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RTJKWBACE

New member
Joined
Jul 14, 2021
Messages
2
Reason
PALS
Diagnosis
12/2020
Country
US
State
MO
City
Davisville
Hello everyone
My name is Chris, I am a wife a mother and a grandmother and I live in Missouri. My symptoms start in Feb. of 2020 in the Bulbar (speaking). I was diagnosed with ALS Dec. of 2020. I am still able to talk and be understood but I dont have enough air to talk and do anything else. I am still able to walk with help of a cane or walker. I know this will probably change soon, so I am trying to keep my independence as long as possible. I was given a Bipap machine to use in the evenings and at night, and it seemed to help but then I got vertigo and it has stopped my use. Its been over a month, I have been to Drs and most of them say they have never heard of a Bipap causing vertigo but when I Google it there seems to be alot of people who have experienced it. I am hoping maybe someone in the group has experienced this and have some suggestions to help me get back on the Bipap. I have also recently started the Healey trials and am on Zilukoplan shots every day but It has not caused any side effects or changed anything so I assume I am on the placebo. There is so much about how to live with this desease that I dont know and I am digging into the forums to learn as much as I can. Like I wonder who thought to put their pills in applesauce because it helps them go right down and saved me many of chokingings and disolving pils on the tongue case it wouldnt go down. That person was definitly a genius! Thank you all for talking about this horrible desease and ways to make it not so horrible. I look forward to talking with you all and learning.
Chris
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
549
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Hi Chris. I’m so sorry you find yourself here, but I’m sure you will benefit from the many amazing people on this forum. I personally have found it to be very therapeutic as many of us have become virtual friends—which sometimes turn into face-to-face friendships—with many common interests and experiences.

I will leave it to our wonderful moderators to follow up on your Bipap question. Laurie in particular is many times more knowledgeable about non-invasive ventilation than any pulmonologist or RT I know, and she’ll help you with adjustments.

Do not be reluctant to post about anything. Best, Kevin
 

lisa g

Senior member
Joined
Apr 17, 2019
Messages
571
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
Welcome Chris also sorry to find yourself here. You'll find alot of good information and tips on adapting here. I get frequent bouts of vertigo but had gotten them long before my diagnosis. If you view on YouTube you will see the Eply method to relieve your vertigo, or if your doing physical therapy the therapist would be able to help.
 
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lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,730
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi, Chris, nice to meet you while sorry you are here. If you never had vertigo before starting the BiPAP, most likely the settings are not quite right and you are basically hyperventilating while on it, either through too much air at one time, breaths that are too frequent, or both. I will PM you about helping you tweak those.

Best,
Laurie
 

RTJKWBACE

New member
Joined
Jul 14, 2021
Messages
2
Reason
PALS
Diagnosis
12/2020
Country
US
State
MO
City
Davisville
Hi Laurie, my account says I am not able to reply to your message. I have a Phillips Respironics DreamStation. The model is AVAPS
I am thinking the Provider Therepy is the settings you need . Thank you so much for helping me.
Epap 4.0 Ipap (up) 25.0 Ipap (down) 9.0 VT 320 BPM 12 TI 2.0 All alarms are off Aain thank you so much
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,730
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
No worries, I PM'd you my email in my earlier message. You can use that to contact me with the rest of the info I requested in that message. But yes, it looks like your settings can use some work.
 
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