I am 68 and I have uncontrolled PAF. I had 2 episodes beginning 2015 where i had to be electrically cardioverted the first time and chemically cardioverted with ameriodone the second time Since then 100mg flecanaide daily with apixaban has prevented further attacks although i have ectopic beats and palpitations regularly which don't really bother me. After 2.5 years i had another attack 2 days ago and we called the ambulance immediately. My blood pressure was 250/130 but because i went to ICU so quickly my heart rate did not go above 160. They tried flecaide in an IV which did not work well and then cardioverted me with ameriodene which brought my heart rate down to 72 and blood pressure to very low. I actually blacked out in the toilet and fell on my head.
I also have Myalgic encelephmyolitis {ME} and went for hyperbaric oxygen treatment. I don't think that tiggered it but my activity levels for the past month has been much higher than ususal. Is there anything that can trigger an attack or not?
We are also booked for a cruise going from South Hampton to USA and will be 5 days on the ocean. I would like to go but is now scared of having an attack on the boat
The dr doubled my flecanaide to 200mg per day and i hope that will work. We decided to only go for ablation if the higher dose of medication does not work.
Do any one of you have uncontrolled PAF and how do you cope?
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Bettiehough
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Why not ask your GP for his medical advice as to whether you should travel in the way you wish?I He knows you best. I did this when I wanted to go to Istanbul a few years ago and he asked if I was going alone...I was not. Also, he said there is a good American hospital in Istanbul. So he considered other circumstances as well as the medical.
It depends what you mean by uncontrolled. If you mean that drugs do not stop AF from recurring then I think this would apply to many on this site..myself included.
Firstly I would ask your cardiologists permission to go ahead with this holiday. Secondly do make sure that you are fully covered insurance wise...particularly as you are prone to blackouts. Do not leave anything out of your declaration.
I've been on many cruises over the years since diagnosis including 7 day crossings to the West Indies. I have had episodes on-board but dealt with them myself (much to my GP s alarm).
While I don't think you should let AF rule your life you must exercise some caution if you are particularly unstable at the moment.
I cruised June - I have no problems travelling (currently in Spain) I just try to ignore it and get on with whatever it is we are doing, your mustn't let it take over your life.
I have had episodes in the most peculiar places, just have to sit it out and take your time. In the past I've had episodes on ski slopes, in yachts in the middle of Atlantic, on small boats whilst whale watching, on trains and boats and planes. Some weren't pleasant and a couple needed medical observation but cruising is a doddle as you will have medical staff on board. If it comes on - go rest - if that works for you - or gentle exercise if that helps.
Have good insurance, a good coping strategy for the anxiety and enjoy your cruise.
Where are you planning going?
PS - I did HBOT - I have Myasthenia, probable ME, POTS, Autonomic Dysfunction & a few others. It really helped - but I had to stop because the pressure kept bringing on episodes of AF so I now just take oxygen - 30mins every week which I find really helps. I've had PAF for over 10 years now, had 2 ablations, which lessened severity of episodes but I still get some - they seem to come in clutches - I will have 5-6 within a few weeks then nothing. I can't take any drugs as all heart drugs are contraindicated for Myasthenia so I just do my breathing & relaxation exercises - it's really important not to worry about these episodes as stress will make them worse.
I try not to go to A&E or call an ambulance as AF is not life threatening - but it DOES feel like it sometimes doesn't it? They won't treat me anyway so it's a waste of time but it sometimes triggers a crisis with my Mg which I do get concerned about, especially when it affects my breathing.
Go to the AFA website and learn all you can and you will find lots of friendly support from this forum.
Thank you for the advice My GP in the UK is a fool so i will contact insurance and cruise people to hear what facilities they have on board. What i mean with uncontrolled PAF is that i cannot stop it at home. The first time i had it i waited a long time to get the ambulance and my heart stopped. My heart rate was 225 by last measurement and they had to do emergency electrical cardio version and i was successfully resuscitated. The second time i was in SA. My daughter is a gp but she got me an ambulance immediately. My heart rate went very high again and it took about 18hours to be chemically cardioverted by drip with ameriodone for my heart to go back to normal. My fear is that i do seem to need medical intervention.
Thank you i will find out if they can do what's necessary on the cruise ship if the need arises. I am not a worrier but my hubby is and unfortunately his mother died of this before there were adequate medical care. I however would like to still do things that I enjoy in spite PAF and ME. Actually having ME has impacted more negatively on my life than PAF and i am an occasional wheelchair user.
Yes I had cardiac arrest in the ambulance in front of the house. My hubby saw the ECG flatlining and i was unconscious. The medic resuscitated me I woke up with the anxious face of the medic in front me. I did not realise what happened so this is why up to now my advice has been to call an ambulance when i start. Are there any one else in the same situation?
It seems to me now that with most people the episode just pass on its own. I don't have the guts to try that at this stage as on the 3 occasions i had PAF i needed medical intervention
Bettiehough ...how absolutely awful for you. My surgery always insist that I go to A&E and not hang around when I have an episode . I think that those who post on here and sit it out know by experience that they revert to sinus sooner or later. Certainly when paramedics see my rate approaching 240 + they dont hang about.
I'm wondering who you have managed to get insurance with with all this going on. I've been quoted circa 3k for a transatlantic crossing.
I have insurance through my bank which they loaded when all this started 2015 but it was a lot cheaper than if i had to get it from scratch. I will have to see what is going to happen now. Glad I am not the only one whose heart rate goes that high. It feels like gallping horses inside!
CDeamer the only thing that was different in my life was having HBOT. I did16 sessions HBOT in quick succession for ME. I am wondering now if I should continue and rather leave it.
I am 76 and PAF does not hinder me in any way it did until 4 yrs ago,Cardiologist prescribed Flecainide for me as PIP,Pill in Pocket.When an episode comes on I have to take 300mg all at once,within 40mins to 3/4 hrs.back in rhythm.She told me it can takes up to 8hrs to work if over this time get to A&E.By the way I have not had an episode for 2yrs.so this works very well for me.Any problems I have to get in touch direct with Cardiologst.You should get in touch with your Cardiologist,as GP's don't seem to know much about this problem. Good luck,keep well and enjoy your trip.let me know if this helps.
Hi Bettiehough - enjoy the cruise, make sure you take all your medication with you, sit back and let the world float by! I've been on several cruises both in Europe and North America, including fly-cruises and cruises from Southampton. Even with persistent AF I've fortunately managed to avoid having to see the ship's doctor, leaving that to travelling companions with kidney infections, swallowing fishbones and concussion from falling playing table tennis! Last year's cruise saw my husband and I share a table with 6 companions 4 of whom were diabetic and 3 had AF - apart from competing to see who had achieved the highest heartbeat, the highest (and lowest) blood pressure and the record for DC cardioversions (7) we were probably some of the youngest people on the cruise being in our 50's. Contemporary cruise ships have very good medical facilities but relax, enjoy the holiday, and when you get off the ship at the end of the cruise, maybe think to yourself "well, I'm sure there was a medical centre on board but I never saw it!" Enjoy.
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