Newbie looking to get my life back - AF Association

AF Association

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Newbie looking to get my life back


Hi all, I have been reading a lot of your posts looking for a way out of this mess. I went to the ER back in January when I felt my heart flopping around like a fish, couldn’t even count my pulse on my wrist! I was told I was having a SVT. The ER doctor had me do what I call a “party trick” where he gave me an empty plastic child like syringe and told me to take a deep breath in then try and blow the plunger out of the syringe. He counted to ten, quickly lowered the head of my bed and had two nurses at the same time throw my legs up into the air. Low and behold my heart rate went back to normal. I was sent home within an hour. The SVT came on as I was walking to my car after a very stressful situation at work. It was at that point laying in the ER convinced I was going to die that I made the decision to quit that stressful job that was causing so much stress. The SVT was just the climax of the physical symptoms I was enduring from the stress. Fast forward to March, I have time on my hands now so I was finally getting to things that had been put off like the attic mess. It had become the storage place for the whole family who doesn’t even live here anymore. Low and behold mid cleaning my heart started flopping again. I called husband home from work to the ER we go. They tried everything!! They were pumping everything but the kitchen sink in me and heart rate wouldn’t come down from 225. I was admitted and cardio inverted the next day, fortunately It worked. I was kept for three more days to monitor new meds, sotalol and xarelto. This med keeps my heart rate generally 60-70, resting around 58-59 but boy am I dizzy. Dr doesn’t want to change it as it has been “working” for the Afib, I also have relapsing MS and severe allergies. I’m never sure if it’s the meds making me dizzy or the other medical conditions as I have suffered dizziness prior to the meds. On a sadder note I have found that since my Afib diagnosis I have no life. I have suffered panic attacks for 35 years so I am constantly checking my heart rate just waiting for the inevitable. I’m afraid to go anywhere alone, I’m afraid to shower if husband isn’t home, I’m afraid to drive any further than my town... I live in a constant state of fear and this is no life. I’ve always been brutally independent and now I’m afraid of everything. I just want my life back, I don’t want to be afraid of everything... sorry so long winded, I just wanted to share my fear for anyone else that might be feeling the same or for anyone that felt this way and could offer some friendly advice. Thank you for listening 🦋

11 Replies

Hello Stevie and welcome :-) many of us have been in a similar situation although we may not share quite the same arrhythmia so can empathise with your feelings of anxiety.

When I had my first 'episode' of AF it passed quite quickly without any help from anyone.

The second was dreadful, breathless shaking from head to foot, filled with fear and convinced I was dying I decided the best place to do it was on crisp white lavender scented cotton sheets with the windows open and a view of the field not laying on a hospital trolly surrounded by chaos.

The episode lasted for many hours and much to to my surprise I survived.

I am not suggesting anyone should follow my example (particularly if they have chest pain and breathing is very difficult when they should get help by calling the emergency services ) but it demonstrated something to me , I can survive the episodes and anxiety pushes up my BP and heart rate and makes it a lot harder for my body to cope with them so I must try to conquer it .

So I have learnt for the sake of my heart I must try to keep calm and not get anxious in any situations. To help with this I use breathing exercises of the kind where you focus on something and breathe slowly and deeply. Another thing which helps is a 'distraction' I usually listen to the radio or music when I am feeling anxious which takes less effort than reading.

So take heart Stevie :-) I am sure as you absorb the fact you have an arrhythmia it will become less scary and you will learn to cope better with it.

Can totally empathise with your initial feelings of dread, impending doom and total restriction on it ruining your life and taking away your freedom.

Indeed there are many a time when I've felt the AF is a big black cloud hanging over me as I try to do all the stuff I used to enjoy: Camping, walking for 8 hours out and about, heavy lifting, sports, exertion, working full time.... drinking... caffeine!

You are not alone, I am sure you have seen posts from VonnieRuth who is having similar feelings and most of us are at some stage between you and the zen state of doodle68! Although reading your description of your episode I don't think anybody would brave staying home with it and it would be unwise to do so. I can only offer my sympathy as I know others are much better at suggesting calming exercises, but I have discovered that the first step is to have Worst Case Scenario plan. Decide what you would or could do in any situation, plan as much as practically possible for it, then do the breathing exercises or whatever. Best wishes 💕

I felt the same, and am still feeling the same somehow but at a less severe degree. I’ve tried all classes of antidepressant and anti-anxiety meds with no luck, the meds only made me felt even worse and isolated from the surrounding. I want to feel my own and gain confidence like the old me. This is a work in progress for me, but I got some relief by reading the book The Power of Now by Eckhard Tolle. It’s not about afib, but about how to get rid of the control of our negative mind.

Hi Stevie and welcome, as you have heard from others, this is a common reaction after your first episodes.

Your anxiety is your biggest enemy, the high HR and AF is more a symptom preventing you from enjoying your life. Your life may not ever be as you knew it, but you know what, it can be great.

The procedure you describe of blowing into an empty syringe and then lifting your legs into the air is called a vasovagal manoeuvre and my husband helps me do it for me and it really, really works if you then sit calmly and practise slow breathing techniques. See if you can see an anxiety coach who can teach you these very simple relaxation techniques - practise them every single day so they become second nature and then as soon as you feel your Heart speeding up. They may not cure AF - you will need to speak to your doctors about treatments - but you will be able to cope a whole lot better.

Very best wishes and may I suggest you go to the AFA website and read up on arrythmias and treatments.

Have you discussed ablation with your EP. I had one in November 2013 and after an initial 5 months of bumps and arrhythmias all settled down and so far no more af. May not be appropriate for you but needs consideration.

Dear Stevie, what an awful experience. I dont know if this will help but it is my experience. I got af out of nowhere at Christmas, loads of tests and no results so they put it down to lifestyle. Long story short a few months and a couple of episodes later I narrowed it down to gluten intolerence. 8 weeks off gluten now, no af, my hay fever has disappeared as have my skin allergies, I take a magnesium spray supplement and eat plenty of probiotics and fiber. It is worth thinking about as an explanation, you can't live in fear. As a guide some symptoms of gluten intolerence are bloated stomach, persistent belching, skin allergies that will not respond to medication, I had a rash for two years which disappeared in 2 weeks of quitting gluten, loose stools/diarrhea, explosive diarrhea within 20 minutes of eating, coating on your tongue, sore throats and hay fever symptoms. Wishing you well

Vidlufc in reply to Vidlufc

Sorry, forgot a very specific symptom, pins and needles in your hands face tongue and lips

I remember the first time I had a breakthrough episode. It was a couple of weeks after a heart attack, when I was just getting used to the idea that I had a little wire device planted in my heart and when would I have another heart attack? My partner was working out of town, it was almost dark and “bam” my heart went from 60 bpm to too fast to count. Was this another heart attack? I had never heard of afib. I took a nitro pill thinking that might help. Took another, took another and then called 911. Then called my partner and she headed for the hospital. I ended up getting back into rhythm on my own after many hours of being pumped with numerous drugs, and a short time having no pulse as my heart kind of rebooted.. a couple of months go by and I had been to the ER three times, becoming an old friend to the night shift. Episodes were always at night. Fast forward another month or so, after consultation with my cardiologist, who said if there was no chest pain, the rate was no more than 140-150, I had no shortness of breath, I could try just riding out the storm.. it was scary, but I did and I survived and ended the informal parties that occurred when 3 trucks of first responders and an ambulance rolled up my road and pulled into my driveway to be greeted by my friendly 129 lb. black lab and his equally friendly 85lb pit bull cross. Fast forward to today. I had an ablation 3 weeks ago to address my flutter and fibrillation. No major bumps in the road other than the normal indignities one faces in a hospital setting.

In 8 months, I have gone from fearfully terrified to recognizing that this condition is certainly no fun, but I will not let it control my life. I accept it and live around it. I have referred to it as a 500 lb gorilla that I’m forced to share a room with.

Being scared is not such a bad thing, but it’s better to face the fear and see how you can overcome it.

hi..just throwing this out there do some looking into cellphone radiation and afib...seen some surprising connections

Hi Stevie sorry you’re having such a rough time right now. Something you might add to the list of relaxation techniques to try is yoga. It was suggested for me and while I don’t suffer from Afib, I do have tachycardia, PVCs and a mitral valve insufficiency issue which all leaves me short of breath and feeling anxious quite often, and yoga does help. It can’t fix my heart but it does keep the resulting anxiety in check. Maybe it will help you find some relief as well. :)

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