Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)

I have what scouring the site seems a unique problem, firstly I have LGMD with heart failure and diagphramatic dysfunction. I have central apnea quite frequently but my main problem is just reduced diagphram effort once asleep.

I have no issues with the mask, airflow, breathing with it etc but when I take of the mask/turn off the device (ie back on atmospheric pressure) I struggle to breathe, the sensation is of having someone sat on my chest.

This occures after only 30seconds of use. Has anyone else experienced this?

This would be better taken up with your doctors, soon. Lucky the transaction doesn't last longer, sounds a little scary. Jim

mkay... none of us are in the medical field. This forum is about lay people helping each other regarding sleep apnea. May I suggest that you contact your doctor. He/she is in a far better position to give you the accurate answers you need. Much good luck to you and please come back and let us know how you are doing.

Can only think your diaphragm needs to readjust after you come off the machine.

Those problems sound as if you are or should be on a ventilator type machine like an ST or an ASV or something like a Trilogy to mention a few in the Respironics line up.

I concur with the suggestion that you see your pulmonary or muscular dystrophy doctor before this becomes an emergent situation.

Just looked this condition up and here is a link.

http://www.musculardystrophyuk.org/app/ ... gmd-2i.pdf

Yes, PLEASE see your doctor.

Morning folks, thanks for all the replys.

Will definatly take it up with them, they gave them to me a week ago and then went on annual leave, so I am awaiting their return.

I put in my device details but its not showing.... I am on Res med S9 VPAP ST.

I understand little of what the device shows on screen as the acronyms are different from those used on here, so I dont know my pressures etc.

It does feel exactly like I need to wean back to atmospheric but it doesnt seem to be an option offered on the ramp.

mkay wrote:I put in my device details but its not showing.... I am on Res med S9 VPAP ST.

There is No CPAPTalk Descriptor active for that unit on the forum. Units that are older are not shown on the forum as the links they generate take you to cpap.com entries. That unit is no longer sold.

Just go to the User Profile section and add to your signature in your profile to add: Resmed S9 VPAP ST

Ref:
https://sleep.tnet.com/cmd/unit?id=82

mkay wrote:I understand little of what the device shows on screen as the acronyms are different from those used on here, so I dont know my pressures etc.

It does feel exactly like I need to wean back to atmospheric but it doesnt seem to be an option offered on the ramp.

You can get a clinicians manual for the device and get a lot more info about it, what options there are etc..

Sending you a PM.

Hello mkay,

Welcome to the forum. You and I are similar in that we both have a Muscular Dystrophy. For a while, I was diagnosed with some kind of Limb-Girdle, but now they believe I have a Congenital Myasthenic Syndrome.

I started using the Trilogy (mentioned earlier) in 2010.

As others have suggested, talk to your doctors about this.

In the meantime, I'm around if I can help you.

Are you prescribed oxygen along with your cpap? Have you checked your oxygen levels?

The clinician manual mentioned above will give you lots of information.
Here is another link to the user manual.

VPAP ST User Manual

It may have to wait until you can see your doctor.
In many cases, disease progression will mandate more comprehensive equipment.
It may be wisest to go with these changes when indicated to avoid complications.