breathing [Archive] - ALS Support Group

Micheline_h

11-11-2009, 01:49 PM

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

joelc

11-11-2009, 05:05 PM

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?

GlenBrittle

11-11-2009, 05:22 PM

Head off that panic and sleep with your bipap on.

Glen

rose

11-11-2009, 05:26 PM

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.

Micheline_h

11-11-2009, 08:07 PM

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 :)

Marjorie R. Wilcox

11-11-2009, 08:48 PM

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.

BethU

11-11-2009, 08:56 PM

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.

Dave C

11-12-2009, 07:32 AM

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

Micheline_h

11-12-2009, 05:16 PM

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 :)

Why my Dad

11-12-2009, 07:59 PM

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.

BarryG

11-12-2009, 08:59 PM

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.

hopealive

11-12-2009, 09:35 PM

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

Micheline_h

11-12-2009, 09:52 PM

I get that horrible mucas after using my bi-pap...I may just try that, thx

SteveS

11-15-2009, 03:46 PM

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.

laurel

11-15-2009, 05:07 PM

Keep us posted Steve, and give my good wishes to Micheline. How scary for her.
Laurel

crystalkk

11-15-2009, 05:29 PM

Please keep us posted... Hope she is feeling better soon.

BarryG

11-15-2009, 10:41 PM

Thanks Steve, I hope that she can get out if the hospital soon.

BethU

11-15-2009, 11:05 PM

I'm praying for Micheline, and hoping she is out soon. That is a scary situation ... very, very serious. I'm glad they seem to have it under control.

Tips on the mucus are very helpful. I'm going to try the coke idea. My worst time is when I change positions; if I've been lying down and sit up, it seems to fill my airways. I'm also going to get a portable suction machine. Barry, I think you said you have one, and I've found one online. (not cheap, but I don't want to be without one).

Why My Dad ... maybe a cough assist would help. I just was told that I'm supposed to be using it regularly 3 times a day to clear gunk out of the lungs. I thought it was just for emergencies, and it doesn't create a "cough." It sounds like I'm gargling when I use it, but was told it should be a regular part of my regimen. I've only had it 11 months! You'd think somebody would have mentioned it before!

BarryG

11-15-2009, 11:26 PM

Hi Beth, this is the portable sucker I have.

Res-Q-Vac Hand Powered Emergency Suction device (http://firstrespondersupplies.com/resqvac.htm)

As I said, I haven't used it yet but I am going to give it a try tomorrow and I'll let you know. And I am going to try the Coke treatment too if I can figure out to put it into my mouth.

SteveS

11-16-2009, 08:50 AM

I saw her a few times yesterday and she was definitely looking better and very anxious to get out. They are running more tests today and we will know better after that. I will tell her everyone has been sending well wishes. Will update after work and I stop in and see her.

lmaire

11-16-2009, 12:47 PM

There is a spray we used for my husband that would relax the back of his throat if a spasm woud come. I believe it was Lorazepam? Anyway, you need to stay elevated and try to relax if that happens. He always described it as someone putting their hands around his throat. Wear the bi-pap with humidifier. If you are worried about an emergency and having artificial respiration. I suggest having a living will put into place.

There is a chewable tablet over the counter called Papaya Enzyme that helps keep the mucous thinner. Also, there is a medication call Amitryptyline that can help dry some of that up. Dr. would have to get it for you.

Hope this helps. Lisa

11-16-2009, 03:28 PM

Give her my best Steve.

AL

indigosd

11-16-2009, 03:41 PM

I hope that she is out of the hospital quickly! Tell her we are all thinking about her and sending good thoughts her direction!

SteveS

11-16-2009, 09:54 PM

They did a complete scan for more clots and looks like that is it. They are however looking more closely at her heart. Haven't gotten the results from that yet but Mich seems to think it wasn't great. She was watching the tech as he was doing it. They took over 200 pictures I guess. She should get the results from that tonight or tomorrow morning. I passed along everyone well wishes.

KinzaDAF

11-17-2009, 12:05 AM

I will keep you both in my prayers. Please keep us posted!

Debbie

laurel

11-17-2009, 12:15 AM

Thanks for the update Steve. You both are in my prayers. Keep your chin up.
Laurel

kimsu

11-18-2009, 10:21 AM

My husband, Robbie, was diagnosed in August - he is 76 and over the last year has progressed to the point where is capacity is 30%. I have seen him become anxiety ridden when he gets the "I can't breathe" feeling....I must admit, I give him an Atavan (he definitely panics as well), which has been prescribed as needed. Usually, within 20 minutes he is feeling less anxious, and on goes the bipap. He won't put it on when he feels anxious.....good luck to you! kimsu

Micheline_h

11-25-2009, 01:19 PM

Thank you all for the kind words. I am at the house and feeling much better. I will have to remain on blood thinners now, ugh. I will have to see a heart specialist as my doctor says i am having contraction issues with my heart now. Let me tell you I would never want to go through that again...eye opening for myself and where I am in my life!! Take care :)

joelc

11-25-2009, 01:24 PM

I am very glad you are feeling better! I hope everything clears up and stabilizes.

BarryG

11-25-2009, 01:55 PM

Micheline, glad that you are home and feeling better. Take care of yourself and your heart.

Kimsu, welcome to the forum.

Barry

handinhand

11-25-2009, 03:17 PM

So glad that you are back home....What a scare for you and Steve. I hope you feel better real soon and that nothing more will happen with your heart. Thinking of you and you are in my prayers. Big Hug, Linda

SteveS

12-19-2009, 09:02 AM

Just a small update. Last Sunday night/Monday morning @ 1am I was awoken by Micheline yelling from the bedroom. It happened again (respiratory distress). I tried to manually bag her for an hour and finally called 911. She has been in the hospital again ever since. They found an infection in her system along with pneumonia hiding behind her heart. She was placed in ICU. She was unable to breathe without the bi-pap machine for most of the week but the last few days has been better. They moved her to the regular ward. They are blasting her with antibiotics around the clock and feel she may be able to get out over the next day or so.