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New member
Apr 7, 2013
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.
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.
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
Yep peers, don't fool around with this
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.
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.
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.
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.
glad you took the push and are getting it looked into now by someone you trust to look after you!
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.
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.
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.!
I'm still grinning after reading your post.
I'm happily post menopause at 56. I had a relatively easy time.
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.
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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