I have had yet another middle of the night bout of fighting for breath with sweat pouring down my face.
It is so frightening trying desperately to get breath and no one about to help. Not that I know what they could do anyway but sometimes you feel the need to share the misery.
I really do not know how to deal with this so any advice would be welcome. I try the pursed lip breathing but because I am struggling to breathe in, it is a bit difficult to breathe out. 10 or 15 minutes can seem like a lifetime.
Also my O2 levels seem to dropping quite a bit. They are regularly in the low 80's/high 70's so that is a bit worrying as well.
I am not on oxygen because I am CO2 retentive.
Sorry to ramble on but there is no one else about at this time of day and you know what they say about it being good to talk ........
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greatauntali
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I'm sorry you are struggling so. Night time does seem to magnify problems. I know a fan sometimes helps. Set it to blow gently across your face. Do speak to your respiratory nurse for advice. You could also ring the BLF helpline on 03000 030 555. They are lovely people with a lot of knowledge. I am sure other members will have some helpful tips too. Hang in there.
Thank you. I'm afraid I do not like air blowing on my face so a fan is out. I do not have a respiratory nurse. I used to be on the telehealth care scheme but that stopped a few years ago because they reckoned that I could manage. The scheme was a bit patchy because any response seemed to depend on which nurse was on duty that day.
Hi, greatauntali, so sorry you are having problems,
Mrs mummy has some good advice there.
Do you prop yourself up on a number of pillows at night, that helps me. I too woke in a cold sweat, trying to cough but it hurts! Can you try breathing gently through your nose after you try the pursed lip breathing ....try and relax your diaphragm and tight shoulder and upper chest muscles . Easier said than done I know.
Everything is always worse at night, especially with the wind blowing outside.
You tube relaxation videos help me too......but I would get professional advice in the morning, and if you feel really bad phone for help.
Thank you, knitter. I do sleep propped up. I have been unable to lie flat for some years now. It is very difficult to breathe at all when you are desperately trying to clear mucus.
You are right about everything seeming worse at night. I am convinced that I am going to die while leaning on the wash hand basin in the downstairs toilet because I seem to get stuck there. Could be worse, I suppose.
O2 levels below 88% can damage internal organs - what you are suffering is not normal. Can't have oxygen because you retain Co2 ... excuse my ignorance but isn't that what BiPAP is for?
I would suggest seeing a health professional today and not taking no for an answer - no one should have to live like that
Call the GP and when they say he can fit you in two weeks next Thursday say you'll be sitting in the surgery in an hour until they do see you!
Sorry but I have no idea what BiPAP is. None of the health professionals I have seen have mentioned this at all.
The good news is that there is not usually any problem getting to see a GP here. The bad news is that once you get so low, every little thing requires a major effort and the thought of getting to a stage of reasonably respectability fills me with dread. A change of clothing for example, takes more strength than I have at the moment.
The previous time when I had one of these episodes, the GP asked what I had done about it and I replied that I had done nothing, what could I have done and she replied that I should have called for help. When I said that I did not have the breath to call anyone, she suggested one of those alarm systems but I have no idea what a non-professional can do to help me. I live in a fairly remote area and professional assistance is quite some distance/time away from me.
It would be useful to know if there is anything that any " lay " person can do to help in these circumstances, given that I do have a husband, deaf though he is.
Hi again, I know what you mean about everything seems to be so much effort. I often haven't got the energy to get undressed, but please find the strength to ring your GP today and tell him/ her exactly how you feel. If you can't speak I am sure that there is a way of contacting help via your phone, just by pressing buttons .
The instructions are on the Internet, but I have forgotten where, I will check today.
There is help available. Please let us know how you get on.
Remember the BLF helpline is open during office working hours......they are excellent .
Some of my friends have an alarm system, and the firm can contact emergency help for you, a paramedic or ambulance if you need it.
I have been in this situation since Friday evening, I've woke up around 2am every morning like you struggling to get my breath and harsh coughing even though I sleep propped up with 3 pillows and a v shaped pillow. The fact that I have no natural saliva ( sjogrens ) doesnt help me as I can't swallow until I have a drink or spray. My oxygen levels have dropped to 92 which is border line so I agree with everyone that has adviced going to see your gp or calling the help line. Take care, Linda x
greatauntali a bi-pap is a device that's worn when we sleep that's used for a number of reason. I wear one because I retain carbon dioxide and at night when my oxygen drops in the 50s, this is when I need the bi-pap the most. Over a period of about 10 years I've worn both devices. As I breathe in the machine pulls air out. There's also a device that's called a c-pap. The two do basically the same thing except the bi-pap is used in individuals' that need a higher air flow. I read the article that Offcut listed in their post about carbon dioxide retainers. I don't see where it says that oxygen retainers shouldn't wear oxygen.
Again I'd like to reiterate how important it is to get those stats up. Anything below a 88 begins a road of possibly to return..
There's one thing I'm certain of... you came to the right place for help. This group has taught me more about my disease than any doctor ever has. They'll listen and be there for you whenever needed. Once again good luck and I'll pray for you.
Absolutely y_not, you took the words out of my mouth about the bi-pap. I too retain O2.. I'm still on oxygen though, just set at a lower setting and Bi-pap at night which helps tremendously... Best of luck to you greatauntali and as mentioned above please seek medical help right away, those stats in low 80s is possibly causing more damage to your other organs from being starved of oxygen.
Sarahem1965 Hi Sara, I think you have a typo there where you say you retain O2 when I think you mean to say retain Co2. This could be confusing. I am. Is retaining O2 a problem? JoHarr
I know what it's like, it is difficult when in a full blown panic but forget all about breathing in, it is breathing out that you need to concentrate on. Breathing in will take care of itself. The reason you cannot breathe in is because your lungs are already full of air, you need to expel the air first. Trust me, breathing in WILL take care of itself, it is a reflex action and happens automatically. Do not try to force the air out violently, slow and gentle is the way to go, breathing out for longer each time staying as calm and relaxed as you can.
Thanks for that advise I didn't realise that's the way to go. I try my hardest not to panic especially when i have my grandson staying with me as he has bad asthma, and that's what I keep saying to him. Take care.
This is a horrible feeling and one that we all have at times. I have started using Superdrug Mucus Cough syrup (tastes vile) and after all these months taking prescribed decongestants I have finally found something that actually works. I have asthma/COPD. If you can't get to your GP get him to come to you x
Firstly with those O2 levels you need to see a medic of some sort ASAP.
As for the panic breathing, whenever I have a SOB time I sit on a firm dining chair lean slightly forward to open the lungs and then take deep breaths in and then slowly breath out and try and empty the lungs ready for the in breath again. With you controlling this should take the panic breathing away and get you into a more natural cycle.
CO2 retainers I am sure can have still get this dealt with, this link does state O2 should not NOT be given lifeinthefastlane.com/ccc/o...
Some years ago I described an incident like this to my nurse. She immediately said"That is when you phone 999. Do not wait. Get help. That is what we are here for. Promise me?" I have had to only once and they were there in 10 minutes.
Hi I emphasise with what you are going through I have terrible panic attacks and I can't get my breathe. It really scares me I am on oxygen since December and regularly have low sats dropping to the 60s and below. Now at the other end of the scale I have sometimes woke with Sats of 98 which can be very worrying because. I am a oxygen retainer .I have been hospitalised often stabilised sent home then the whole thing starts. Again I wish you well best wishes x
If you cannot breath and lie down because of lots of phlegm on your lungs which makes you cough when you lie down, please look up Active Cycle of Breathing Technique (ACBT) on Google or Youtube. You may not be able to take in the deep breath it suggests, but if you can the breathing exercises will help you to cough up the phlegm and your breathing will become easier. I do ACBT every night before going to bed and could not go to sleep without doing it. I do it in the mornings too.
Posative asked what is ACBT? With my condition I produce mucus on my lungs all the time. I was taught ACBT by a physiotherapist and I do ACBT in the morning and evening. It has completely changed my life as now I don't cough during the day and I can lie down in bed. There is lots on the internet about ACBT; this is a good site youtube.com/watch?v=XvorhwG... I was taught to do it lying down on each side but it can be done sitting up.
Very occasionally I still have a bit of phlegm left that rattles and I then use my Flutter device (There is a similar device calle the acapella).
You could perhaps put your head over a bowl of hot water with a towel over your head so that the steam helps to to loosen the mucus. There is lots of information on the web on how to cough up mucus.
When you feel this bad ALWAYS ring 999, it doesn't matter if you can't talk - they will work out how to communicate with you AND will get proper help. Meantime, talk to the GP about emergency medication (antibiotics & steroids) that you can keep at home ready for such events.
I keep a supply of emergency meds. which I have had to use 6 times this year so far but these seem to be one-off episodes ( thankfully ) where I am coughing to trying unsuccessfully to get rid of the mucus and then ending up gasping for breath as well.
I have to say that the only thing which helped me yesterday morning was my GTN spray which I have for angina.
Are you prescribed Carbocisteine, this is intended to help thin the mucus, also (although hard to use during an exacerbation) a flutter device - it does help ease the coughing to release mucus.
Sorry, feel like I'm "banging on" - just trying to help
I am on Carbocisteine but have yet to enquire about the flutter device. It is on my list to ask about when I visit the GP.
Thanks for " banging on " , my memory is getting really poor and I need a constant reminder, believe me. I think ( hope ) that this is down to the medications.
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best wishes JoHarr
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