celiav
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celiav, June 20,  2020  6:38pm EST

Difficult SVT

Hi everyone. Looking to see if anyone has a similar story/case/experience as me. I am 21 years old. I was Dx with SVT about 5 years ago. I was a high level athlete at the time so elected to try the medication route to control episodes. Unfortunately, I never found a medication that was effective for me (I tried 8 different ones). My heart got a lot worse and over the past two years, I have had 5 cardiac ablations.  I am still dealing with SVT right now despite everything that has been done to try to help me, which perplexes all the doctors. They're not sure if I still have AVNRT or if it's a new atrial tachycardia because my ECGs have characteristics of both. More ablations is not an option for me because it is extremely difficult to induce. They've tried every type of sedation and medication during procedure, and only once out of 5 ablations were they able to induce tachycardia, which was AVNRT. They've continued to ablate for AVNRT given that my ECGs still show same characteristics, but about 1 month after every ablation, the rhythm comes back. Anyone have something similar to me? Difficulty with meds or ablations? Non inducibility? Weird AVNRT or atrial tachycardia? 

A bit about my SVT: it stops and starts like a switch, rate ranges from 140s-260s, occur in short bursts multiple times a day (length has decreased but frequency increased after ablations), triggers include positional changes (bending over, turning on my right side, etc.; sometimes blunt force triggers it). I have passed out from it, ultimately got a concussion last semester at school. No longer a competitive athlete. Currently on flecainide 100mg twice a day. 

7 Replies
  • TessC
    TessC, June 21,  2020  7:15pm EST

    How I wish I could offer you some help, but my SVT experiences are not like yours and the cause of mine may be different from yours. I do not take meds (I was prescribed 2 different types but didn't continue them) and my infrequent episodes didn't seem to warrant an ablation in the cardiologist's opinion. I was basically told to live with it. The cardiac staff was not helpful on HOW to live with it, but I found Dr Sanjay Gupta's videos and a consultation with him was the best "medicine" for me.

    Your sistuation may call for something more than a body approach, but also include the mind and spirit - a holistic evaluation to find the right treatments to reduce the amount and severity of your SVTs.

    I'm sorry for what you have been through and continue to go through, but it is good that you continue to seek help and not give up.  Good luck and I hope someone with similar SVT experiences will come along and respond. Take good care!

  • Raindrop32
    Raindrop32, June 22,  2020  2:45am EST

    My heart goes out to you, @celiavarga. I also have a different problem than you do (I have Inappropriate sinus tachycardia, which is another type of SVT). I am also in the process of getting my own condition under control. Of course you've been through many medications, and the ablations. It sounds very very frustrating, and dedbilitating, too, to be hampered in your athletics and daily life. 

    The only other thing I can think of is, some points you have not mentioned in your post:

    How has your team consulted you about other lifestyle modifications that will enable you to dodge the worst of your symptoms? Maybe there is a missing piece of the puzzle somewhere, that can be ameliorated by changing the way you sleep, eat, exercise, manage stress and emotions, schedule your daily activities, etc. These sorts of changes, made through trial and error, can seem impossible, but you might just stumble upon something that actually helps. 

    For example, i recently have been experimenting with changing the way i dress to reduce symptoms (because temperature is one of my triggers). At times it feels like I have to reorganize my whole life around my malfunctioning heart, but we've got to work with what we've got, don't we? 

     

  • AHAASAKatie
    AHAASAKatie, June 22,  2020  8:44am EST

    Good morning, I wanted to say how sorry I am that you are having to manage this. And, that I am very glad you are here sharing with the community. What does your medical team plan to do next to try and help the situation? Thanks Katie

  • celiav
    celiav, June 23,  2020  9:37am EST

    @TessC Thank you. I'm glad to hear that you found some help with Dr Gupta. I hope your SVTs continue to remain in control for you. 

    @Raindrop32 Thanks for your response. Yes, I've tried so hard to figure out any lifestyle triggers for me, but I can't seem to pinpoint anything specific. I'm not a big caffeine drinker, I eat healthy, exercise, etc. The only consistency is that they trigger after I move the wrong way at the wrong time, and tend to trigger more easily when I am active (adrenaline induced). I had to stop rowing b/c my heart is worse when I compete in high intensity athletics and the medication already doesn't work well... that's how I got a concussion last Fall at school. Things are a bit better on the medicine now that I'm not rowing, but still get a decent amount of breakthroughs. I really don't know, it's frustrating. I hope you get some answers and relief soon from your IST. If you haven't already looked into it, I've heard Ivabridine is a helpful medication for IST. Maybe worth asking your doctor. 

    @AHAASAKatie They're sort of taking a wait and see approach right now. Since it's so hard to induce during the procedure, they said it isn't in my best interst to keep trying until technology somehow changes. I've already been on 8 different anti-arrhythmic meds so I'm pretty much out of options there too. My parents want to bring me to get another opinion, but I'm already with a very intelligent team of doctors so I'm not sure if it would be much help. I am also emotionally tired of being in hospitals / searching for answers and don't want to do more right now. I don't know what else to do though, which is why I thought posting here might bring someone with something similar. 

  • Raindrop32
    Raindrop32, June 24,  2020  3:33am EST

    That's the trouble with arrhythmia, isn't it? That they come and go, and it's so hard to figure out what how to stop the episodes from happening. I'm on metoprolol right now, and I've had some partial success taking a split dose twice a day, and timing my dosage so the larger portion is in the evening. My doctor did suggest ibravadine as the next thing to try. Right now, we're working on not pasing out at inopportune moments, and sleeping at night. 

    High vigorous activity and changes in position are also two of my main triggers, and as a longtime amateur ballet dancer, that definitely has a negative impact on my activity. Although we have differnet types of SVT, I can relate to straight-down faceplanting into the wood floor while attempting dance variations. I'm very sorry to hear sbout your concussion, that sounds scary. 

    There are lifestyle things nobody tells you about, but it's trial-and-error to find something, anything, that helps. Some other factors that nobody ever told me but I figured out effect me are:

    1. Sugar. Worse than cafffeine for me.

    2. Eating small meals spaced evenly instead of larger ones farther apart. 

    3. If you are a female, your menstrual cycle. Not that you can do much about this, but if you track your symptoms with your cycle, you might notice a pattern, and be able to adjust your activity and stuff to avoid stacking up your triggers 

    4. Also if you are a female: Not to make assumptions, this is just something that I know well, so I'm throwing it out there, but: female athlete triad. I was in figure skating and dance, and I might as well have FAT (I love how that's the acronym btw) tee shirts printed officially labelling myself. I don't know about the rowing "culture" but some stuff that I thought was totally healthy was really not and was not working for my body. And nobody flags this because if you have menstrual periods and don't look like a skeleton and can still exercise, you will fly under the radar, while still seriously messing yourself up. Actually, that can happen to males too, but the (somewhat misleading) sentinel sign of mentrual irregularity is not present, so males also get a free pass at the doctor's office, and nobody addresses this. 

    5. It's 3:30 am local time now. Did I mention sleep? Oh, yeah. I've noticed that my symptoms get better and worse dring different times of day, so I try to strategically schedule my most triggering activitiies when possible. 

  • AHAASAKatie
    AHAASAKatie, June 24,  2020  8:53am EST

    Ugh, this must be absolutely frustrating. However, it's good that you have a strong relationship with your medical team. That, to me is key. Best Katie

  • jack10
    jack10, June 25,  2020  11:20am EST

    I can very much relate to you. I'm a 25 year old female who began having arrthytmia episodes when I was a junior in college at 20yo. I've been an athlete my whole life including college athletics and live a healthy lifestyle. I did the same thing as you and was on about five different medications before my first ablation which they were unable to induce. About a year later I went in for my second which they used less sedation and they were able to isolate and ablate, but about a month later the arrhythmia returned. I remained on medications throughout the years and had my third ablation about a year after that with the same result. I've been on a bunch of different medications and recently just switched from Flecainide back to Cardizem. I feel very symptomatic during the episodes, but also am also prone to side effects from the medications- they think because of my age and activity level. I've had near syncopal episodes and the palpitations are very distracting. They've been able to ablate a-fib and SVT, but my ECGs still show SVT with PACs. They initially thought I would out grow it, but as time elapses, they think it will continue to affect me and hope it becomes more predictable so they can try to ablate it again. I completely understand your frustrations and what you are going through. As much as the condition stinks and I wouldn't wish it upon anyone, it is nice to find someone going through a similair situation who can relate, as it usually feels like we are alone, trying to navigate through this medical journey and achieve some relief. Please don't hesitate to reach out to me.

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