DME: Using Tape "Is Creepy"

I was going through a spell where my leaks were very high and I kept seeing the red angry face for my leak status. I finally diagnosed the problem as the mask fit loosening when my face shape changed during the night so I tightened it to begin with. And it worked. Last night the leak status was 2 instead of the 35 of previous nights. But in the interim I contacted the LPN at my DME. She has been very helpful in the past. When she learned I was using tape to keep my mouth shut because other methods don't work she said, "Don't use tape. It's creepy. You might not be a good candidate for CPAP." She also said that they don't worry about the leaks unless it goes over 35. I told her I would try yet another chin strap. After talking to her I was discouraged for a day but then thought the heck with that and kept using tape. But I will try another chin strap because it would be nice to not use tape. The FFM ends up in my mouth and the larger size is too big.

I couldn't imagine a DME trying to discourage someone from using CPAP but there you have it!

jaycee2 wrote:I was going through a spell where my leaks were very high and I kept seeing the red angry face for my leak status. I finally diagnosed the problem as the mask fit loosening when my face shape changed during the night so I tightened it to begin with. And it worked. Last night the leak status was 2 instead of the 35 of previous nights. But in the interim I contacted the LPN at my DME. She has been very helpful in the past. When she learned I was using tape to keep my mouth shut because other methods don't work she said, "Don't use tape. It's creepy. You might not be a good candidate for CPAP." She also said that they don't worry about the leaks unless it goes over 35. I told her I would try yet another chin strap. After talking to her I was discouraged for a day but then thought the heck with that and kept using tape. But I will try another chin strap because it would be nice to not use tape. The FFM ends up in my mouth and the larger size is too big.

I couldn't imagine a DME trying to discourage someone from using CPAP but there you have it!

My response to her would be telling someone they aren't a candidate for cpap is creepy when obviously, you are a long way from trying everything under the sun to make your therapy work.

Yes, I agree, a healthcare worker (generous description) telling a patient that they "may not be a good candidate for <fill in the blank>" because one thing that they're trying makes the healthcare worker feel "creepy" is really not a helpful or professional response to a patient. There are lots of things to try that can help cpap to work better, and if taping works for you, fine. The main thing is that you need to be on cpap, so you need to do what makes it work for you. Glad I haven't run across that kind of attitude from my medical providers. But your reaction is appropriate, just ignore that part of their "advice" and move on.

jaycee2 wrote:I was going through a spell where my leaks were very high and I kept seeing the red angry face for my leak status. I finally diagnosed the problem as the mask fit loosening when my face shape changed during the night so I tightened it to begin with. And it worked. Last night the leak status was 2 instead of the 35 of previous nights. But in the interim I contacted the LPN at my DME. She has been very helpful in the past. When she learned I was using tape to keep my mouth shut because other methods don't work she said, "Don't use tape. It's creepy. You might not be a good candidate for CPAP." She also said that they don't worry about the leaks unless it goes over 35. I told her I would try yet another chin strap. After talking to her I was discouraged for a day but then thought the heck with that and kept using tape. But I will try another chin strap because it would be nice to not use tape. The FFM ends up in my mouth and the larger size is too big.

I couldn't imagine a DME trying to discourage someone from using CPAP but there you have it!

She sounds rather ignorant (even if she is nice). Things are getting pretty messed up by the time leak numbers are getting to 30. Therapy pressure and reporting of events can get compromised when leaks are high, especially if it's more than just a few brief moments of leak. I think Pugsy has said that Mr. Red Frowny Face shows up when 30% or more of the time was spent in large leak territory.

I think it's good that you found your center quickly and went back to what works for you. Tape is the only thing that works for me too. I actually agree that it's "creepy," but quitting treatment because you don't like using tape is creepier.

kaiasgram wrote:

jaycee2 wrote:I was going through a spell where my leaks were very high and I kept seeing the red angry face for my leak status. I finally diagnosed the problem as the mask fit loosening when my face shape changed during the night so I tightened it to begin with. And it worked. Last night the leak status was 2 instead of the 35 of previous nights. But in the interim I contacted the LPN at my DME. She has been very helpful in the past. When she learned I was using tape to keep my mouth shut because other methods don't work she said, "Don't use tape. It's creepy. You might not be a good candidate for CPAP." She also said that they don't worry about the leaks unless it goes over 35. I told her I would try yet another chin strap. After talking to her I was discouraged for a day but then thought the heck with that and kept using tape. But I will try another chin strap because it would be nice to not use tape. The FFM ends up in my mouth and the larger size is too big.

I couldn't imagine a DME trying to discourage someone from using CPAP but there you have it!

She sounds rather ignorant (even if she is nice). Things are getting pretty messed up by the time leak numbers are getting to 30. Therapy pressure and reporting of events can get compromised when leaks are high, especially if it's more than just a few brief moments of leak. I think Pugsy has said that Mr. Red Frowny Face shows up when 30% or more of the time was spent in large leak territory.

I think it's good that you found your center quickly and went back to what works for you. Tape is the only thing that works for me too. I actually agree that it's "creepy," but quitting treatment because you don't like using tape is creepier.

Kaiasgram nailed it. Foregoing "tape" or anything else that isn't harmful is ridiculous. I've been using the "partial taping method" described by others on this site for over a year now, and it's what in large part has enabled me to settle into my cpap therapy and make full use of it.

I agree with the comments above. Using tape does strike me as creepy, but so would using a colostomy bag or using a CPAP mask. If I have to be a little creepy to save my life, I'm gonna be creepy!

Occasionally I'll have patients who have a complication of the procedures we do on my floor where their eyes become damaged and they need their eyes sewn shut for weeks with just a small hole left open to apply drops. I can't imagine telling one of them they look "creepy" and that is far worse than some tape over the mouth at night. Sometimes you have to do what helps. She should be ashamed of herself.

I'm considering using tape in some form in the hospital after my surgery.
Maybe I'll cut a few home-made chin-up strips, so the hospital staff won't be too freaked out.
Either that, or I will just leak.

Thatgirl wrote:Occasionally I'll have patients who have a complication of the procedures we do on my floor where their eyes become damaged and they need their eyes sewn shut for weeks with just a small hole left open to apply drops. I can't imagine telling one of them they look "creepy" and that is far worse than some tape over the mouth at night. Sometimes you have to do what helps. She should be ashamed of herself.

Okay, I hope that's a prank reply... if it's not I am definitely creeped out (tho I would never tell someone that). Is that like having your jaw wired shut?

Sir NoddinOff wrote:

Thatgirl wrote:Occasionally I'll have patients who have a complication of the procedures we do on my floor where their eyes become damaged and they need their eyes sewn shut for weeks with just a small hole left open to apply drops. I can't imagine telling one of them they look "creepy" and that is far worse than some tape over the mouth at night. Sometimes you have to do what helps. She should be ashamed of herself.

Okay, I hope that's a prank reply... if it's not I am definitely creeped out (tho I would never tell someone that). Is that like having your jaw wired shut?

It's not. I work in a blood and marrow transplant unit. It's a last ditch resort when we have someone at risk of going blind from corneal ulcerations when they have such bad graft vs host disease. It's an ugly world out there in BMT land.

Well...if she isn't sleeping with you, why would she care?

The Ruby Red is a popular headstrap and I recommend it, especially if you get the adjustable version with the velcro on the straps. This allows you to adjust it JUST right even after it starts to stretch out, which they all do eventually.

Tatooed Lady wrote:Well...if she isn't sleeping with you, why would she care?

Maybe she was considering it?

yaconsult wrote:The Ruby Red is a popular headstrap and I recommend it, especially if you get the adjustable version with the velcro on the straps. This allows you to adjust it JUST right even after it starts to stretch out, which they all do eventually.

As a matter of fact that is the third type I'll be trying. I ordered it from our host. I'm hoping that it will be the third time is the charm rather than three strikes and you're out. With the other two I had to adjust them so tightly to keep my jaw from dropping that it gave me TMJ pain.

The Ruby Red was not so bad; it took a full seven minutes for my migraine to arrive.