De-sensitizing again

[ellen1159]

I've had my machine for six weeks today. By now, I should be sleeping through the night and should have had my first follow up appt with the sleep doctor, but alas, I'm one of those panic-stricken types with claustrophobia who can't keep the mask on more than 90 minutes (have dozed off twice but awakened shortly afterward). After not touching it for a week or so, I decided to try again to desensitize myself with the mask and machine. I wore it for an hour last night while watching tv and although I did have initial breathlessness and sense of not being able to breathe while putting mask on (Quattro FX, supposed to put on with air blowing to inflate edges for seal), it quickly went away, and once I adjusted the straps for leaks I was okay with it on. Was able to keep my mouth closed in mask so air didn't fill up my cheeks. Nasal congestion didn't bother me while machine was on.

I think I can do this. I'll wear it again for an hour for the next four nights, then schedule naps on the weekend.

Not sure this has anything to do with anything, but for the past week I've been following a fairly strict low fat vegan diet (with some lapses, of course) and I've lost six lbs. Naturally, I'm thrilled to be able to get into slacks I couldn't zip up a week ago, but would this modest weight loss have anything to do with my having an easier time with the machine?

[49er]

Hi Ellen,

Congratulations on your weight loss and progress. That sounds fantastic.

Piece of advice - Don't "should" on yourself as we are all different regarding our adaptation to pap therapy. And you have a tough challenge with your high pressure requirements. But it sounds like you are are on the right track.

49er

I've had my machine for six weeks today. By now, I should be sleeping through the night and should have had my first follow up appt with the sleep doctor, but alas, I'm one of those panic-stricken types with claustrophobia who can't keep the mask on more than 90 minutes (have dozed off twice but awakened shortly afterward). After not touching it for a week or so, I decided to try again to desensitize myself with the mask and machine. I wore it for an hour last night while watching tv and although I did have initial breathlessness and sense of not being able to breathe while putting mask on (Quattro FX, supposed to put on with air blowing to inflate edges for seal), it quickly went away, and once I adjusted the straps for leaks I was okay with it on. Was able to keep my mouth closed in mask so air didn't fill up my cheeks. Nasal congestion didn't bother me while machine was on.

I think I can do this. I'll wear it again for an hour for the next four nights, then schedule naps on the weekend.

Not sure this has anything to do with anything, but for the past week I've been following a fairly strict low fat vegan diet (with some lapses, of course) and I've lost six lbs. Naturally, I'm thrilled to be able to get into slacks I couldn't zip up a week ago, but would this modest weight loss have anything to do with my having an easier time with the machine?

[avi123]

I see two issues in your post today:

1) A psychological medical condition of I'm one of those panic-stricken types with claustrophobia who can't keep the mask on more than 90 minutes (have dozed off twice but awakened shortly afterward). Usually, Psychiatrists deal with such Phobias. As I understand it, by prescribing Xanax.

2) The bolts and nuts of the XPAP, mask, etc., to getting it work optimally. Six weeks is too short a time to draw conclusions. It took me more than a year just get going.

[pootsie]

Keep on keepin' on, Ellen! Good for you.

[John from Brookston]

You're doing great, Ellen. I took me almost 5 months before I could sleep all night on the hose, and that was with my doctor giving me Klonopin for the anxiety, which I'm now weaning myself off of.
Congrats on the weight loss, too!

[pootsie]

This brings to mind something that the respiratory therapist did at my sleep study taht helped. (By the way, I had a great team and I think I was very lucky in that. Not everyone gets the first-rate crew I had.)

Instead of just slapping the thing on me and turning out the lights, the RT sat with me for a bit. He put the mask on me WITHOUT connecting it to the machine at first. So I had just the mask dangling from my face whil he adjusted, and talked to me, and made small talk about nothing at all. After a while he held the hose up near the connection, but no fully connected, so it blew just a bit of air in. Then he moved it closer but still not fully connected and asked me a few questions. And so on. It was about ten minutes from the mask first contacting my face to being fully connected.

It really made it easy for me

Perhaps some of this might help?

[ellen1159]

thanks everybody for your kind words and support. I hope I can do this without requiring medication. I think I can, it's just a question of getting over that inital blast of air with my high pressures. I really want to be one of those hoseheads who doesn't even notice the machine anymore.

I'm very fortunate in that the sleep center I go to has a remarkable nurse/PA (not sure of her title, but she's been helping CPAP patients for 17 years and knows her stuff) who runs a support group that meets periodically, and who is available to anyone who reaches out to her for help with their machine and mask. I'm going to see them next week and I'm hoping by then to have been able to sleep a little bit with the machine.

[BlackSpinner]

Please make sure you have a letter of medical notes that you are having a real problem adjusting to cpap, otherwise the DME could come literally busting into your house to remove the equipment for non compliance. It has happened before.

[Gparr]

Ellen,

I am one of the most claustrophobic persons you would ever meet. I struggled severely for one week. I asked my GP to prescribe a sleeping aid to get me through...it didn't work. Then last Monday, I decided to pay my DME a visit and demand to try a nasal mask. OMG... I can't believe the difference! No anxiety...no panic!!! It made all the difference in the world to get the FF mask off of me. I talked with my DME this morning to ask if I can try a nasal pillow...I will pick that up,next Monday.

Moral of the story...keep at it and try different things...you never know...it just might be the ticket to "freedom"!

[ellen1159]

Please make sure you have a letter of medical notes that you are having a real problem adjusting to cpap, otherwise the DME could come literally busting into your house to remove the equipment for non compliance. It has happened before.

I'm going to bring that up with the sleep doc. My DME rep, when she gave me the Amara mask two weeks ago, told me to wait another four weeks to mail in my chip/card that the DME downloads to check my compliance, in hopes that I'd be using it more. Hasn't happened yet. I'm a bit confused about the status of my equipment. I paid the DME $897 out of my own pocket when I took possession of the machine. That's a bit less than the cost of the machine w/o the humidifier. I don't have any papers that say whether this is a rental or if I purchased it. Shouldn't they have given me something that spells out the terms of the equipment? My provider is Lincare, in Connecticut.

[BlackSpinner]

Please make sure you have a letter of medical notes that you are having a real problem adjusting to cpap, otherwise the DME could come literally busting into your house to remove the equipment for non compliance. It has happened before.

I'm going to bring that up with the sleep doc. My DME rep, when she gave me the Amara mask two weeks ago, told me to wait another four weeks to mail in my chip/card that the DME downloads to check my compliance, in hopes that I'd be using it more. Hasn't happened yet. I'm a bit confused about the status of my equipment. I paid the DME $897 out of my own pocket when I took possession of the machine. That's a bit less than the cost of the machine w/o the humidifier. I don't have any papers that say whether this is a rental or if I purchased it. Shouldn't they have given me something that spells out the terms of the equipment? My provider is Lincare, in Connecticut.

It is really hard to tell from that amount. They should give documentation but mostly they don't until they have the insurance clarified.

[hawaiimom]

Hang in there Ellen, you can do this!