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twitchykitty

Distinguished member
Joined
Feb 17, 2013
Messages
102
Reason
PALS
Diagnosis
01/2013
Country
AUS
State
qld
City
South Burnett
Hello 😀

I was wondering what symptoms people experienced when they first started having breathing problems overnight ?
My last lung function was 33% but my co2 was fine that was 7 months ago
Lately I've been sleeping 10-12 hours and I'm still tired. I don't get headaches I can just get a fuzzy head and about 6 hours after I wake up could easily go to sleep again
I don't feel breathless when I lie down but when I wake up during the night my chest feels strange similar to a tight or heavy sensation that goes away quickly on waking and sleeping on my back when I wake it feels like I'm not quite getting enough so I roll on my side and it's way better

Can anyone relate to this?
 
Oops not quite getting enough air on my back
Sorry
 
What kind of Bipap are you using?
 
No bipap not until my co2 goes up
Booked for test next week
 
Kitty,

With an FVC @ 33%, I'm very surprised you aren't on BiPAP. I think you'd benefit greatly using BiPAP overnight, it should give you more energy and stop the fuzzy head feelings. I'd push for one if I were you. (I use one)

You say your CO2 is "fine"; was it measured first thing in the morning? Do you know what your O2 sats are during the night?

Good luck next week,
Ells.
 
From what I'm reading of Aussie guidelines, which are based on the worldwide literature, w/ that FVC and your symptoms, they should have already ordered BiPAP for you.
 
Australia is different they won't give u one unless your co2 goes up. I had a sleep study 7 months ago my o2 would only drop to 90%
Which didn't qualify
They told me in a teleconference just yesterday the blood gas didn't have to be done first thing in the morning, and yes I was under the impression it did ?
 
Yep getting bipap in Australia is difficult in a different way to in the US.

However, if your doctor orders it, there is no problem, in that you can have it.

My Chris wouldn't opt for bipap until it was too late and sadly our pulmonologist insisted on not just a one night sleep study in a hospital, but two in a row! This was not to see if he could have one, they could see that he was in deep trouble breathing. It would have to be at the Gold Coast (2 hours drive north for us) because of his physical needs. He was crapping on that the first night would be to work out his levels and the second to ensure they got the bipap settings right. Chris had already had pneumonia and after we agreed to it all, he then pulled out saying don't bother.

They finally phoned me with the appointment date for the sleep study a couple of weeks after he died.

However, if you have a good doctor, (are you seeing Hendo?) you may be able to get something better in place earlier? Honestly our issue was more Chris having FTD and therefore resisting anything that would help early. By the time a sleep study was in discussion he needed to be hoisted into a hospital bed. If he had taken bipap months earlier a sleep study could have been done easily and locally.

The best thing is a sleep study where they can see your blood gases changing through the night. Definitely an early morning CO2 test will tell you a lot that you need to know.
 
Hello Tilly
Yes I am under dr Henderson at prince Charles I worked in respiratory as a nurse at rbwh so I couldn't go there for privacy reasons
I've already done the sleep study as I said and they really do have strict guidelines. I'm sorry to hear about your loved one, it does sound like his breathing struggles were further along than mine, although I'm not far off a hoist myself. For me it's a 3 hour trip and yep I don't want to do another sleep study unless my co2 is up or I feel it's a waste of time for them and me as there's much sicker people out there needing a hospital bed , I'm not struggling for breath I just feel the increased effort when fatigued or when waking on my back
I completely understand how Chris felt by the time I gave into a walker I had a fractured jaw then concussion and in hospital won't let anyone help but mum.
 
The fatigue is the main bummer sleeping the day away and feeling awful if I go out for 2 hours or having visitors that Long leaves me feeling real fuzzy and sleepy again . For now I can deal with it and wait, sounds stupid I'm more worried my cats won't sleep with me if I get one lol .
 
Igelb
I have read the same guidelines myself and even spoken to my gp who agrees I should have one however that is not the case
And they have said outright 7 months ago I do not qualify for the reasons I have mentioned
I'm guessing back then they said quote I was compensating well o2 & co2 wise and didn't need it and other than getting fuzzy headed wearing I apologise for saying but a bra or talking too long I wasn't symptomatic
 
Kitty, 7 months is a long time in the life of a PALS!!

For sure it would be great if none of us needed BiPAP, but if it's needed, it should be available to you.
Travel of 3hrs to the hospital must tire you out!
 
Ells
It certainly does I feel like a ping pong ball with the turning and stopping and starting especially my head!
 
Kitty,
I think a BiPAP would help you a great deal and give you a better quality of life. Maybe your primary care doctor could call your ALS doctor and see if they can get this done for you.
 
Kitty, Hendo diagnosed my Chris, but of course at the clinic there at RBWH. I didn't know he saw people at PC, that's good to know.

Is it Hendo holding back on bipap because of sleep study?
We only went back once more to clinic because it wasn't worth the travel. Being in NSW all our services were coordinated here.

But other local PALS here were on bipap. Of course you are also going through QLD health which has it's own extra complications.

I'm sorry to hear you have had serious falls too. I hope you now use equipment very safely.

I believe your gp could order one couldn't he? Laurie here could help you work out the settings, especially since you have a nursing background it would be easy enough.
 
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