Trouble breathing what does this mean?

Status
Not open for further replies.

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
I noticed that I am having trouble breathing no matter how deep a breath I take. I am scared,,it's making me very tired and stressed.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
You need to see a pulmonary doctor and get tested to find out what your FVC is! Sounds like you may need a bipap.
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
what is a bipap in everyday life? And why would I need it..
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
BiPAP stands for Bi-level Positive Airway Pressure. It is a breathing apparatus that helps people get more air into their lungs. With the development of BiPAP, air delivered through a mask can be set at one pressure for inhaling and another for exhaling. This makes BiPAP much easier for users to adapt to and also allows neuromuscular disease sufferers to use the device. Because of these dual settings, BiPAP allows people to get more air in and out of the lungs without the natural muscular effort needed to do so.

Your question about having trouble getting enough air led me to recommend seeing a doctor.
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Would I have to wear it alhe time?l Is that the one that goes in your nose? Oh my I am so sad.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Most people start with just using it at night. You can use a variety of different masks.

AL
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Most people start off only using it while sleeping, This usually gives the respiratory muscles enough of a rest the are okay during the day.
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
well that's reassuring kindaof...my last o2 sats were 92 % and its just getting worst I guess its time. thank you
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey happy,
I've been using bipap for almost 4 yrs for sleep apnea. My husband said I used to snore like a freight train. I went to the pulmo for the snoring problem, had a sleep study done, and sure enough had sleep apnea.

I never had thought that I had more energy when I woke up until the last 3 weeks! I have to admit I wasn't always compliant with wearing it at night, fall asleep on the couch, too tired to put the thing on, any number of excuses.

However, in the past 3 weeks, I thought I would try it again. Since my diagnosed of ALS on 6/3/08, I hadn't had any breathing problems, my pulm fx was 96% on 7/1/08, but I do notice some shortness of breath at times. Those menthol cigarettes ( 6 per day ) don't help matters either and I know that.

But it's working great for me now, nothing to fear, we'll help you with it all we can.

keep the faith,
brenda
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Thank you Brenda...I'm stepping out into the unknown with alittle faith thanks to you all.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Happy. I fully understand. When they first raised the possibility of ALS I came here to prepare myself. I figured out that I would be ok if I needed help with daily activities or needed to use a cane or chair, learned to substitute certain activites for those I can do, the whole nine yards.

But I did not prepare myself for having trouble breathing. There is just no way to wrap our minds around that. I joke that breathing is over rated but I feel the anxiety, too. Good luck on you PFT's.

I get my "sniff" test tomorrow, and am no longer freaked out by the idea that my weakness is spreading to my chest muscles. Proof that human nature can get used to anything! :-D

Best luck, Cindy
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
HI Happy,

I have the breathing issue when trying to take a breath in deep. I have had it since last august while pregant and thought it was that. It did not go away after the baby or the recovery. It is not tooo bad, but I have to take a real deep breath in to feel that I am getting a deep breath. I go for a pulmonary vist on sept 9th and I am a little nervous.

BTW, my dad has a bi-pap for his sleep apnea. It seems to help him alot.

bless you!

april
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Robin- I forgot that you basically hae a clean bill of health, (right?) I would have answered you differently if my memory served better. My Pulomnary Doc says that there are 3 reasons for being SOB:
  • Asthma, COPD or some other lung disease;
  • muscle weakness;
  • anxiety.
You might look into anxiety meds. If this is the cause of your breath being short, it is a lot easier to solve than the other two.

Good luck, Cindy
 

safari101

Member
Joined
Aug 20, 2008
Messages
14
Reason
Learn about ALS
Diagnosis
7/2007
Country
US
State
oregon
City
eagle point
C-pap

I have a C-Pap (not a Bi-Pap) at present. It is great. I only use it at night or when I am taking a nap.

My O2 level has dipped to 81%. So I now have oxygen bled into my C-Pap.

It is a wonderful tool, if you need it. If you do happen to require a C-psp or Bi-pap, once you get used to the machine, you will find it is such a benefit. Other than wearing a mask. It is non-invasive.

I get most my answers from my Pulmonary Doc. They even help to refer me for swallowing studies, etc.

Hope this helps :)

Jim
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Jim- After using the CPAP I wake up feeling all shaky inside. My lungs burn like they did when I ran too far (back when I could jog.) I am glad you are able to tolerate a CPAP, though I suppose it does not make much difference. Whatever works, is what I always say!
 
Status
Not open for further replies.
Top