My trigeminal neuralgia started to flare up around November, and is still with me. I have MS, and I've had TN before "for a season" and then it would fade. This bout seems to be hanging on and is a nemesis to the masks I've tried.
I use a Respironics BiPap and I've used the Wisp mask for years. I'd try others, but always go back to the Wisp. But the headgear seems to trigger the TN, so I've been trying other masks. The one I've found that doesn't set off the neuralgia is a Resmed Swift Bella...the one with ear straps. Why it doesn't set it off, I'm not sure, but it doesn't. My problem is, I go to bed with it and it's working perfectly, great seal, and I fall asleep easily. But about 3 hours into the night, I wake up to a horrific leak, and that's where the problem comes in. I can't get it back to the sealed position. I don't know why. My biped pressure is 20/12. I sleep on my back the whole night, and move very little, but my head does tend to flop to one side.
I surmised that perhaps I put pressure on the hose when my head moves and that pulled the pillows out of place, but I have no answer as to why I can't regain the original seal. Anybody have an idea why I start to leak 3 hours into the night. I've tried all three sizes of nasal pillows they send (the medium works the best.)
Any guidance would be appreciated...or any mask that someone's found that works with TN. I saw the mask with no headgear, and that looked interesting, but I have atrophy on
one side of my face, jaw, tongue, neck...and I don't know if I could hold something in my mouth all night, I think my muscles would just give up and let it go.
Trigeminal Neuralgia and mask type
Re: Trigeminal Neuralgia and mask type
Are you having the readjust the tension on the Bella straps the next night?
The straps shouldn't change with minor movement but maybe they are????
Otherwise I have no idea why it would become so difficult to get the pillows to seal up again after 3 hours when it would work at the beginning of the night.
What about trying the Padacheek Bella strap covers?
I can't think of any mask that wouldn't have strap placement that might aggravate the Neuralgia.
That nasal pillow mask that uses the mouth guard...the Tap Pap...the mouth guard fits over the teeth so your muscles would have nothing to do with it. It's anchored by the fitting over the upper teeth. I have used that mask in the past and if a person can get use to having something in their mouth it's a pretty sweet little mask.
The mouth guard they use is really thin and lightweight. At cpap.com that mask comes with the free 30 day return insurance.
Unless you have some loose teeth or loose crowns...might be worth looking at. I used it for over a year and just loved it. Had some initial tooth discomfort which was very minor that went away fairly quickly. Often I would wake up and lay in bed and never even notice or feel like I had anything in my mouth or nose at all.
The straps shouldn't change with minor movement but maybe they are????
Otherwise I have no idea why it would become so difficult to get the pillows to seal up again after 3 hours when it would work at the beginning of the night.
What about trying the Padacheek Bella strap covers?
I can't think of any mask that wouldn't have strap placement that might aggravate the Neuralgia.
That nasal pillow mask that uses the mouth guard...the Tap Pap...the mouth guard fits over the teeth so your muscles would have nothing to do with it. It's anchored by the fitting over the upper teeth. I have used that mask in the past and if a person can get use to having something in their mouth it's a pretty sweet little mask.
The mouth guard they use is really thin and lightweight. At cpap.com that mask comes with the free 30 day return insurance.
Unless you have some loose teeth or loose crowns...might be worth looking at. I used it for over a year and just loved it. Had some initial tooth discomfort which was very minor that went away fairly quickly. Often I would wake up and lay in bed and never even notice or feel like I had anything in my mouth or nose at all.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: Trigeminal Neuralgia and mask type
Are you using some type of hose management? You can buy one or make your own with a removable Command strip and hair pony tail holder. This is usually used for rainout but I ask because when I used the Swift FX, with the hose directly connecting to the nasal pillows, the hose would pull on the pillows and cause it to leak. I switched to the P10 for that reason.
Or since you are usually on your back, if there was some way to secure the hose to your clothes with enough room to turn your head without pulling on the mask.
Or since you are usually on your back, if there was some way to secure the hose to your clothes with enough room to turn your head without pulling on the mask.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Sleepyhead Software |
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760
Re: Trigeminal Neuralgia and mask type
TN pain comes from nerves at the lower back of your head (not neck tho') and travels to the front, whether or not your MD explained it and I wonder if you' could find a mask that isn't held on by that kind of strap.
Last edited by Julie on Fri Jan 27, 2017 6:37 pm, edited 1 time in total.
-
- Posts: 10
- Joined: Thu Aug 21, 2014 11:07 am
Re: Trigeminal Neuralgia and mask type
Thanks so much for the replies.
I think the hose management idea might be the solution. I definitely know that the
pillows seem to be pulled from their proper place.
As for the TN, it is not an uncommon symptom with MS. I take a
med for neuropathic pain, but I'm at the high end of the dose for that, so maybe
the TN won't stick around too long this go.
Thanks again for taking the time to offer remedies.
I think the hose management idea might be the solution. I definitely know that the
pillows seem to be pulled from their proper place.
As for the TN, it is not an uncommon symptom with MS. I take a
med for neuropathic pain, but I'm at the high end of the dose for that, so maybe
the TN won't stick around too long this go.
Thanks again for taking the time to offer remedies.