PAF to permanent AF

[Bettiehough]

I had PAF SINCE 2105 with 2 huge attacks that needed emergency cardioversion and then PAF was kept at bay with different medications. From September last year i had 4 episodes of which 2 resulted in hospital visits and has been experimenting with different medication as i am senssiitive to medication gnerally. I also have Mylgic encephelyalitis a neuro immune disease that has me bed bound mostly and if i do go out i use a power wheelchair Got a attack 10 days ago decided to just double my dose of sotalol and see what happen as my heartrate was lower than previous attacks where i could go up to 220. My heart rate went lower and i am about between 100-133 now. I saw my NHS EP [paid privately as i could not get an appointment before sept on the NHS] and am now in hospital waitiing for electrical cardioversion. Intravenous drip did not work. I never have been in AF that long and feels extremely unwell as AF really makes my ME symptoms much worse. Who of you have made transition from Paf to AF and how dit it affect you? I am not a good candidate for ablation due to enlarged left atrium. Sleep apnea has been recently diagnosed as well as high blood pressure. I am in tablets now for BP and goes as low as 89/58 and very dizzy. Who got better when sleep apnea was treated with CPap machine? Feeling very discouraged and hungry. Am nil per mouth every day as i could have cardioversion and only hear later in the day if i will get it or not as i am NHS in the UK and dependent on capacity. I am feeling very discouraged

[CDreamer]

So sorry to hear that, I also have a neuro-muscular condition which means I can’t take any Heart meds other than anticoagulants and sometimes I still get very symptomatic AF episodes despite 2 ablations. I have learned to live with it and use Mindfulness to help me cope. Be very careful with Sotolol as it isn’t recommended for AF in U.K. and can cause other arrythmias.

Many people find being in persistent or permanent AF is actually easier to live with than PAF - your body eventually adapts and you don’t suffer the symptoms as much - but everyone is different.

I find coping with 2 serious, chronic conditions makes life very complicated medically - having sedation is very problematic for me so my EP is proposing these 2 procedures without sedation just morphine. Mmmmmm have to do a lot of meditating for that!

I am currently waiting on a Pace & Ablate procedure - doesn’t cure the AF but does help with the symptoms.

I was prescribed CPAP in 2014 - best thing ever and really reduced the symptoms and frequency of episodes so YES! I use it during the day when AF kicks off and upsets my Mg and will often help end an episodes and certainly reduces symptoms.

Best wishes

[Bettiehough in reply to CDreamer]

Thanks C Dreamer that’s helpful. We are now considering buying a CPAP machine as went to private sleep clinic in SA and said I have moderate sleep apnea. Can you recommend a model and which type of face mask to use face or just nose

[CDreamer in reply to Bettiehough]

The NHS go with ResMed - they have a great website - but other models are available. I use the NHS model - which is an old one - but the NHS are very good at replacements etc as it can get expensive. About £700-£1000 for the basic machine - then you will need mask replacements about every 3-6 months and filters and straps and so on. Best thing is to go to ReMed clinic if you are going to continue privately and get good advice and a good fit mask because then you can try various models. Basically there are 3 types - pillow masks which are very similar to the oxygen ostrich inserts - they are lightest and most flexible but I couldn’t get on with those at all, then nasal masks which just cover the nose area which I eventually settled on and full marks which covers nose and mouth but I found too clumsy as I like to sleep on my side and the mask would slip.

Remember you will need to have been prescribed a CPAP machine by a doctor and that all equipment is VAT exempt with that prescription. You will also need the script for the pressure setting which is vital and very individual although the more modern machines are variable. I have the NHS model for everyday at home and a ResMed mini-airsense for travel.

Link to ResMed resmed.com/uk/en/consumer.html

This is the site for private purchases

mysleep.resmed.com/GB/en/CP...

There is good advice and support. I think there are 2 clinics in U.K.?

Hope that helps - any questions PM me.

Best wishes CD

[CDreamer in reply to CDreamer]

Sorry about misspellings! Not ostrich - nostril