Question & 3/4 of a diagnosis

Status
Not open for further replies.

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,748
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There is no such thing as "too gross" here, Houston.

There should not be saliva leaking from the mouth if the right mask/size/machine/humidifier settings are used. I have never heard of anyone choking on their saliva while using BiPAP. However, if someone begins coughing, but still needs the BiPAP support, the settings can be adjusted in seconds to make that easier (e.g. remove the backup rate and target volume, and switch to a fixed IPAP). This is one of many reasons why every CALS should know how to adjust BiPAP settings on the fly. I'm always happy to help.

Also, keep in mind that many people use nasal masks (that go over the nose, not the mouth), not full face masks (that go over both). There are more nasal mask choices today that make it more likely that PALS can use nasal masks.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
278
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
One benefit from the VA that hasn't been mentioned is monetary--a monthly stipend, tax free, that varies by condition/progression, that for me is now over $4200/month. Helps a lot. And PVA (in Iowa at least) is incredibly helpful.

Ed
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Thanks, Laurie. I’m already having a bit of trouble with over-salivating as it stands. I’m afraid of how that would work with the mask. My neuro prescribed me something for it but we haven’t started that up yet. Don’t know how effective the med will be. But I suppose if I can use the one that fits over the nose, it’s a moot point.

@[email protected] That’s very good to know.
 

rmt

Active member
Joined
Sep 18, 2019
Messages
69
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
Sorry for having the wrong information about needing a diagnosis from the VA. I thought that is what they told us, but I guess I misunderstood.
 

rmt

Active member
Joined
Sep 18, 2019
Messages
69
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
@IslandL8dy My husband has over-salivating issues too and they started him with atropine drops. He really didn't like them because they made his mouth too dry. So either he was drooling constantly or his mouth felt like the desert. Not fun! He recently started using glycopyrrolate and it is going much better for him. We are still working on getting the optimum dosage, but it seems to be cutting his saliva down in a more consistent way. And there are apparently a lot of other options for excess saliva issues. So even if the first one you try doesn't work, there may be other options you can try.
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
@rmt Good to know! That’s exactly the med, and I’d been avoiding trying it because I hate dry mouth. Also, dry mouth = dental issues for me. But I also don’t like this leakage. I literally wake up in the night dabbing. Thank you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,181
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
My sister took that and was allowed by her neurologist to adjust the dose within the prescribed range - that is, skip a dose on days she felt especially dry. If your prescription is not written that way you could ask if it would be ok for you
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
364
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
I also use atropine drops for extra saliva. 1 drop under the tongue is all you need. I use it only when I feel the need. It does dry you out quickly.

As far as my Trilogy mask, I use the mask that goes over your mouth. I tried the full face that covered both mouth and nose and felt it was to claustrophobic. With the mask just covering my nose I'm able to sleep 8 hours comfortably without issues.
 

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Thank you, @lisa g It helps to hear about others’ experiences.
I screwed up my nerve and took the dose of the medication tonight. It turns out, it’s wonderful. It’s almost like how things used to be for me. Very happy.
@Nikki J , you mentioned your sister could adjust according to what kind of day she was having, and that’s just what my doctor said as well.
 
  • Like
Reactions: rmt

IslandL8dy

Member
Forum Supporter
Joined
Mar 6, 2021
Messages
19
Reason
DX MND
Diagnosis
03/2021
Country
US
State
TX
City
Houston
Update:
The Motor Neuron Unit (turns out it’s actually called the ALS Clinic) just called to schedule me! I’ll be seen in just a few weeks, no waiting for diagnostics. All because of my neurologist’s expediting the process and the advice I received here.
Thanks, everybody. :)
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,016
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
that is really great news - we are behind you, please keep us posted
 
Status
Not open for further replies.
Top