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Micheline_h

Active member
Joined
Sep 6, 2009
Messages
43
Reason
PALS
Diagnosis
11/2008
Country
CA
State
BC
City
Campbell River
I was woken up last night unable to breathe, i couldn't put my bi-pap on and scared the heck out of me. I almost called 911, but was afraid they would treche/vent. It only lasted a few minutes, but it sure seemed longer than that. I have noticed I am unable to breathe well while flat on my back. I do have a hospital bed but it didn't help at all. The saddest thing, i thought of my famiy beening in thier home and me at mine.

If anyone have suggestions on what can help in the moment of panick, i would love to hear it.

Thx Micheline
 
I am sorry to hear of the frightening experience you had! This is not the answer you might be looking for but the best thing to do is relax and not panic. I know, hard to do. I have also had those experiences and once I convinced myself to not have an anxiety attack things were much better. Also, the more they happen the easier it gets not to panic.

Why couldn't you get your bipap back on?
Why was it off?

I still have to sleep with my head being elevated at least 30 degrees. Does this not help you?
 
Head off that panic and sleep with your bipap on.

Glen
 
Micheline,

You may have been having a laryngeal spasm. I've had them, and they are scary. Its really best to put the bipap on every night whether you think you need it or not. The bipap won't prevent a spasm (if that was what happened) but you'll feel better and be healthier if you form the habit. I agree with Joel, that the best thing is the hardest thing, to stay calm.

I hope its a long time before this happens again.
 
I have been trying to sleep with it every night for 2 weeks, but after a few hours i wake up and cannot sleep I do take off the bi-pap.... I have sleeping pills too that don't help with the sleep problems. It's not in my throat...it's my lungs. I had re-testing again because the hospital here said it was not clear enough to understand. so now i wait again. Thank you for your replies :)
 
When Rick got his bipap, he was told by the pulmonary specialist that he really should sleep at a 45 degree angle. We purchased a bed that also is raised at the knees so that you don't slide down toward the foot. Looks like he's in a giant recliner. He (Rick) puts a pillow under each elbow so that he is totally supported and his arms aren't pulling at his shoulders.

He looks as snug as a bug in a rug, or as an alien ready for take off, but he sleeps like a baby all night unless he has to take a trip to the bathroom.

I had to get used to the angle too, but found that with a couple pillows arranged in the right places, I can even sleep on my side next to him. If he gets out of bed first in the morning, I end up like a hotdog in a bun crosswise the bed. We try to keep a sense of humor.
 
Mocheline ... I know that panic well. Being unable to breathe is the scariest thing in the world.

I had respiratory failure a couple years ago, and had bouts like that. While they were rushing equipment, the nurses kept telling me to "sip air" ... take tiny, tiny sips of air like you're sipping very hot soup from the edge of a spoon. It sounds silly, but it seemed to work to get a little air coming in and going out again. Once you can start the process, your lungs take over.

It helps to have some remedy in your mind like that to get past that moment of panic. Something concrete to do and concentrate on.

Also, sleeping with an extra pillow or your head elevated is a good idea.

P.S. While I was getting used to the BiPap, I would take it off in the night without waking up completely. For some of us, it's a difficult process, but stick with it. It does help.
 
Micheline - Jennifer has had similar attacks, it is easy to say control the situation and not let the situation control you. It is the best suggestion I give Jen though, to think of something calming. Jen has trouble with her biPap as well but i am there to assist her. The elevated and slightly turned sleeping position does seem to help her more than anything. Hope this helps in some way and keep up the fight. One thing I have discovered in our "short" journey is we can do more than we think we can.

Dave
 
Marjorie, I do all the same things with the pillows...snug as a bug in a rug...lol
Thank you all...I will keep at :)
 
I live with my Dad and he was diagnosed with ALS in Oct/09. He is 82. Dad is having trouble clearing his throat...kinda coughing. He feels as if he has mucous that he can't always cough up. It has kept him up off and on the last couple of nights and I don't know what to do to help him. Any suggestions would be very welcome.
 
Oh that awful mucous! I have the same problem and am sorry to say that there are some things that will help a bit but I am still struggling with it. The best thing is to drink lots of water (or at least as much as possible given the swallowing problems) to thin the stuff out and get and use a suction machine.
 
Hi there.

For my mother regarding that awful mucous feeling, we used to have her kind of sip/hold coca-cola in her mouth, it would cut through that mucous and then we would suction it out. She felt it to be a life saver, also for someone who no longer ate by mouth, she enjoyed the taste. She wouldn't swallow it, but just having that coke in the mouth would make that mucous foam up, strange I know. I heard about it from someone on here.

Good Luck,

Lots of love,
Holly
 
I get that horrible mucas after using my bi-pap...I may just try that, thx
 
Micheline had another episode yesterday morning and had to be rushed to the hospital. After a battery of tests it was discovered that she had 2 blood clots that had reached her lungs. They are holding her and administering some aggressive medication that will bust up the clots. They need to do a better ultra sound of her heart that will be performed tomorrow and search for more clots that they suspect are in her legs. All the indicators showed that she may have suffered a heart attack in the process or was just the stress the clots had put on her heart to pump blood into her lungs so they are monitoring that. Apparently this is a very common side effect from being sediment for so long. She looks well this morning and they are happy with her oxygenation and if all goes well she would be released no later than Wed.
 
Keep us posted Steve, and give my good wishes to Micheline. How scary for her.
Laurel
 
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