Update stargazer finally sees ep

Well i have FINALLY had an appointment with the electrophysiologist (dr who specializes in the electrical system of the heart) as opposed to the cardiologist (who specializes in the plumbing of the heart - blocked tubes and structural problems).

When i was in hospital with my svt attack, the cardiologist made the decision to put me on the 3 medications (bisoprolol, flecainide, apixaban) and wrote to the electrophysiologist at the other hospital telling him that i had svt and to set up an appointment to ablate. he told me that i would get word after christmas, probably first week of january. 

As some of you already know, i was extremely ill on the medications and could barely walk or even talk, but i put up with this until the first week in january when i started trying to talk with the ep (electrophysiologist) - by this time i had managed to research a lot and had a few red herrings on the way - my medical card said i had af, atrial fibrillation, and i researched the hell out of that, but svt is different from af. Af can often have a cause or trigger - stress, alcohol, obesity, dietary factors,exercise, tobacco, virus, and so on - so some people can identify and treat the trigger and 'manage' their condition. So my plan was no meds, no operation, eliminate the cause. Go natural.

Well svt is different, you are born with either an extra nerve or an extra pathway in the heart which can lie dormant and just be triggered - the trigger doesn't matter, the extra electrical bit is there full stop. So treatment is one of 3 things - meds, operation to isolate the extra electrical doodah, or do nothing. 

I wasn't given these options. The ep couldn't tell me why.

I had immediately joined this forum and when i asked if anyone had ever had just one attack of svt and then been given the ablation, out of hundreds?thousands? of forum members - no one. Naturally people who were having the attacks on a regular basis were more likely to take the ablation route - few people can tolerate the medication., and ablation has a higher success rate than af.

After finally getting my hospital notes i saw i had a pfo, a hole in the heart - so i thought this could be another factor i was' fast-tracked' through for the op - and that my heart rate was so high for so long and the drug that should stop the heart and put in into normal rhythm (adenosine) didn't work, and that my stroke risk was massively higher than the average person. (af plus hole in heart)

Anyway, short of putting a gun to the eps head (or even his secretary's, don't start me...) - i could not get to talk to him for love nor money, and eventually found out my op was scheduled for march. I had by this time began to reduce my medication. When i came off first drug i was rid of the vertigo, swollen joints, nausea and blurry vision. The second took longer (the cardiologist just said 'stop taking them') but by then i could walk, stay awake through the day and the severe tight painful bloating softened up, my eye whites weren't yellow any more. I was too afraid to alter the final drug as i believed it was for stroke prevention. I had no support or interest from any doctor. At all. No one even took my blood pressure, nothing.

So the appointment (which i was forced to cancel my op for as i wanted to discuss it all with him first, so i had to go onto a different waiting list to see him in clinic) finally came, - i am assuming it was anxiety which gave me a banging jaw ache/tooth pain with no cause and insomnia for 10 days - and i was blazing angry. After an hour's wait, he came for me - and no joke - his hands were visibly shaking, like really bad - i wasn't even looking for that - i know i joked about it before! I assumed he was stressed and probably needing food - and he had a student dr and a kidney doctor sitting in. Well, suffice to say he was blown away with my knowledge of my condition and said so twice ('i'm not patronizing you, i am really impressed with the research you have done, it makes my job a lot easier'). He agreed with my assessment of the tablets' side effects, congratulated me for coming off slowly and asked why i was on the third one. He was going to talk to the cardiologist that day and call me to stop taking them if the cardiologist didn't have a reason. He has just sent me a copy of the letter to my gp to stop them immediately.I might be wrong but i think that is the one that is making me appear menopausal with extreme mood swings, days in bed weeping,depression to the point of feeling suicidal etc. at that time of the month.(i hope so anyway!!)

So basically he said it is normal not to be told you have a hole in the heart (stops you worrying apparently - thanks guys), and he does not know why i was not - like everyone else - given an option to go on meds, have the op or do nothing. (was this the point where partner was tapping my leg cos my face was bright red - well, i did begin the consultation with telling him that i was upset and angry and though i would try to contain it, not to take it personally if it surfaced - and that i'd been thinking of him every day since november!) He then had to wrap it up as he had another patient and said to give it 4 months tablet-free and see how my heart behaved, palpitations and whatnot and he'd have more time in a friday clinic (thanks for the thursday appointment when i've been hassling to speak to you for months) and when i asked if i could email him he said no, he's too busy. I was pretty unhappy about that later - i still hadn't asked him things like - what do i do if i have another attack - not light questions - so i am going to email him.(do you think this would happen if you were paying??)

Very angry that i have been treated the way i have - it was really really stressful to research my condition in the state i was in and have the courage to come off heart medication - the suicidal thoughts, the crying bouts - 11 hours the worst one - yes, 11 hours, having a meltdown and leaving the school after 10 years of happy voluntary work, nearly split up with partner twice, carrying 2 stone and a total of 20 extra inches on my torso, no contact with friends, very rarely seeing any family, a thoroughly bloody miserable anxiety-ridden time with no alcohol or tobacco (well there was that one night - best night of the whole time haha)  Although he thinks it is likely i will have more attacks he can't say any more than that. If all goes well, i am just going to stay off meds and not get the op if possible. Of course, it may be that i have more attacks and they become frequent and i'll want the op, but i am hoping i am the exception to the rule!! i'll always have the condition, anything could trigger it at any time,  but i am not at serious stroke risk like i thought i was - at least according to this ep. I think i'd rather take my chances than suffer the meds or have my heart burned with all the risks that entails, stay off the fags, watch my diet, keep up yoga and pilates, try not to go too mad with the alcohol and stay calm! Right now i have a lot of de-tox symptoms, like a bad hangover, feel sick, going loo a lot, sinus-y etc - let's hope it's the tablets leaving and that i will never need them again. Thanks to all who helped and supported me (kodaska for flecainide advice) during a horrible time.

I need to calm down and accept what has happened and dump this anger. I am sure i will then feel happy about what is for me good news - what a relief just to see him finally!! I must say even though i am feeling unwell just now, i feel great not having to worry about all the side effects. I just pray all goes well now and if i do have any more attacks, i'll deal with that then. 

All that for not getting the options everyone else seemed to get, just 5 minutes talking to me would have made all the difference. They do say everything happens for a reason - i'll let you know if i figure out this one!! Wishing all a peaceful mind and a regular heartbeat!

ps - he commented to my gp how my research and knowledge about my condition and the different types of svt and heart anatomy and function in general aiding the consultation considerably, knowledge is power people, learn what you can!

8 Replies

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  • Hi my first post on the site . Very interesting listening to your experience in the system and sounds like things could have been managed much better for you . I'm currently waiting for an cardio electro physiologist appointment so keeping my fingers crossed that don't have to wait too long and feel better afterwards . 

    I've had 2 Svt episodes the first one last September I had just seen a cardiologist due to frequent ventricular ectopics and was awaiting a week long holster monitor and echo . before that happened I was just nodding off one night and woke with a gasp and my heart beating out of my chest . As I live alone at the moment I ended up staggering to my neighbours and ended up on my hands and knees in her hall trying to breathe properly . Ambulance came ...an hour later .. Saturday night an all . By that time felt better but they insisted on taking me in . Was admitted for the day given bisoprolol and sent home .

    Managed quite well with beta blocker it reduced ectopics but does make me feel breathless quite frequently. Unfortunately had another Svt episode few weeks ago again just after falling asleep ...it's a pretty horrendous experience especially when you're alone . So now been referred by doctor to Ecp and bisoprolol increased . Already cut out caffeine and scared to death of having a well deserved Chardonnay of a Saturday night . Glad I've found this site and know I'm not the only one and gain some knowledge from their stories . Will do even more googling now before my appointment as you suggested . Happy heartbeats to us all

  • Please private message me if you want - i can help you with info if you'd like to email. Being alone having an attack must be totally horrendous - after 4 days of palpitations my man was still convinced it was all in my mind until my heart rate was taken at a and e! Happy to share some stuff with you that is svt related, or anything else. Yes, this forum is such a help and comfort - saved me going mental many a time!!

  • What an unbelievably strong and medically intelligent woman you are! A hole in your heart and you were NOT TOLD??? When I read your post.. Being an American...I have access to pretty much any choice of EP that I feel comfortable with and while he doesn't always tell me everything... My heart issues have caused a great deal of anxieties for me too, please don't go it Alone with that (depression and cardiac problems go hand in hand! ) here we STILL have to search and be strong and look for doctors who will be decent... ESP to women, women are often judged to be nuts. You ARE EXCEPTIONAL! You are amazing and you have proven that you can beat the odds! Keep researching and sharing with us! I think just learning more about that hole they didn't tell you about would be worth it, and e-mail the doc once a week anyhow with all your findings and say "Have a nice Day!"  So what if you do that, you are a person and guess what... No one can keep you down! Love from USA!

  • Aw, thanks for your positivity Pattijay - is it true that in the states they have psychologists/counsellors on hand alongside the cardiac units?? have you read 'a change of heart' by claire sylvia? She like us all was begging for a dr bernie segal - check it out. pm me anytime! 

  • You bet stargazer61...I will check that book out for sure! I am surprised we have both not gone mental by now! I would love to PM you anytime and you can PM me anytime! I am on FB a lot...I am on FB support groups called "Heart Friends We are the ICD Support Group" since I have a CRT-D, and Confronting Congestive Heart Failure. Alot of us are just trying to not be paranoid! Thx for responding...I'm new to this site so I need to figure out about how to PM LOL!!!

  • Good luck. Keep us posted. My EP put in a loop recorder to monitor my heart. I take a beta blocker and baby aspirin daily to help with my arrhythmia. I have not had any palpitations since October 2015. He said I do not need an ablation.

  • good for you bob, long may it continue. i feel so much lighter inside, but all the weight i put on with the tablets is making all my joints ache terribly, so heavy on the outside and not oo well - like hangoverish, de-tox-y i think. The body is a marvellous machine so i hope it will right itself in time, and my heart so far seems ok, one or two wee palpitations, nothing worrying. all the best.

  • stargazer61 Thanks. Take care of yourself.

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