Old 02-12-2018, 08:28 PM #1 (permalink)
SanDiegoSue's Avatar
New Member
 
Join Date: 2017
City: San Diego
State: Ca
Country: USA
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 39
SanDiegoSue is on a distinguished road
SanDiegoSue SanDiegoSue is offline
New Member
SanDiegoSue's Avatar
Join Date: 2017
City: San Diego
State: Ca
Country: USA
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 39
SanDiegoSue is on a distinguished road
Default Trouble using BiPap

Iím short of breath, so I was given a BiPap. It terrifies me. I often breath out of my mouth, so they gave me a full face mask. Iím claustrophobic, so I panic. Iívebeentrying To force myself to use it, but I canít seem to last more than 5 minutes. Have any of you had this problem? How did you learn to use the BiPap?
SanDiegoSue is offline   Reply With QuoteReply With Quote
Old 02-12-2018, 09:16 PM #2 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,277
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,277
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: Trouble using BiPap

I am so sorry you are experiencing claustrophobia. Others here will likely have a variety of solutions, but I will tell you of my experience and what was recommended to me that worked, in the hopes some of it might help you.

I went through 5 different masks before I found the one that fit. I tried two different nose only ones, one that was kind of like a cannula and two full nose/mouth ones. I tried a chin strap to keep my jaw shut while using the nasal masks, but it just didn't work.

It also took a while to get the right air pressure- when the air wasn't going into my nose and rushing out of my mouth or being swallowed by me in my sleep, it was creating painful pressure in my nasal passages and giving me earaches. It helps to have someone who knows what to set it at work with you to make it as comfortable as possible. Laurie (Igelb) is a master at this and provided me invaluable advice.

The one I currently use sits over my mouth and nose- it's "comfortable", but intrusive. It took a while to get used to it. I was cinching it too tight, afraid it would leak air- it was painful and left bruising on my cheeks and nose. Once I loosened it a bit, it felt less intrusive and didn't leak as I'd feared.

I started by using it only while I was awake, and only for 10 or 15 minutes at a time when relaxing in my lounger. Once I got over the crawling "get this thing off of me" feeling, I started using it at night. I'll be honest, I take some really excellent drugs to reduce spasticity in order to get me to sleep, and to remain asleep the night through- so once I'm out, I won't wake up for 7 to 8 hours. At which point the mask gets removed immediately. While it is intrusive still, I don't wake up feeling totally wretched, foggy and with a headache the way I did before getting the breather.

It's definitely better to get used to it before you absolutely have to use it. Another completely unexpected bonus to the thing was my skin is in better condition than it has been in years. I guess ample breathing and appropriate levels of oxygen really is good for your skin!

Best of luck. You may never like the feel of it, but with time you can learn to tolerate it. The benefits of using one really do outweigh the discomforts.

Last edited by ShiftKicker : 02-14-2018 at 02:09 PM
ShiftKicker is offline   Reply With QuoteReply With Quote
The Following 3 Users Say Thank You to ShiftKicker For This Useful Post:
affected (02-12-2018), CarolSue (02-12-2018), wishmobbing (02-13-2018)
Old 02-13-2018, 01:57 AM #3 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trouble using BiPap

SD Sue, I'd be happy to help. Do you know what kind of machine you have and/or what the settings are? What is hardest about using it?

Ideas to think about: reduce the pressure to start with (I don't mean a ramp-up; I mean literally start with an IPAP of 4, i.e. a constant pressure like you might have with a CPAP); try a nasal mask -- many PALS who are "mouth breathers" tolerate a nasal mask well; use it while you are doing something else, even listening to music and sync your breathing to the beat; use it when you are dead tired, etc. Everything ShiftKicker says is true.

And make sure you have enough humidification, but not too much. It's winter even in SD!

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
The Following 2 Users Say Thank You to lgelb For This Useful Post:
KimT (02-13-2018), wishmobbing (02-13-2018)
Old 02-13-2018, 06:50 AM #4 (permalink)
DetroitLakesMN's Avatar
New Member
 
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
DetroitLakesMN DetroitLakesMN is offline
New Member
DetroitLakesMN's Avatar
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
Default Re: Trouble using BiPap

I use Nasal Pillows instead of covering both my mouth and my nose with a face mask and it works great. I automatically keep my mouth closed but open it as I choose. I'm not drowning or suffocating this way. I have been using it for twenty years. Also I use C-PAP and not Bi-Pap - I hate Bi-Pap. I am in control with C-Pap..
DetroitLakesMN is offline   Reply With QuoteReply With Quote
Old 02-13-2018, 09:32 AM #5 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,783
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
♥ Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,783
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Trouble using BiPap

Detroit your CPAP is likely for sleep apnea? I am glad it works well for you at this point

CPAP is not a safe option for PALS with respiratory weakness because the constant pressure does not allow PALS to exhale against it. Exhalation will be even harder than if they use no respiratory assistance leading to CO2 buildup

I recently heard a respiratory therapist suggest one way to ease into things was to try the mask without being connected to the machine to get used to it. This was in addition to the wearing in the daytime while distracted by tv or other activity

Last edited by Nikki J : 02-13-2018 at 12:05 PM
Nikki J is offline   Reply With QuoteReply With Quote
Old 02-13-2018, 12:03 PM #6 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trouble using BiPap

Ditto everything Nikki said, DL, and the BiPAP actually affords you more control over, well, everything. If you don't like the BiPAP after using CPAP, it wasn't set right for you. In fact, it can be set as a CPAP as I suggested to SD Sue (4 across the board to start, no variability for achieving a target volume) and then moved to therapeutic settings from there.

You can set a low pressure on CPAP to have a low pressure to breathe against, but the IPAP will not be giving you a deep enough breath because it cannot be set independently of the EPAP.

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
Old 02-14-2018, 01:47 AM #7 (permalink)
Inventor's Avatar
Member
 
Join Date: 2012
City: Espoo
State: Southern Finland
Country: FI
Diagnosed: 12/2012
Interest: I have been diagnosed with ALS.
Posts: 181
Inventor is on a very distinguished roadInventor is on a very distinguished road
Inventor Inventor is offline
Member
Inventor's Avatar
Join Date: 2012
City: Espoo
State: Southern Finland
Country: FI
Diagnosed: 12/2012
Interest: I have been diagnosed with ALS.
Posts: 181
Inventor is on a very distinguished roadInventor is on a very distinguished road
Default Re: Trouble using BiPap

I had problems at first because of too insensitive triggering.
Inventor is offline   Reply With QuoteReply With Quote
Old 02-14-2018, 12:38 PM #8 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 5,176
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Trouble using BiPap

Yup, trigger/cycle settings that match your breating are critical to comfort (and respiratory support!)
lgelb is offline   Reply With QuoteReply With Quote
Old 02-15-2018, 01:11 AM #9 (permalink)
DetroitLakesMN's Avatar
New Member
 
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
DetroitLakesMN DetroitLakesMN is offline
New Member
DetroitLakesMN's Avatar
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
Default Re: Trouble using BiPap

Those nasal pillows only vs face-mask can make a big difference too..
DetroitLakesMN is offline   Reply With QuoteReply With Quote
Old 02-15-2018, 01:13 AM #10 (permalink)
DetroitLakesMN's Avatar
New Member
 
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
DetroitLakesMN DetroitLakesMN is offline
New Member
DetroitLakesMN's Avatar
Join Date: 2017
City: Detroit Lakes
State: MN
Country: USA
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 18
DetroitLakesMN is on a distinguished road
Default Re: Trouble using BiPap

Your not in the "trap" then..
DetroitLakesMN is offline   Reply With QuoteReply With Quote
Reply

Tags
bipap, problem


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Trouble with right leg Runner872 Do I Have ALS? Is This ALS? 2 07-14-2017 06:06 PM
Think im in trouble... Msims Do I Have ALS? Is This ALS? 20 08-06-2016 04:30 PM
Having trouble pwh3000 General Discussion About ALS/MND 6 11-07-2010 01:24 AM
Don't want anyone to get in trouble, but...:D Steve100 General Discussion About ALS/MND 7 11-06-2007 11:32 AM
Trouble with dad nic01 Current Caregivers (CALS) 5 03-25-2006 10:57 AM


All times are GMT -5. The time now is 07:00 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016