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islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
Hi i was diagnosed with PLS last year and have had a steady decline. Last week I was at the ALS clinic in Vancouver for follow up. The neurologist was setting up a Respiratory consult.
I have difficulty speaking, have had to modify my food choices to limit choking etc.
I woke up this morning with a nasty headache, and struggled to wake up. As I was in a half wake/sleep state I noticed I dont seem to be taking much air in. Its like my breathe is a sip of air, yet I can take a deep breathe when Im fully awake.
I don't want to panic, but I also don't want to have my partner wake up to a corpse.
Do I need to call the clinic? I hate having people worry but this kinda worried me.
Thx
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
652
Reason
PALS
Diagnosis
11/1985
Country
US
State
IN
City
Fort Wayne
Your headache and difficulty waking are classic signs of diminished respiratory function. The first signs typically occur overnight when both sleep and lying down affect breathing. Even though the odds are that you won't die in your sleep in the next few weeks, this isn't a good time to play the odds. I would recommend calling the clinic to find out if the respiratory consult has definitely been scheduled. Describe your sudden change in breathing and ask that the consult be moved up if possible.
 

islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
Thanks for your reply, i will contact the clinic. After reading some of the posts I think I posted in the wrong forum, sorry about that.
I only saw posts about breathing problems in the ALS forum, so posted my question here.
Take care
 

Bad Balance

Senior member
Joined
Dec 10, 2010
Messages
815
Reason
PALS
Diagnosis
12/2010
Country
US
State
GA
City
Atlanta
Yep peers, don't fool around with this
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
959
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Most definitely call the clinic and let them know. Hopefully they can get you in right away, and do some pulmonary function tests. In the mean time sleep with your head and upper body raised at least 30 degrees. A VPAP or BiPap helps a lot with that, but you do need a prescription for one.
 

islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
Update
I called the ALS clinic and spoke to the nurse who wasn't concerned. She thought I probably had a virus or congestion. She said if I hadnt heard from the Respirologist's office in 2 weeks to call back.
I put the whole problem to the back burner, however my partner is concerned I'm not breathing properly at night. I confessed my own worries and the call to the clinic. I haven't been sick lately, but had asthma years ago. I found my spirometer and found todays readings half of my previous normal. It feels restrictive breathing in. I'll contact my GP tomorrow, I think the nurse doesn' t know me well enough yet, and really didn' t explore my symptoms.
I'll get the head of the bed raised today.
Thanks for the helpful suggestions. This whole illness and changes have come so fast, its surreal.
2 years ago I was skiing double black diamonds, now I'm shopping around for PWC><. But that's not a unique story I know, just slow getting my head around it all.
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
935
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
I'm glad you're continuing to seek help with your breathing issues. It's surprising what the ALS nurse said! Waking up with a headache could signify you are not expelling carbon dioxide and may now need a BiPAP. Don't let this slip. Take care. Yasmin.
 

islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
My GP came by today and has ordered pulmonary function test for the end of the week. He also has me scheduled for a. Night time O2 study sometime prior to Friday. He wants to get those things done before I see the Respirologist.
He's advocated for me before so I am confident he'll get things happening if those tests are abnormal.
Thanks for the help, I'm always a bit hesitant to push on these things. Sometimes I need a push.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,976
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
glad you took the push and are getting it looked into now by someone you trust to look after you!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
you need to let the neuro know what happen with his nurse--how could she not be concerned! that is ridiculous--you have PLS and breathing issues are nothing to gloss over.
 

islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
That's a good idea Barbie. I'm going to get the results of the tests first so I can back up my complaint with hard facts.
On the bright side, I read on this forum that those little nose " thingies", Breathe Right, strips can help. I got some, and while they aren't a solution, I do notice a better air flow through my nose. The struggle to breathe is a bit less and any improvement is welcome relief.
The bar is so low, lol. So I'm wearing these little nose things 24/7.
There are some great Tips in the Tips and Tricks forum. My next purchase is satin pj's. Bedtimes are dreaded, between not being able to breathe or reposition I'm exhausted.
Thank you for the support.
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
652
Reason
PALS
Diagnosis
11/1985
Country
US
State
IN
City
Fort Wayne
Just a thought... I don't know your age, but if you are pre-menopausal, the sudden change to poorer breathing could be related to shifts in hormones in the days preceding a period. I had a couple of days of breathing problems and general drop in strength until my doctors prescribed medication to stop my cycles. A consult about getting BiPAP is still in order though.

Did you know that a woman's hormone levels are most like a man's when she is pre-menstrual? That may account for mens constant irritability, moodiness, etc.!
 

islandgirl

New member
Joined
Apr 7, 2013
Messages
7
Reason
PALS
Diagnosis
12/2012
Country
CA
State
bc
City
Vancouver island
I'm still grinning after reading your post.
I'm happily post menopause at 56. I had a relatively easy time.
 

dalvin

Senior member
Joined
Sep 12, 2013
Messages
956
Reason
PALS
Country
US
State
va
City
richmond
I have the same issue with the breathing, shallow breaths, wake up groggy and frequently with headaches that lasted most of the day. At my first clinic visit the doc prescribed a trilogy bipap. breathing was at 60%. Please make sure you stay after the doc to get your resp. checked. It's a serious matter.
 

Flyby

Active member
Joined
Jul 2, 2012
Messages
40
Reason
PALS
Diagnosis
10/2012
Country
CA
State
British Columbia
City
Nanaimo
Good doctors here on the Island and if you are in my area the NRGH pulmonary function people are great. So is the ALS team over at GF Strong Center on the mainland. Keep on it and don't be afraid to use the emerg if it gets too bad. Hugs

Remember a short cry once in a while fills the glass back up so we can enjoy life!
 
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