Bulbar & Trilogy Mask.

[carex]

I now use the Trilogy unit all night and the better part of the day, most days. My problem... the extended use of the unit, drys my throat to a near desert like condition.

Because I can't form a seal with my lips, the moving air escapes through my mouth. After a handful of hours (4 or 5)... the dryness sets in. There is no improvement with the 'nose only' mask. In fact, it's worse.

With the full mask, I've taken to biting on a folded, dampened paper towel which helps, but doesn't last through the night. The dryness wakes me and I replace the paper towel with a fresh damp one for the rest of the night. Same holds true for the daytime use... several damp towel replacements during the day.

Being bulbar, I can't drink water to moisten my throat. I do try to rinse my mouth without swallowing the water, but that doesn't always work. The resulting effect is not a fun experience.

The question... anybody else have this problem?? And what might one do to to keep the lips sealed, other than Duct tape??

Thanx for your time and interest.

PS... I do have.a humidifier attachment on the Trilogy. Certainly an improvement, but doesn't do the best job.

 

[lgelb]

Let me just check off some probably obvious things:

Chin strap? (Poor man's version is a hair band, like a dollar at the drugstore)
Room humidification?
Change heater filters that pertain to room?
New hose?
Hose cover?
Change humidifier settings?
Reposition the humidifier higher/lower?

The Trilogy is not known for its awesome humidifier and no doubt some of the Trilogy users here will have other ideas..

I don't think I know anyone who's had to resort to tape, but if you do, try "gentle paper tape" by Nexcare, also available at the drug store.

Best,
Laurie

 

[gooseberry]

If, with Lauries suggestions, you dont see improvement....you could try the nasal pillows during the day, get more fluids thru your peg, get swabs....which look like mini foam paintbrushes, that can be moistened and swished around your mouth.

You could also try fruit juice on the swab.

 

[GregK]

For overnight try Xylimelts

For daytime Biotene makes a spray

 

[carex]

Laurie, I have a tubular styled neck/chin brace to keep my mouth closed, but that doesn't do anything to keep my lips closed tightly. All the other items, save room humidification, are complied with (regularly). I was jesting about the Duct tape, but the Nexcare product just may have to do the trick. I'm currently awaiting a new hard neck brace, but I don't expect it to solve the lips problem. Thanx

Goose.., the nasal pillows don't really do the trick. Day or night. I've tried on several occasions with no positive result. Swabs are ok for temporary relief. I guess I'm looking for a longer term 'preventative measure'. I know optimistic at best... Thanx

GregK, I'll definately look into Xylimelts. I haven't heard of this product before. Biotene and I don't get along to well. Thanx

Bottom line... investigate room humidifier, Nexcare and Xylimelts. Thanx guys & gals.

Toodles

 

[affected]

How much water do you take each day through the peg?

I know the issue is not dehydration as such, but you are obviously losing fluids through the mouth and upping your fluid intake a lot may help.

 

[carex]

60oz of nutrition and about 30oz H2o daily. Maybe another 10/15oz H2o might help? We'll give it a try.