefully comes out in the next few weeks.

A soft pad of something, foam or folded fabric, etc. just underneath the back strap?

What happens is the pressure goes from the nose, to the trachea, to the lungs, oh - and inflates my mouth and causes my mouth to pop open.

Ever open your mouth under water when swimming, or try to talk under water when you were a kid for fun? You don't drown because you can seal off the back of the throat so the water doesn't go into your trachea and lungs. Air works the same way--you can seal off your mouth from the airway so that you can open your mouth with CPAP on and no pressurized air will escape. That's what Kteague was suggesting. Here's how:

First, put your tongue on the roof of your mouth, on that ridge behind your front teeth. Open your mouth with your tongue in that position. Now plug your nose and try to breathe in. If you can't get air in or out, you CAN seal off the airway from the mouth, and that will solve the mouth inflation problem, whether your mouth is open or not. Some people (especially if they have had any sleep apnea type of surgery) cannot seal that off, but most of us can.

Now the trick is to learn to sleep with your tongue in that position. I have found that by practicing all the time while awake it will carry over to nighttime after a few days. You put the tongue in that spot all day except when eating, drinking, or speaking--consciously at first until it becomes second nature. Jaw should be relaxed, don't clench your teeth. After a few days of practice you should be able to keep your tongue right there.

I will admit sometimes the seal breaks and I do get a bit of air in my mouth--I just open my lips and let it out. No big deal. If the tongue is in the right place you won't lose any pressure doing this.

You may be occasionally mouth breathing because of "air hunger" and once you get your therapy dialed in, that should stop. So it's worth giving something like the Bleep a try, as it won't put any pressure on sensitive nerves, and you may want to look into a hose management system for even more comfort.

BTW, the tech that cranked down on that mask is an IDIOT who doesn't understand how air cushions work. They have to have a loose enough fit for the air cushion to fully inflate--that's how the seal works. And did your doctor adjust the FF mask for you in the position you normally sleep in, or were you sitting upright in the office? Your face musculature is very different when you are sitting up vs. lying down. Full face masks are VERY hard to avoid leaks because there's so much surface area that has to stay in contact with the cushion, and faces are dynamic so unless there's some play in the air cushion it can't adapt to changes in your face (as you sleep you relax) and changes in position. With your constellation of issues, a FF mask is really a poor choice in the first place, but the tech doesn't even understand basics.

Try to distinguish between "mouth breathing" and "mouth leaking".
If normally you only need to "mouth breathe" when you have a bad cold, then what you are is a mouth leaker.

Janknitz wrote: ↑

Fri Oct 14, 2022 12:01 pm

ow the trick is to learn to sleep with your tongue in that position. I have found that by practicing all the time while awake it will carry over to nighttime after a few days. You put the tongue in that spot all day except when eating, drinking, or speaking--consciously at first until it becomes second nature. Jaw should be relaxed, don't clench your teeth. After a few days of practice you should be able to keep your tongue right there.

I will admit sometimes the seal breaks and I do get a bit of air in my mouth--I just open my lips and let it out. No big deal. If the tongue is in the right place you won't lose any pressure doing this.

If all you are is a "mouth leaker" Jan's advice is excellent, and worth trying.
Some of us can't manage it. My body is convinced that part of sleep relaxation is relaxing that back of the mouth seal as well - and even at relatively low pressures, I get terrible leaks that dry my mouth out and literally cause my tongue to "cleave the back my throat" - a very unpleasant experience, and very painful when you try to move your stuck tongue.

The only solution for some of us is taping our mouth shut. Back when I started CPAP, in 2005, I thought this was the maddest, craziest idea ever - and it terrified me.
Back then, taping was suggested by people whom I had come to know on the forum, and whose opinion I trusted (no videos back then). My solution to my terror was a decision to try to tape my mouth while wide awake, looking at the mirror - firmly knowing that this was only a test of taping, not a decision to tape at night. And it was then I discovered that the only reason for my horror was the deep-seated experience of nightly choking with untreated apnea that made me so terrified. I moved about the house with taped lips - no problem at all.

And, if anyone in your vicinity starts blabbering about how dangerous taping is, point them at this oracle oral mask with nose plugs OKed for use by the FDA and ask them to explain what makes this any different.
Let us know when you find a convincing reply about the difference in so called danger between "mouth taping" and "nose plugging"

Here's the best video I know about mouth taping, I'm linking to where "The Lanky Lefty" starts talking specifically about mouth taping - I highly recommend his channel

https://youtu.be/HgSdfsGe7zk

There are softer tapes than the one he suggests - more expensive but you may consider them worthwhile. For me with my lips properly pressed in, a 1" height of tape is enough. Also: I make sure to fold in a tab and not a corner to make taking the tape off easier.

Softer tapes:

• Medvance Soft Silicone Tape with Perforation for Easy Cut Size (I've been using this one, it cheaper when you buy it in multiple packs)

• 3M Kind Removal Silicone Tape - no personal experience with this one

Let me add that I believe the training suggested by Jan and other has helped me reduce the number of times and the length of my mouth leaks - there were times in the past when my cheeks would blow up so bad with leaked pressure that I had to resort to full face (actually hybrid) masks. That is no longer true.

I use the Bleep, no headgear, and tape.