Struggling to cope with Contact Ectopi... - Arrhythmia Alliance

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Struggling to cope with Contact Ectopics and SVT

Thompson123 profile image
12 Replies

Hi Guys ,

I wondered if people could share there stories . I’m 36 iv had heart problems for 16 years now . Iv had two ablations one successful for AVNRT . Iv tried may meds I’m now on fleainide . I’m having another ablation and the same time also have radio frequency ablation for AF .

I’m just so down and fed up with this , no one understands how this is affecting my life just don’t get a daily struggle I have . No body I know have ever experienced a palpitations , flutters etc .... I really wouldn’t want this for the devil himself . I wish my family and friends would understand. It’s destroying my relationship.

I have 3 children which are my world . I just petrified Of being on my own with them Incase I go into SVT or faint . My husband works nights doesn’t help . I pray one of my children don’t wake up in the night . As I shot out of bed to see to them and my SVT starts 😢.

This condition has taken over my life , I have no confidence, self esteem.

I pray for a day without , constant heart palpitations, flutters and svts .

Sorry for the long post .

Hoping to talk to some that Understands

Many thanks Michelle .

12 Replies
maria40 profile image

I'm so sorry for your situation. I have SVT and do understand how frightening the episodes can be, especially as you have children dependent on you. My children are grown up now but I can imagine all too clearly how I would have felt had I had it when they were young. My fear now, as I live alone , is having a long episode in the night, which always seems more frightening. I wonder if there is a support group which you would be able to get to in your area. It can make such a difference talking to other who have the same condition.

Thompson123 profile image
Thompson123 in reply to maria40

Thank you Maria for writing to me and sharing your experience. I will look into a support group .

Fingers crossed this ablation helps me .

Your completely right about how fightering it id when it happens at night . I always think when should I get to a point when I need to call for help .

Living with this is hell . I hope your coping well . Best wishing x

You might want to post on the Atrial Fibrillation Association site on HU. Lot of advice there.

Thompson123 profile image
Thompson123 in reply to

Thank you I will look into it .

I had a failed ablation for SVT AVNRT in 2016. For about ten years doctors and ERs told me I was "anxious." I take flecainide and nadalol. I'm 49 and my episodes which are about 230bpm terrify me. I am considering a second ablation but at this point I don't believe I'll ever get passed the terror of an episode and not knowing if it will ever stop. It's true that no one understands how paralyzing this is for your life. I hope your next ablation works. How frequent are your episodes?

Thompson123 profile image
Thompson123 in reply to Ninetyninepercent

Hi thank you for writing to me .

Your completely right about how fighting and the fear that it will never stop can be .

Iv had episodes of about 250bpm . I’m not having as many of them now maybe once or twice a month it’s the ectopics and the flutters a lot in the day especially at night .

I’m so fed up with doctors brushing it off as just get on with it attitude.

I think it’s about Quality of life .

This condition takes over .

Thank you . I just hope Iv got the courage You go through with it as I’d rather give birth 🙈 .

How much flecainide do you take ?

Ninetyninepercent profile image
Ninetyninepercent in reply to Thompson123

I feel the medical industry doesn't have many real answers or interest in this type of arrhythmia.

I take 50mg.of flecainide 2x a day. I was prescribed 100mg 2x a day but was afraid of it. I've been taking it since May 2018. However, they thought nadalol would control it and it did not, so now I take both.

I am afraid of really traveling/going anywhere. One of my doctors said call ahead and find out where the ERs are. Which if your in traffic jam or on a plane or train wouldn't help much

Whatamug1 profile image

Hi, you're right, when they're that bad you're alone with it. After decades of constant varied ectopics - I was put on sertraline 200 mg. They can sometimes be there still, in the background (after chocolate lol), but they aren't totally all consuming and I have a new lese of life. Feel so sorry for you. Ask to be referred to an EP - (you may be suffering from ectopic burden, you may not). It's the 'electrics' of the heart that are doing this to you and understanding it is reassuring. My ectopics just had me in a constant sate of flight or flight and that was a chemical reaction to having so many of them. All the best ann

Whatamug1 profile image

lease / state sowy!!!

Thompson123 profile image
Thompson123 in reply to Whatamug1

Hi .

Thank you for you message .

So glad you have found a drug that helps that’s half the battle. Iv tried many meds

Iv due another ablation in a couple of month I just hope I go through with it as I’m paralysed with fear this is my third one .

Anxiety Definitely play a massive part of ectopics .

Thank you for your kind words .

All but best

Timsywhimsy profile image

I read your post and I can relate so much!!! How are you doing? I’ve had svt diagnosed for six weeks. On a beta blocker but I’m constantly afraid of it happening. I have a five year old and two year old my husband has been working from home a lot. They’re mad at his work and no one understands. I think I’ll get an ablation but I’m scared of that too and am scared it will return and that this horrible uncertainty is just my new life.

KRG13 profile image

Hi Michelle.. I can totally understand your state of mind. I am 35 years old myself and have Sinus node rentrant tachy and probably something with an atrial focus. I have 2 young kids who are the world to me and am always trying to shield them from my illness. Your self confidence is where mine is.. to make matters worse, I spent months with a label of inappropriate sinuc tachycardia because my first cardiologist wrote me off as psychosomatic. Thankfully, my other cardio and ep doc took their time and figured out what it really was.

Hang in there and make the most of the good days. Take care of your own food and sleep patterns, while you raise a family. Being kind to yourself makes the arrhythmia a lot more bearable. Take care.

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