Shortness of breath

Status
Not open for further replies.

CamilleQ

Member
Forum Supporter
Joined
Jun 19, 2020
Messages
29
Reason
PALS
Diagnosis
06/2020
Country
CH
State
VD
City
Lausanne
Hi to everybody,

I have a question

I freak out because I feel short of breath.

It comes with when I make little daily task or sometimes it seems to come with no reason. I also feel more difficult to breath when I lie on my right side.

It s like my belly has to push to breath. I also feel like my throat is like thigh and crampy. Also have a pain just at the bottom of my rib cage/stomac.

I have to clear my throat frequently it s like there is thick mucus stuck in. I try to drink a lot to "fluidize"

Sometime my respiratory frequency is a little bit hight but sometime I just feel it s like someone is strangle me or a weight on my chest.
I think I don t use accessory muscles to breath.

I had PFT approximatly 2months ago, I put it in attachment.

I have new ones at the end of the month or in early september.

How is your trouble breathing?
I m affraid and it make me feel unconfortable.

I also want to say thank you for all your past advices, it had help me a lot with pain, for now I really more confortable.
 

Attachments

  • 20200803_193615.jpg
    20200803_193615.jpg
    320.8 KB · Views: 238
Hi Camille, do you have a bipap?
If you are really concerned about your breathing maybe you can get seen earlier so a bipap and/or medications to relax/reduce anxiety a little can be organised depending on where your breathing is at.
 
I agree, a bipap should assist with breathing so it's not as much work. I also struggle with mucus. Do you have, or could you get, a suction machine? Most of the time my caregivers can clear the buildup with a swab but sometimes we use the machine.
 
I m on the way to have it but I have to have PFT first. I also take Lorazepam (Ativen) it help with anxiety but not with breathing.

For the suction machine I really don t know, Dr don t speak about it at all. I m gonna ask my Dr. I think I dont need it because I can cought (I hope).

I feel lost it's like I don t understand my body anymore. It's like everythink is slowing and failing.
 
With the BiPAP, you should breathe better so as to not need the Ativan.

There can be a lot of changes in your body at once, but then things may slow down for a while.
 
Sometimes, when I'm anxious, I'm hyper aware of my body functions. After your doctor determines if you need a BiPap, please talk to him about the anxiety. Anxiety makes everything worse. I had great success with CBD oil for anxiety but I still take Valium which, I'm sure, helps a lot.
 
For sur you are right I m hyper aware of my body because I m an anxious person at the root and also I was an athlete and I know my body very well. It's maybe a vicious cycle that keep my in anxiety. And the helpless and lack of hope don't help.

Question about bipap: does the machine impose a rhythm or can it be triggered by our own breathing and only accompany / support it?

I want to thank you all for your help and support. You are so brave and strong. I hope that one day I will be able to be like you. ❤
 
It can be set in a number of ways. Whichever way works best for you. Some people start with a very low setting, then work up to optimal. The other thing is getting the mask that is right for you. There are dozens to choose from. Laurie is second to none in helping people with settings.
 
That's very kind, Kim. Yes, the idea is to support your own breathing, not for the machine to impose its own. Many people have a "backup rate" set so the machine can start a breath if yours is not starting on its own frequently enough, but that still relies on your own muscles to complete the breath, so it is more like a prompt.

Using the VAPS rate, trigger and cycle settings thoughtfully, we get the machine to match what you do naturally in terms of interval between breaths, how long the breath lasts, how fast the air comes in, etc.

Only if and when your own muscles with support from the BiPAP, cannot complete a breath that takes in enough O2/expels enough CO2, would a tracheotomy, which on average extends life by a couple of years in ALS, be considered if the patient had an interest.
 
Thank you for your knowlegeable explainations. I m gonna see with the therapist when he come, I think we can do adjustment.

It's always good to able to ask questions on the forum, as you are so helpfull.

For the vent: I don't want to be on it and also in Switzerland it's not a choice. We don t have the choice to choose the vent.

We have to make with NIV and palliative care when it s needed.

In a way it's sad for the people they want to live on a vent. They are telling, living on a vent is not a good QOL.
Also it's to expensive and insurance don t want to pay all this care.
 
Status
Not open for further replies.
Back
Top