Weaning off a cpap machine.

Not really an a-fib question but many of us are on C-Pap machines. Has anyone ever been able to wean off their machine? And if so, how did you do it? Thanks irina

[Jhcoop55]

What makes you think that you should wean off CPAP machine? If you do, suggest you consult your doctor and once you are off of it, get a sleep test to determine evthat your sleep apnea has subsided or gone away

I’ve never heard of anyone going off a machine if it is working for them unless their sleep apnea is very mild.

Good luck

[Hidden in reply to Jhcoop55]

Hi jh. Thanks for your reply. I have been on it since 2011 and doing well. I understand all the positives and reasons for using a C-PAP machine. I don't think I 'should' be off the machine but rather curious if it might be possible. If I have to use it he rest of my life so be it but, like anything medical, I am always interested in the possibility of using less equipment, meds, treatments, etc. if there is a safe way to cut out any medical care that can give us back any independence possible. Whatever is helping us stay healthy for me is always worth researching if there is another way to continue to maintain health. I don't think anyone really enjoys sleeping with the cumbersome CPAP equipment but if we have to we do. But, in my opinion, it is always worth looking into other less involved options for needed medical care.😊 Take care. irina

[Jennywren2953]

Hi Irina1975, hope you are well, I was very thankful for your reply when I was awaiting my AV ablation, and am please to say things are going well. I had been on the cpap machine for about 8 months. When I was in hospital for the 16 days prior to having the pacemaker put in I stopped using it. I tried on several occasions, don’t know if it was because of the air conditioning but I felt like I was suffocating. When I went for my first PM check I mentioned it and the technician looked and said I hadn’t had any aponeas since it went in, and the last time I had the check it was the same, so my specialist said I didn’t need it. I didn’t know pacemakers monitored that do that was a bonus about pacemakers I didn’t know. It was a big plus for me as I dreaded going to bed, I didn’t like the machine at all. I have been looking into the watchman device you told me about, I’m going to speak to the specialist about in when I see him in November. Best wishes😀

[npac]

I haven't and don't expect to. But my wife couldn't tolerate hers and after a year of trying different designs changed to an oral device that is similar to what is used for TMJ. So far so good. She's having another sleep test next week to see how well it works.

[CDreamer]

I’m still using mine after 4 years and I sure know about it if for any reason I don’t use it -eg cold. One thing I’ve noticed is that in this warm weather I am sucking up water - the water reservoir is empty every morning.

I also use my mini machine during the day sometimes when in AF & the Mg symptoms appear.

The machine doesn’t worry me at all and the only time I know about it is when the mask leaks it makes a motor bike noise which wakes my husband - who wakes me, which happens usually because it needs replacing.

I’m very interested re the pacemaker comments but as I don’t just have it for SA/AF related complaints I can’t see me ever wanting to not use it as it was the one intervention which improved my QOL more than any other thing I tried and that includes lifestyle changes as well as meds.

I’m wondering why you want to wean off it? I know I was told that I may not need it in the future but that was before Mg was diagnosed.

[Hidden in reply to CDreamer]

Hi CD. I agree. It's not that bad, though, my new machine (my 2nd) seems to have a smaller reservoir and sometimes I do have to refill in the middle of the night. Not the end of the world but annoying. I am always interested in not having to use it forever if something better comes along or if a way for us to stop needing it is discovered. Otherwise, will continue. Not that problematic and we have to do a lot in life medically that we wish we didn't have to. xx irina PS and your right about the noise. It will wake up anyone within a 10 mile radius!

[Hidden in reply to CDreamer]

PS I also want to get one of those small 'travel' models for convenience when napping. I also think they would be good when in the ER. I take my regular one but it's hard to set it up in the ER. I don't like the ones the hospital provides.

[CDreamer in reply to Hidden]

The AirMini is really easy and uses a tablet not water reservoir - it’s literally plug and play and uses smart phone as interface so you can set it for automatic on/off when you take mask off. The only downside is the tablets are expensive and you have to renew every month - whether or not you use it. That one I have to buy myself as the NHS only offer the very basic older S9 machines but they are very robust - just clumsy.

[Hidden in reply to CDreamer]

Thanks CD Will look into it. Sounds like something that I would find helpful. Now that I think about it, lugging the CPAP around is a big deal for many ofus. Age and arthritis have made me rethink respectfully about 'packing lightly'. And my purse has lost significant weight too! LOL

[Solarjdp69]

Irina1975,

I have been told that i need a CPAP unit, but am stubborn and do not think I could stand to have it on me at night. I do use a mouth appliance that reduces my snoring and some of the apnea. What's really helped me a lot though is very simple. When I wake up for any reason, I take some deep slow breaths using the in for 4- hold for 7 - exhale for 8 counts. I do it about 4-5 cycles. I've taken my heart rate and bp in the AM when I am waking up for the day. When I don't do this as opposed to when I DO, and it's pretty dramatic, I find that by doing this anytime I wake up that my heart rate remains in the 68-76 range and bp 135/80ish. When I dont' it's often 90-105 heart rate and bp of 165/110.

You have nothing to lose by trying and it's FREE!

[CDreamer in reply to Solarjdp69]

The CPAP is free in the UK and the point is that you don’t wake in the first place.

It does take some getting used to I went to 3 sessions to learn how to use it well and the expectation was to take about 6-8 weeks to get used to using it for the whole night which I found about right. Now it feels very odd not having it on. The first time I had one on my first thought was - is this really THAT easy to breath.... I hadn’t realised what an effort I was having to make in order to just breath in.

[Hidden in reply to CDreamer]

I really don't mind wearing it-breathing is so easy. What I don't like is packing it up when staying overnight somewhere and 'schlepping' it around-like through an airport. Plus I'd like to save the copays that supplies cost. They really make their money here (US) on replacement masks, etc.

[Hidden in reply to Solarjdp69]

Have you had a sleep study? I highly recommend it. When I had mine in 2011 I was surprised to find I was waking up 60 times an hour. Yes, every minute. This is not uncommon. And the up and down pulse you mention can take its toll overtime. It wasn't difficult adjusting to the machine. (I called it my Darth Vader mask.) Once I saw how well I slept through the night and, better still, woke up so rested I was a convert. Hope you are able to find it might work for you. Give it a try and ask for a sleep study. Just my opinion. CD is right. The whole point is to sleep through the night. Constantly waking up and going back to sleep is hard on our cardiac system and lungs. Take care. irina

[Aprilbday]

I love my CPap. I have less anxiety knowing I can breathe throughout the night. Been using it for 16 years. Full face mask. Love it!

By the way......If anyone saw my post yesterday, I am ok and all is clear. I deleted it to avoid frightening anyone or making them second-guess their treatment.

[chesson]

Hi Irina

I was on a cpap machine for 8 years after a minor brain haemorrhage. I never had the typical apnea symptoms and only knew I had it due to my wife's insistance that I stopped breathing for long periods during my sleep. The cpap stopped the apnea but I never felt any benefit to my general health. After having a stent due to a blocked cardiac artery, I was retested and told I no long had apnea and was taken off the machine. 6 years went by without it and without any obvious problems. I did however have a pacemaker fitted a few years after stopping the cpap, then eventually developed PAF last year. My wife noticed the strange breathing again so I was retested and found to have severe apnea! So now have a machine again. Again, I've never noticed any benefit with the cpap. The moral of the story being that you can spontaneously recover from apnea then if you are unlucky, spontaneously slip back into it. Not sure if my experience will help you, but thought I'd share it anyway. Cheers. Peter.