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CarolSue

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Joined
Dec 16, 2015
Messages
123
Reason
PALS
Diagnosis
01/2016
Country
US
State
Kansas
City
Middle America
At my last ALS clinic my FVC was 66. Three months before that it was 70. The RT asked if I was interested in using a Bipap. I told him it was my understanding that it was best to get it before I needed it to be able to get used to it.

He ordered it and it was delivered several weeks later. I started using it at night when I went to bed. It wasn't long, and I was getting frustrated. The machine was going down to "4" on the exhale and up to "12" on inhalation. That was fine but it started going up to near 20. I felt like it was blowing air up into my sinuses! Very uncomfortable.

I tried to keep using it until I woke up one morning with debilitating vertigo. I had no idea what was happening to me, only that I felt like I was being thrashed around and couldn't get out of bed. I was given something for nausea and Ativan and told it wasn't related to ALS at the ER. I temporarily quit using the bipap and in the meantime got the rep to help me reset the machine. It's more comfortable now, the range from exhale to inhale is 4 to 10/12. It hasn't raced up to 20 yet.

Just wondering if anyone else had this experience with the bipap and also at what point did you begin using your bipap?? I really don't feel like I need it yet...but was told it would give my diaphragm "a break" and help me to live longer. I actually feel like I can't breathe as well when I remove it after being on it for 2 or 3 hours. Opinions please?? :)
 
I don't really have any advice for you. Tom never could get used to the bi-pap. I felt like he never really gave it a chance as he never tried using it with any consistency. I have heard though that it does take a while to get used to it
 
Hi Carol, I am sure Laurie will chime in very soon. She helped Steve to adjust his settings and now he uses it every night. He had horrible sinus issues and hated using it. Now he sleeps much better and uses it every night. It does give his diaphragm a break.
 
Laurie may be unavailable for a week or so ...

This is something a Resphitory Thearpist assists with
 
Hi Carol,
I had issues with my bipap at first too. I couldn't tolerate the force of air blowing at me. My doctor reduced the rate from 14 to 12 and the RT increased the ramp to 45 minutes. This allowed me to fall asleep before the force was so high. I started out slowly at a couple hours hours and now I wear it all night. Hope this helps.
M
 
At what point (FVC) did most of you start the Bipap?? Anyone get vertigo from it being to high?

Thanks,
CarolSue
 
Hi Margaret...I sent you an email yesterday, hadn't heard from you in a while and just catching up. :)
 
Johns Hopkins won't put ALS patients on BiPAP until the FVC is 50 or below. I gave it a chance, but never felt it was doing anything for me. So after a month, I stopped using it. My hospice doctor said to use it if it helps -- if it doesn't, don't. Bill
 
My doctor is a big believer in early use of bipap. Says it can extend life by 1 to 1.5 years. I was in the 80% range when I started. Was able to qualify because of a sleep study.
 
Damn. That's a shame.

I find mine to be very needed and appreciated
 
Carol, the settings can be improved. Most likely one of them (the ones other than pressure, for example, like the timing parameters for your breaths) is still too high or low. Feel free to post your settings and how the machine feels to you and I can help you tweak them.

Also, for the record, waiting until FVC is 50% is an old guideline and proven inadequate. For one thing, FVC is not the only important measure of breathing as we have discussed before and is being superceded by the combination of measures and symptoms. As another reminder, any doc anywhere (e.g. family practice, internist, neuro, pulmo, allergy, etc.) can write BiPAP.

Best,
Laurie
 
Laurie,
I temporarily stopped the bipap. As I mentioned I thought my vertigo episode was from the settings being too high. I stopped it for a couple weeks and after getting the settings adjusted I started it again. With these new settings I just wondered if it was really even helping. After a few days of using it at night 3-4 hours...I began feeling slighty dizzy again during the day. Not full blown vertigo like I experienced before but just some dizziness. The meclizine helped the dizzy feeling. Anyway I decided to stop it again and see if the dizziness went away. I haven't really been bothered with the dizziness so much in the last several days and have not been taking the meclizine either. I will try it again today or tomorrow and write down the numbers...it's all Greek to me. Maybe you can shed some light. I WANT it to work...just don't want the vertigo. Thank you very much!!

CarolSue
 
Greg, most RTs are manifestly unprepared to adjust PAP in ALS. It's a two-year degree and this is a non-linear disease.
 
My RT has no clue. He looks to me for guidance and I look to Laurie. Laurie, I just want to say how thankful I am for your assistance and kindness.
 
That is very kind yourself, Kim. It is my honor to help P/CALS.
 
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