Anyone else dealing with NSVT

[Careful1]

I am no stranger to PVCS/PACS and very brief episodes of SVT but on April 15th my heart did something it’s never done before. I was driving to pick my son up and as soon I pulled up and hit the unlock button so he could hop in my heart started fluttering. It felt very similar to the way my PVCS feel but instead of a quick flutter it just wouldn’t stop and it took my breath away. It lasted for several seconds and scared the crap out of me. Now I had a loop recorder implanted 2 and a half years ago so I hit the button on the patient assistant to mark the ECG and drove to the hospital. There they did an EKG (which was normal as the episode had passed) and some blood work but other the a high white count (doctor said it was from the episode) was also normal. They told me to follow up with my cardiologist and sent me home.
On 4/31 I went in to see my EP to review the ECG strip from that night. He told me my heart was going over 200 beats per minute and that it appeared to be a 24 beat run of ventricular tachycardia that lasted for 8 seconds. Since it was under 30 seconds it’s classified as non sustained ventricular tachycardia but that really doesn’t offer me any comfort.

My heart has always been structurally normal but im 39 years old now with a family history of sudden death on my fathers side so my regular cardiologist thought it wise to do an updated work up. I had the echo last week which was mostly normal. It should mild mitral valve regurgitation, mild mitral valve prolapse, grade 1 diastolic dysfunction (this showed in 2017 as well) and some mild thickening. I have a stress test set up for June 1st and a cardiac MRI later this week.

I am dealing with some serious fear and anxiety. Fear that I will have another episode and fear that when it happens I will drop and not get back up. I need someone to talk to because I’m gonna lose my mind. I’m afraid to be alone, I’m afraid to go to the store, I’m afraid to be to far from a hospital. I mean I am afraid to get on 95 because if something happens it would take to long for 911 to get to me.

Is there anyone here that suffers from this particular heart arrhythmia or a different dangerous heart condition? How do you deal with the anxiety and fear?

[Carys]

I'm so so sorry you are scared, and you've been kind enough to respond on other peoples' threads whilst you are worrying yourself. You know I literally know nothing about this, but wondered if you could ask these types of questions from your cardiologist , or is there a heart related support site/helpline you could use in the US ? We have British Heart Foundation here, but don't know what your equivalent would be. I can totally understand why you are so scared, terrified, and its stopping you from living normally right now - this isn't regular HA, but anxiety based on a real condition and I think you do need some more support from the medics. You need to know what to do to stop this if it happens again, and if and when they would consider treatments but I suspect they are waiting to decide that based on the cardiac MRI.

[Careful1]

I'm so so sorry you are scared, and you've been kind enough to respond on other peoples' threads whilst you are worrying yourself. You know I literally know nothing about this, but wondered if you could ask these types of questions from your cardiologist , or is there a heart related support site/helpline you could use in the US ? We have British Heart Foundation here, but don't know what your equivalent would be. I can totally understand why you are so scared, terrified, and its stopping you from living normally right now - this isn't regular HA, but anxiety based on a real condition and I think you do need some more support from the medics. You need to know what to do to stop this if it happens again, and if and when they would consider treatments but I suspect they are waiting to decide that based on the cardiac MRI.

I don’t have any questions, I know all about the arrhythmia and a lot about the heart in general. I am just looking for someone to talk to that can relate because I’m extremely anxious and in many ways scared.
I have already spoken to my both my EP and regular cardiologist and I just need to get the testing done so my EP knows what direction to go in. There really isn’t anything you can do to stop this kind of arrhythmia, you gotta call 911 incase it doesn’t stop and just hold on for the ride. The only thing I can do at this point is pray. It’s very frustrating and nerve wrecking. Sometimes it’s helpful and comforting to be able to talk to someone that can relate. I feel very alone right now.

[Carys]

Ok, I hope someone comes who can relate and help you. As you do feel so alone, which is entirely understandable, I just thought that You would find lots of people who can relate on a cardiac forum, as we can on the British Heart Foundation. On here its possible nobody will have the condition - just thought it might help as an option .

[Careful1]

Ok, I hope someone comes who can relate and help you. As you do feel so alone, which is entirely understandable, I just thought that You would find lots of people who can relate on a cardiac forum, as we can on the British Heart Foundation. On here its possible nobody will have the condition - just thought it might help as an option .

I have posted there a few times, I have been a member there for a few years now. There just isn’t very many people that have ventricular arrhythmia’s on that forum. Maybe I will try to find a different heart forum, thanks for the idea 😊

[Carys]

Oh, thats not helpful is it, seems that finding people is tough for you - oh well, I'll keep bumping this back up for you with this message. lol

[Careful1]

Oh, thats not helpful is it, seems that finding people is tough for you - oh well, I'll keep bumping this back up for you with this message. lol

I appreciate that. It probably wasn’t a very good idea to post this here anyways. I thought perhaps in this area of the forum I would run into someone who has been through something similar to me but the more I think about it considering this is mostly an anxiety forum it’s not likely and really the last thing I would want to do is cause anyone more anxiety then they are already dealing with.

I saw you said you have been dealing with ectopics for many years? Possibly some brief runs of SVT? It’s annoying isn’t it? It boggles my mind that some people feel it when their hearts do crazy things but most don’t. It’s so unfortunate that we are the ones that do. I remember years ago an emergency room dr told me that there was Nooooooo way that I could feel all my PVCS and so out of pure curiosity since I was hooked up to monitors he told me to face away from the monitor and tell him each time I felt something. I did and he was shocked, he apologized to me so many times because originally he was mocking me telling me I was just anxious, I remember there was a hurricane getting ready to hit in a few hours and he was like are you really that anxious over this hurricane? I told him had he been in my body for even 5 minutes I bet he would be an anxious mess even though he was a doctor because though mostly always benign ectopics are scary. That’s just a fact. Even when you are used to them there are times when you get a bad run of them that bring you back to all the, can this really be normal? Am I gonna die? People that don’t deal with them have no idea just how frightening they can be.

[WorryRaptor]

Really sorry to hear you're going through this. I don't have any advice as such, as I have never had VT, but I wanted to reply so your post gets more attention from people who might be in the same position.

Is there a chance that your short run of VT was a one off? It may be that one rare moment that it happened, and because you had a device, you were able to catch it. From my scant knowledge on VT, there are some treatments to control it, like meds or a pacemaker if it ends up bad enough. I read that some chemical imbalances or medications can set it off if you're prone to it. It could be a combination that created the perfect storm and may never happen again.

I hope your MRI sheds some light on what's going on. It's perfectly acceptable to be anxious right now, as you're dealing with a very real thing! Sending you lots of support!

[Careful1]

Thank you for responding to my post 😃

I have managed to get my anxiety under control some what but I know once I have another episode it will rear it’s ugly head once again.

Good news is all my recent testing came back good, my MRI was perfect. It’s solely an electrical problem. My EP decided to treat with medication for now and continue monitoring. I’m coming up on 3 years with my loop recorder in September at which time he will remove it and implant a new one for another 3 years. So long as these episodes remain infrequent and under 30 seconds this will remain the plan. If they start happening more frequently or evolve into sustained VT I will need to have another EP study and possibly have an ICD placed but I’m hoping and praying it never happens.

It’s somewhat anxiety provoking to know I have this arrhythmia but knowing that my heart is healthy lessens that anxiety some.

[WorryRaptor]

So glad your MRI was all good and that your EP had a med plan in place and is keeping an eye on you. I can imagine it must be extremely unsettling for you, and I hope me bumping the post didn't cause any anxieties to raise their head again!