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I am at stage 4 emphasema and wake in panic several times during the night due to breathless. Yet I have been told I don't need oxygen!?

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butter-fly
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18 Replies

Hi butter-fly,

Sorry to hear this, its an unknown without investigation why this is happening, I would only be speculating if I said 'you may be experiencing some symptoms of OSA (obstructive sleep apnoea which is causing you to wake in panic and breathlessness', or it could be something else entirely, these symptoms will need to be discussed with your GP.

Check with the BLF helpline about this further and see what they suggest prior to seeing your doctor. BLF helpline number 03000 030 555, operational normal working weekdays from 10am to 5pm.

Another thing to consider, if you are lying flat, on one pillow, try two pillows to see if that helps at all.

Hope you can get some relief from this soon.

Best wishes BC

Puffthemagicdragon profile image
Puffthemagicdragon

I am also at Stage 4 emphysema. I am on only half a litre/min oxygen, which is very low. We are all different. I am sorry to hear about your sleeping problems and I'm afraid I can't offer any advice as I don't have sleep problems.

Take Blackey's advice and speak to someone at the BLF..

A thought when your at stage 4 its classed as bulla .. A did read somthing about oxygen is not suitable for everone

Am sorry thats all i know .. But what you have said about sleep could be as others say

But when i was shown first symptoms i was waking up breathless like you have described .. Might be chest infection or just your confition having speed wobble

Hope it settles down for you

All the best :)

Toci profile image
Toci

I would mention this to your doctors again as some people need oxygen only when they are sleeping.

rick1 profile image
rick1

I was told by my G.P, that my blood oxygen levels are good so I don't need to go on oxygen!

qbjb profile image
qbjb

Hi butter-fly

Breathlessness is not connected with needing oxygen - I fell into the trap of using oxygen every time I got breathless and I'm sure this has affected me quite badly as I've become very oxygen dependant.

Do you know about pursed lip breathing? Pulmonary Rehab teach this and there is information about it in lots of places (probably YouTube). The thing is to calm your body down so that your breathing and pulse rate drop back and panic is averted.

Hope your GP or nurse can advise and reassure you.

Jude

peege profile image
peege

Hi, good advice from qbjb. There are some examples of pursed lip breathing and diaphram breathing on YouTube.

I have read that if you can paractice for 5-10 minutes, 4-5 times a day it can become more automatic when you need it.

I'm in the process of trying this in order for my brain to get used to it & if I'm poorly it'll be easier for the breathing to kick in. Good luck and I hope you can get PR from your medics. peeg

dhio profile image
dhio

I used to have panic attacks but I started doing pursed lips breathin and now find I do it automaticaly

Miggles profile image
Miggles

This has happened to me, to prove to myself I was getting enough oxygen I bought a cheap pulse /ox finger monitor off the Internet and when I woke up gasping I popped it on my finger and bingo......quite low oxygen saturation, the problem is getting a medical person to believe you, some will and some will not, but they may then give you an over night recording one that will give them the evidence they want.

Good luck

Miggles profile image
Miggles

I forgot to say, they told me that there is a trigger in your brain that wakes you up with a gasp when the carbon dioxide in your blood gets too high, I am not sure but I think hi co2 means low O2 in the case of apnoeas

123podmore profile image
123podmore

i suffer the same ,i rub in my chest vic ,help me to go to sleep, or bottle of wine ,

123podmore profile image
123podmore

good luck ,if you have any solution please let me know thank you

123podmore profile image
123podmore

please what is stage 4 ,what i know is my lung like a 70 years old man

linsabout profile image
linsabout

Im also stage 4 and find I have to sleep propped right up now, if you have an OT they can supply a bed rest or wedge. Its horrible waking up like that.

convoy77 profile image
convoy77

Its not necessarily a lack if oxygen , my mum often woke in the night breathless, it was a case of getting her propped up right and comfortable, mum did get panicky and her doctor prescribed à low dose lorazepam which helped. Speak to your doctor and health care people

convoy77 profile image
convoy77

Its not necessarily a lack if oxygen , my mum often woke in the night breathless, it was a case of getting her propped up right and comfortable, mum did get panicky and her doctor prescribed à low dose lorazepam which helped. Speak to your doctor and health care people

strudle profile image
strudle in reply to convoy77

U need to get sleep study done u might need c-pap to keep airways open. I had sleep study for very same thing and it has helped me. What happens is u stop breathing for a second and it wakes up up lots and lots of ppl have c-paps. Hope this helps.

Lillytan profile image
Lillytan

I have a lung disease and am I'm the process of finding out what it is...but back along when my dr wasn't listening to what i was telling him I bought a oximeter and I took photos if my sats morning, mid day and evening for two weeks...then when I went to my appointment with my consultant he could see that on waking I was around 90 mid day 87 ish and evening 82 on one or two occasions as low as 74... Which was rather scary! I suggest you purchase one also and make notes of your sats....If they drop below 90 it isn't good for your organs.

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