Fear of traveling

[12cupcakes]

I am afraid to travel because my PAF/SVT comes on unexpectedly with HR in 150’s or higher, dizziness,SOB, nausea, etc. my question is how do you deal with symptomatic PAF/SVT while traveling? On a plane, waiting to board plane, etc

[CDreamer]

Personally - I ignore it. I’ve had AF on Boats and plane and trains as well as car in the last 10 years.

I just take one step at a time. I have had 2 occasions when I have had to interrupt travel until I’ve felt better and one occasion when I had to get off a train and an ambulance was called but it wasn’t the AF that caused me concern - only everyone else!

For plane travel I ask for assistance - normally have to book - but this avoids having to stand in long queues and trek long distances - makes all the difference. You can also book that for train if you travel alone.

There is a phrase we use on another site which I try live by - I may have AF but it doesn’t have me.

Last week we travelled to London for the Chelsea Flower Show - glorious. This w/e off to Dublin for family party and planning a trip to Canada/Alaska next year.

You need to enjoy life - whilst you have one.

[12cupcakes in reply to CDreamer]

Thank you CDreamer. Love your phrase “ I may have Af but it doesn’t have me”. I just feel awful when Symptomatic PAF happens. I usually lay down and rest or sleep until it passes

[CDreamer in reply to 12cupcakes]

Me too - but I can do that when I’m travelling. I don’t drive too far myself these days so I can be passenger.

Getting over the fear is the worst part and once you’ve done it and nothing terrible happens - you’re away. Start small and gradually increase.

The trick is to keep calm and not worry and to have a plan B if you start to feel really terrible. When I was first diagnosed I didn’t want to travel but my then GP knew how much I did and gave me a stern talking to.

Best wishes

[Quilafizz in reply to CDreamer]

I LOVE your answer!!! Thank you, as I used to live for traveling and now I live in fear. I’m going to book a trip now. Thank you!!

[meadfoot]

It's a difficult one cupcakes. I find it's the svt which is the bigger deal for me by far than the af. Svt symptoms can be dreadful and overpowering. I am blue lighted to hospital when mine kicks in as I get horrendous chest pain requiring Intravenous morphine and almost passing out every few seconds only to come round and almost go unconscious again and again until converted with flecainide.

Makes travelling a hassle to say the least. So my EP has given me pill in the pocket flecainide to take if an episode kicks in and I find since having the drug I feel more confident and it controls my symptoms largely.

I have gone on cruises, flown to many and varied European destinations. Yes I am concerned about it but do it anyway when I can. It's not easy but stress makes things worse so I do the sensible things like, drink plenty of water, wear flight socks, do leg exercises on the plane to keep moving, get to the airport in plenty of time so no rushing around. I don't get too much sun and stay hydrated, no alcohol for me or any known triggers, get plenty of rest and don't push myself too hard.

I keep my trusty flecainide close to hand and always ensure I have sufficient meds and more for the holiday and some spare in case of delays. I keep meds in my hand luggage and a supply in my stowed luggage in case of missing luggage.

I also check out local hospitals before going so I know where one is and its rating. All belt and braces but with such dreadful symptoms I prefer to be forearmed. If it was just straightforward af I would be less vigilant but svt for me is the horrendous one when it strikes.

Make sure your travel insurance covers you for all eventualities. Then you have done all you can so go and enjoy your break away and relax. Life is for living not fearing, not easy I know. Be well. X

[12cupcakes in reply to meadfoot]

Thank you Meadfoot. I think my episodes are SVT with lots of ectopic instead of Afib. I too try not to exert myself because that is what brought the beast on before my ablation. But I always have the fear of it coming back and would hate to be traveling because I find laying down and resting helps relieve it and with traveling there may not be a place to relax. I will have to work on trying to ignore the symptoms maybe I need to start taking little trips and build up longer ones. Thank you for your advice

[MT51 in reply to meadfoot]

What's SVT?

[meadfoot in reply to MT51]

Svt is a tachycardia felt above the ventricles itvstandcfor supra ventricular tachycardia.

[MT51 in reply to meadfoot]

Thanks for explaining that.

[Hidden in reply to meadfoot]

I do admire your courage Meadfoot!! With all your symptoms you battle through regardless. Having just gone through a 15 hour episode of AF I am powerless to do anything while in its grip let alone travel etc!!😀

[Hidden in reply to Hidden]

Yes I am the same just about get to an ambulance.

[meadfoot in reply to Hidden]

I empathise Kineton, powerless is absolutely the right term. We were travelling to Exeter airport from Torquay on one occasion when svt and af struck, detoured to torbay hospital where I collapsed at reception, no flying that day soooo annoyed but more scared.

I am a devout coward in reality hence all the belt and braces I employ. Just bloody minded I guess and desperate to keep living life. Can't get travel ins currently as undergoing extensive tests for another unrelated condition so even more frustrated.

Hope life treats you better and your af can be controlled well. Have a good day. X

[Gain in reply to meadfoot]

What is “set” please?

[meadfoot in reply to Gain]

Do you mean svt. It stands for supra ventricular tachycardia the arrhythmia is coming from above (ie supra) the ventricles. Mine is extremely fast tacky always above 200 regular beats per minute and often a good bit faster than that.

[Melleray in reply to meadfoot]

Hi Meadfoot - I admire you courage, I am too scared of the SVT part of my problem to attempt to go too far from a hospital. Had one last Christmas, just after my family had left and lay on the kitchen floor trying to call an ambulance with a pulse of 250. Can I ask you, have you ever had ablation for the SVT - or has the EP suggested a pacemaker?

[meadfoot in reply to Melleray]

I so understand your symptoms Melleray. I can feel your experience and sympathise how you must have felt laying there and your reticence to go far from a hospital. I always know where the nearest hospital is wherever I go not because I am a hypochondriac but because as you know only too well when it strikes at the level it does then we need a plan in place.

My original EP was going to do an ablation and said pace and ablate may be necessary and I was put on a lengthy, almost a year waiting list for an ablation.

In the waiting time I researched top EPs and found one in central London, my gp referred me and honestly I have never looked back. Best things I have ever done. He took me in hospital there for an EP study and ruled out certain potential arrhythmias. He thought an ablation was not necessary for me at that point and categorically ruled out pace and ablate. He has kept me well since my first consultation three years ago. I see him every six months, go down again Monday next. I can ring him via his secretary if needed and he calls me back. I have a meds regime and an emergency meds regime if svt strikes. I can also email Kardia print outs to him and he comments back to me. I feel so cared for. He will tell me when and if an ablation is warranted and I trust him on that.

Yes I worry and always have my meds with me and have scares and hiccups but I never thought I would be able to function again and have been able to do so. Hold on in there you will gain confidence if you have a good medical team behind you. X

[Redders in reply to meadfoot]

What was the name of the EP in London, he sounds really helpful. Trying to see my EP in Plymouth is like winning the lottery

[BobD Volunteer]

We are all different with different levels of acceptance and coping. Personally I have ignored it. Once went down to Wales and changed an engine and gearbox in a rally car whilst in fast AF. 300 +miles driving with a day's work in the middle but yes I admit it was an effort. That was nine or ten years ago and I'm not sure I would do that these days but then I am lot older now.

Another good mantra is "AF may be in my life but it is not all of my life."

I remember an EP at HRC one year telling us he was in the middle of doing an ablation when HE went into AF but of course finished it OK. As I say though we are all different and I know that some people really can't deal with it. Does that make them failures? Who can judge??!!!! Who DARE!?

[12cupcakes in reply to BobD]

Thank you Bob. So true everyone had different experiences and coping skills. I like your mantra “AF may be in my life but it is not all of my life”. The advice I have received from you and many others have helped me tremendously. Thank you

[jeanjeannie50]

I guess most of us reduce our amount of holidays abroad, if the truth be told. My last trips were 2 x 10 day WW2 tours of Europe by coach and the strange thing is on both I felt quite well. Slept well too, which is unusual for me. Is it the different food I wonder.

I did a weeks holiday to Jersey in full AF (it wasn't nice). Before my AF I would holiday overseas around 3 times a year. I don't know if it's an age thing or an AF one, but I quite enjoy a nice hotel in this country now. BobD we used to stay at the Imperial in Barnstaple up to 5 times a year. Could only stay for 2-3 days at a time as we couldn't cope longer with all the eating.

I love countryside walks and would love to go out with rambling groups, but I'm afraid my tachycardia will kick off and I'd spoil the walk for everyone else. Now I just walk with friends.

Some people can carry on in fast AF, but mostly I can't and those that do - well all I can say is you can't get it that bad then, because for some of us it's totally disabling.

Bear that in mind Cupcakes and don't be pushed into doing anything you don't feel comfortable with, other forum members may not be affected by AF to the extent you are.

Jean

[12cupcakes in reply to jeanjeannie50]

Thanks Jean. Yes I am like you and when I am symptomatic ican’t function. As I learned from you and BobD, I listen to my body. I am going to try CDreamer’sadvice and start with small trips and build up to flying. Thank you, you always have great advice

[BobD Volunteer in reply to jeanjeannie50]

Very posh. All hotels are Brend owned round here anyway.(apart from Premier and Travel Lodge)

[jeanjeannie50 in reply to BobD]

Yes, I've visited two of their hotels in Cornwall too. I used to be able to get the most amazing deals, but there doesn't appear to be anything like that available now. Had my 60th birthday there and family stayed too. Oh the memories! Just love Barnstaple.

[BobD Volunteer in reply to jeanjeannie50]

They don't seem to do deals and think they are London Hotels I think from the prices these days. When family come down it is Premier Inn after the last visit at The Park.

[Hidden in reply to jeanjeannie50]

I get deals sent to me from Brends hotel group....have stayed with them many times in past . Worth phoning and asking what they have on offer. Am planning on Saunton Sands for Christmas.

Sandra

[jeanjeannie50 in reply to Hidden]

Hi Sandra, yes I always used to ring and ask for a last minute booking price. I've visited the Saunton Sands Hotel, but not stayed there. I thought it was a little bit isolated and to be honest I wasn't overly impressed with the place. It is one of their more expensive hotels though. BobD might be able to advise better.

My favourite will always be the The Imperial in Barnstaple, then second the Carlyon Bay - but food was a bit odd there. We ordered rum babas thinking it would be a trip down memory lane, but they were like a pastry texture, dry and horrible. Also our room was cold and we had to ask for an electric heater. It was a lovely hotel though and in a beautiful location. The Royal Duchy - well that's a no from me.

Jean

[Hidden in reply to jeanjeannie50]

I used to live in the area many years ago when my father was stationed at RAF Chivenor and The Saunton was always regarded as THE place to go. As a teenager sunbathing on the sands it looked impossibly glamourous to me.

Fast forward and I've stayed several times and loved it. Latterly the cuisine at dinner was a bit too nouvelle....had to remember to bring glasses 😁 Have also stayed at Imperial a few times and enjoyed it.

[BobD Volunteer in reply to Hidden]

I shall PM you Sandra. Libel laws apply. ha ha.

[Hidden in reply to BobD]

Well if you have inside information.......🙄

[Bshersey]

I traveled across the USA for business (from Boston to San Diego and back) 10 days after my afib ablation on Feb. 28. I was still very tired. I was still getting episodes of palpitations at that point and I had a 2-hour episode in the office in San Diego that I kept to myself. But I made it through OK. I think it all depends on what you are willing to deal with in terms of side effects and annoyances.

[12cupcakes in reply to Bshersey]

Thank you Bshrrsey. I guess I am just nervous nelly but you are impressive

[Petrified]

Like you Cupcakes I'm struggling. I'm finding it difficult to get back to my pre afib self. Usually very sociable and busy I'm avoiding going out and finding 'reasons' for not doing things. Should be getting ready for the yoga class I've been going to for years but don't feel up to it. Same with the keep fit classes and even meeting up with friends. Did go to the Canaries in March. I have always hated flying but that was ok. However for most of the holiday I was counting down the days till we went home - didn't tell my husband of course. I'm pretty new to this group and finding it very helpful. Main thing is that everyone is different and so are their symptoms and coping strategies. I'm sure it'll get easier. We'd plans for all sorts of things but until I get the medication v ablation sorted it's a no go. From reading posts by others on here I feel a bit of a wuss!!! In my past life I was very positive and strong but this has knocked the wind from my sails. I know I'll need to get on with things but had 4 admissions from A&E last month & it's shattered my confidence. Find Bob's posts very informative, positive and practical. Obviously knows his stuff. Good luck Cupcakes and apologies for the rambling!!!!

[meadfoot in reply to Petrified]

You aren't a wuss Petrified, believe me the symptoms can be horrendous and sap our confidence, been there many times. A bit like childbirth some have easy births others have horrendous ones and everything in between.

Being unlucky and having bad episodes doesn't make you a wuss it makes you unluckier than some who have an easier time. It's not a case of courage or guts it's a case of symptoms and believe me I empathise. Take heart, excuse the pun, you will get back on track and then you can build your confidence again.

[Petrified in reply to meadfoot]

Thank you 😁. Hadn't thought of the childbirth experience & you're sooo right!!! Keep well

[12cupcakes in reply to Petrified]

Thank you Petrified. You sound exactly like me. I slowly started with meeting with friends and trying to get back to my life before PAF. And I am going to start with CDreamer’s advice to start with little trips and build up to flying etc. I agree that Bob’s post are very informative Everyone on this forum is so supportive

[Tantaanna]

Hmnn Guess I haven’t traveled by plane for two years now- since I went to the YL convention in Salt Lake City and went into afib and I didn’t want to go to hospital so just hung in there and went to hospital when I got home. After that trip I decided that I need to not share a room or go with a group - just need to pace myself- think the trigger was definitely anxiety of crowds and I did have alcohol.

I want to go to Cuba with daughter and granddaughter (she is married to a Cuban- a family visit) and trying to put worry aside cuz there will not be the same Dr experience or so I think. Plan to go back to PIP if needed.

Can’t let the AFIB run my life-is easier said then done. I am going in tomorrow for my fourth cardio version since my ablation a month ago. I have been using deep breathing- tai chi , Pilates and yoga to help. Stopping to take time through out the day to do this, I Also listen to anxiety meditations and positive intention statements such as “my heart needs be to remain calm” or I will lower my heart rate. May sound dumb but with deep breathing and repeating these statements I lowered my heart rate. But only if I am focused and truly desirous of the outcome. ( I also use meditative oils (Frankincense) I take this to ER or any surgeries)

Good luck- might add that I try to accept the fact I have this and if need be I have to seek help if I cannot over come my fear - again all easier said than done.

[12cupcakes in reply to Tantaanna]

Thank you Tantanna. I certainly can relate. I want to visit my sister but it is a 3 hour flight and I never did well flying alone before and now I have PAF/SVT to worry about. Good luck with your trip to Cuba

[porthole1]

Hi 12cupcakes,im75 years old with SVT,take 7.5 bisopralol with a 2.5 pip...

I too have been really worried about traveling as I’ve missed a flight to America and missed a cruise ship because of my SVT. I’m told to dial 999 within 30 minutes of an episode,the ambulance staff are always great,I’m taken straight to Resus and given Adenosine injection and monitored for a few hours...

They usually try various ways to stop the episode first,one of them is to cough continuously. Now I’ve managed to stop the SVT by doing this 5 times now,. I’ve just been on a 9.5 hour flight to America,2weeks cruising in the Caribbean and 2weeks cruising back across the Atlantic... yes I had 2 episodes of SVT and began coughing asap and stopped them myself. Now I’m not so anxious about them ,this helps a great deal...

Good luck with coping with yours I hope this helps ...

[12cupcakes in reply to porthole1]

Thank you porthole1. I will trying coughing several times the next time. I am not sure when that will be. But when it happens I will let you know how worked. Thank you for the good advice

[porthole1]

Hi cupcake,be sure to cough really hard as if choking for as long as it takes to stop,good luck x

[12cupcakes in reply to porthole1]

Thank you