Breathless episodes in PBP?

[munozg]

My Dad has PBP and he occasionally has these breathless episodes, sometimes it happens after he gets stuck talking to someone on the phone, he feels like he is running out of air, like he cant get air in. It seems to happen mostly when he is under pressure. He runs outside and does some jumping up and down, or runs around really fast and it seems to go away.

Does anyone else have these symptoms, and if so what do they do?

Cheers, Mel

 

[Kevinski]

what i have been told

Hi my name is Kevin from Calgary,I too have PBP ,so far only my speech is affected and getting worse I too get those breathless episodes once in awhile my Neurologist callthem Larango spasms not sure on the spelling,I just relax and try and slowly get a breath in and it passes,can be kind of scary at times take care and I hope your Dad remains as well as he can cheers Kevin

 

[davis08]

bulbar als

I have bulbar als, my fvc is getting low about30%.
I wanted to ask if anybody has stayed on bipap instead
of venting for over 2 years. I want to stay on bipap as
long as possible. thanks for any reply.

Davis

 

[Al]

My Pulmonologist says 18 months is no big deal and others here have been on longer.
AL.

 

[ilovemymom]

Hello-
My mom has PBP and frequently experiences shortness of breath or inability to take a breath. This almost always occurs when she is over-tired (has spoken more, increased activity, etc.) Once the breathing episodes begin she gets very scared and often experiences a panic attack - only exacerbating the problem. The BiPap machine helps, as does Ativan in the event of a panic attack. I find it helps to rub her head and remind her that she will catch her breath, to take slow, deep breaths, and ride through the episode. A very frightening experience, indeed.
m

 

[mandles]

Inability to breath with BPB

Hi, My mum also has periods when she cannot breath - maybe for 30 seconds or so - it is very frightening for her. What is a Bipap machine - I'm sure once we get to her specialist he will recognise these symptons - he is away at the moment and have only seem general doctors who don't seem to know anything!

 

[Al]

Hi and welcome. Sorry about your mum. A Bipap is a bi-level positive air pressure machine. It is used to assist with the breathing of people that have diminished breathing muscles due to MND's. It is set with 2 different pressures, one that breathes a forced amount of air into the lungs and another that is set for the exhale. Most people start with night time use and some people here are using them as much as 24 hours per day. At first it gives the muscles time to rest overnight. As the disease progresses more time is usually req'd. I've been using it since Jan 2005 and still just need it for lying down or sleeping.

AL.