Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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?
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?
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
This would be better taken up with your doctors, soon. Lucky the transaction doesn't last longer, sounds a little scary. Jim
Use data to optimize your xPAP treatment!
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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.
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Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
Can only think your diaphragm needs to readjust after you come off the machine.
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Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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
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
_________________
Mask: Oracle HC452 Oral CPAP Mask |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: EverFlo Q 3.0 Liters O2 PR DSX900 ASV |
Oracle 452 Lessons Learned Updated
DSX900 AutoSV with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-10.0, EPAP Max-17, PS Min-3, PS Max-10, Max Pressure-20, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.21.
DSX900 AutoSV with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-10.0, EPAP Max-17, PS Min-3, PS Max-10, Max Pressure-20, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.21.
- chunkyfrog
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Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
Yes, PLEASE see your doctor.
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Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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.
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.
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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.mkay wrote:I put in my device details but its not showing.... I am on Res med S9 VPAP ST.
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
Current Settings PS 4.0 over 10.6-18.0 (cmH2O) - Resmed S9 VPAP Auto w/h5i Humidifier - Quattro Air FFM
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
You can get a clinicians manual for the device and get a lot more info about it, what options there are etc..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.
Sending you a PM.
Current Settings PS 4.0 over 10.6-18.0 (cmH2O) - Resmed S9 VPAP Auto w/h5i Humidifier - Quattro Air FFM
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin
TNET Sleep Resource Pages - CPAP Machine Database
Put your equip in your Signature - SleepyHead v1.0.0-beta-1
Kevin... alias Krelvin
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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.
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.
_________________
Mask: FlexiFit HC431 Full Face CPAP Mask with Headgear |
Humidifier: HC150 Heated Humidifier With Hose, 2 Chambers and Stand |
Additional Comments: Trilogy 100. S/T AVAPS, IPAP 18-23, EPAP 10, BPM 7 |
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Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
Are you prescribed oxygen along with your cpap? Have you checked your oxygen levels?
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
The clinician manual mentioned above will give you lots of information.
Here is another link to the user manual.
VPAP ST User Manual
Here is another link to the user manual.
VPAP ST User Manual
_________________
Mask: Oracle HC452 Oral CPAP Mask |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: EverFlo Q 3.0 Liters O2 PR DSX900 ASV |
Oracle 452 Lessons Learned Updated
DSX900 AutoSV with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-10.0, EPAP Max-17, PS Min-3, PS Max-10, Max Pressure-20, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.21.
DSX900 AutoSV with HC150 extra humidifier and Hibernite heated hose
Settings: EPAP Min-10.0, EPAP Max-17, PS Min-3, PS Max-10, Max Pressure-20, Rate-Auto, Biflex-1.
Sleepyhead and Encore Pro 2.21.
- chunkyfrog
- Posts: 34397
- Joined: Mon Jul 12, 2010 5:10 pm
- Location: Nebraska--I am sworn to keep the secret of this paradise.
Re: Help, I cannot breathe AFTER I take off my BiPAP (LGMD2i)
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.
In many cases, disease progression will mandate more comprehensive equipment.
It may be wisest to go with these changes when indicated to avoid complications.
_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Airsense 10 Autoset for Her |