Bipap and heart

[MisUse]

I have used my bipap every night since early June, after many years of battling with it. For info I have reduced lung function due to scoliosis, aortic leak and stenosis, and AF. As the summer went on my breathing got worse and worse, lung function had shown to be slightly worse, so put it down to that. But breathing continued to get worse, ankles swelled up which I put down to heat, but swelled half way up shin which has never happened before. Got so bad went to A and E on 13th Sept. Kept in for 9 days, not lungs, but did find on echo that valve may have got slightly worse. Waiting on appt with cardiologist at Brompton. Now here is the strange thing. The night I got home I was so tired I fell into bed and did not use bipap. Have not used it since, and my breathing, although still bad is nowhere near as bad as it was over summer and while in hospital. Has anyone heard of bipap creating breathing problems specially for those with heart issues. I'm thinking bipap may be making my heart work too hard. Does this all sound bonkers?

[hufferpuffer]

No but it's very interesting, I don't use a bi pap as my sats don't go too low when I sleep. I hope someone can come up with some answers and I hope you continue to improve.😊 huff xxx

[Watfordgirl]

Sorry you've been so poorly, Misuse. Must have been very scary for you and you still don't know what's going on. Good that it's getting a bit better.

I know that breathlessness can be caused by lung or heart problems and made worse by the heat. If you've got increased breathlessness that will make your heart work harder. I've got a BiPAP machine which I've used every night for over two years. It actually 'breathes' very slowly - if you hold your breath while it's on you'll see what I mean. I doubt whether this would put a strain on your heart. They're normally given to CO2 retainers to get rid of the O2 we're not breathing out at night. Were you advised to use it when you were in hospital? Is there a respiratory nurse you could phone for advice?

You're not bonkers and I hope you feel you can breathe more easily soon. This game can be pants at times, can't it?

Love, Sue x

[MisUse in reply to Watfordgirl]

Thanks Sue. When you remove your mask in the morning how do you feel. My breathing gets very tight and struggle for quite a while heart faster. Does this happen to you? This is why I'm wondering if settings may be too strong?

[Watfordgirl in reply to MisUse]

You could be right about that. I feel it's not that easy to breathe and always have my reliever inhaler then start taking the mountain of tablets. It eases quite soon.

Who checks your machine? The respiratory nurses come out every six months but I haven't seen anyone since Dec 1st. If I were you I'd phone in the morning - they'll have a record of what your machine is set at.

Try sitting up and steadying your breathing before you take it off. Concentrate on the outward breath. Have you got an oximeter to check your pulse and O2?

Keep in touch - I'll be interested to know. x

[sassy59]

Interesting thought MisUse and hope you get some answers. Take care. Xxxx

[Hidden]

Hi. I use one but I haven't noticed any problem with it. Perhaps the settings need adjusting? If you ring the respiratory nurses they can talk you through changing the settings over the phone. All the best.

[MisUse]

Just seen this and thought I would update. Had 2 sleep studies at Brompton, early this year, one all night on machine, and one half on machine and half off. Consultant said I should def use machine as Carbon dioxide drops a lot when I sleep. We had a long chat and she has changed the pressures right down, she said they were quite high. Not getting the same horrible breathing problem when I come offf the machine, and when I went to clinic in March she said my readings were really good. I like seeing this consultant, as she is a highly specialed in people like me with respiratory problems due to scoliosis. We shall see how I get on