Life with SVT any advice?
Posted , 4 users are following.
Hi everyone, I am a 22 college student that was just recently "properly" diagnosed with SVT. I've had these heart palpitations since I was 11 years old and at first I thought it was because of puberty and my heart was growing but then later doctors told me I have "severe anxiety". A while back I went to the ER and they caught one of my episodes and my heart was racing at 170bps lying down. I've been offered ablation last year but declined because I read online that although 99% of people are fine afterwards there is a 1% chance that something can go very very very wrong and I'll be a drag on my family forever. My college friends are working 60 hour weeks in investment banking and some are working hard pursuing a career they are passionate about and I'm bogged down my this fricking heart problem. I've tried for a long time to not let it impact my decision making but this is impossible to do anymore.
I get SVT about once or twice a month and I can usually control it by lying down and putting my legs up but sometimes I need to go to the ER for adenosine. The thought of it happening when I'm working or doing something important really freaks me out. Last year when I was interning, SVT happened many times and there was no place to lie down in the office and I didn't want to startle my manager so I literally went downstairs and walked to the nearby dog park and did my vagal maneuver on the grass where the dogs go to pee and poo. Whenever I'm working and SVT comes on, I lie and say I have low blood sugar because I'm afarid I might get fired if the manager knows I have a heart condition.
I feel like I'm always performing less than full potential and I really want to do more but when I wake up in the morning I'm short of breath and feel dizzy, I can never sleep late cause this increases my changes of SVT the next day, I can't do anything stimulating, I can't even sit too long or else when I stand up my SVT will start. I can't pick things off the floor because the act of bending over may start SVT. I can't eat anything spicy or has alcohal/caffine. I can't get angry or mad because this triggers SVT. This one time I was having SVT on the bus and an elderly lady came on and asked for my seat and I said sorry, I'm not feeling very well and she gave me this look as if I was disgusting....
How do you guys handle this? Are there lifestyle changes that help? Did anyone have children with SVT? How are you guys doing?
0 likes, 13 replies
Lolasmom susan9902219
Posted
Hi Susan
Having the struggle with SVT, I understand your pain.
Now I am a lot older than you, and only started this about 5 years ago. But I do understand your fears. I think the first thing is to be able not to fear this episodes. In the beginning I was a mess when they started, but somehow I have learned not to panic. I actually now get really p****d of. I immediately get to my maneuvers and getter done.
I have several things |I try until something works. My episodes last from 5 minutes and up to over 6 hours.
The quicker I start to stop it, the faster I can get it to stop.
My episodes are far more frequent than your though Sometimes daily and sometimes 2x a day.
Do you know what type of svt you have?
I have gone 3x for an attempted ablation but never ablated..
Right now I am on a calcium channel blocker but does nothing.
I hope someone with a similar experience can chime in and help you
susan9902219 Lolasmom
Posted
Hi Lola, thanks for taking the time to write back 😃 The doctor said he wasn't 100% sure until he does the EP study but has a inkling that it is AVNRT. I heard that was the most common one and most people have this type. I found that if I have a good routine and exercise everyday, the SVT is much easier to control and lying down while holding up legs up work almost 98% to convert out of SVT. However even when im not in SVT, my heart still beats kinda fast and i am short of breath doing normal things like hiking or climbing the stairs. The doctor put my on Metropolol and I took it for about a week and then stopped because it kind of made me feel droggy I did not want my body to be dependent on it. I have tried magnesium and coconut water but I really can't tell if it's making a difference.
Do you mean that you had ablation 3 times and it didn't work?
Lolasmom susan9902219
Posted
I had gone 3X for attempted ablation.
The first time, he could not trigger me.
The second time, he did trigger me, but through the study, he found out that |I did not have AVNRT as he previously thought through an ekg.
The study showed I had AT. This is far less common.
Because the procedure for AT requires a 3D mapping machine and it was not set up that day, I had to go back
The third attempt was a nightmare right from the beginning.
Prior to going in the study room, They attempted 5x to insert a urinary catheter. And then 7x trying to insert an arterior line into my wristI have never felt pain from that ever before in my life. By the time I was taking into the EP study room, I was a mess.
Then the study started. For some reason my bp went to 250/110 They gave me something to bring it down but did not work. So they then gave me nitro glycerin. That brought my bp down to 80/40 Then they gave me something to raise it.
I have never felt so awful. He then told me I was stable and would proceed. He turned around to walk back to the computer room. I then called out to him and told him that the party was over. He looked at me like I had 3 heads.
All I wanted to do was get unhooked and get out of that room.
It was just the worst day of my life. So here \I am suffering with so many episodes and the calcium channerl blocker does absolutely nothing. I actually get more episodes with it.
I often wonder if |I had left him continue, maybe It could have been resolved. .Who knows!!!!
susan9902219 Lolasmom
Posted
Oh man that sounds awful! May I ask which country you are located in? It's quite debatable what the result would be if you let the doctor continue because it seems like a series of bad events leading up to the ablation. The fact that it took so many attempts to insert things may mean that even if they did get to your heart it may cause more damage than good and you never know what may have happened because unlike other surgery it is heart surgery and any wrong step from a doctor/nurse may de detrimental. But then again as you mentioned what if it would have worked and everything got fixed. Tough decision to make... that's why I'm so hesitant about ablation as well. I read that some scientist are doing research on a nasal spray that can help SVT suffers stop an attack within 5 minutes and that may be on the market soon. Fingers crossed we can benefit from it.
Lolasmom susan9902219
Posted
I am in Canada.
Yes the study. I am very aware of this. Studies are being done in Canada and the U.S. Toronto had a centre for this, so I contacted them. The study is for certain types of SVT. It is being studied for types like AVNRT , AVRT. Unfortunately not AT. I was so disappointed
I was never really concerned about having the catheter done 3X. They always used my right leg. There's always my left leg, and they also use a spot up at the collarbone.
susan9902219 Lolasmom
Posted
I'm also located in Toronto Canada, I'm a bit skeptical about the healthcare system in Canada. I went to Toronto General, Sick Kids, and Mount Sinai and they couldn't find anything wrong with me for over 10 years while also referring me to heart specialists multiple times. The walk in clinics always need to queue for more than an hour and by the time they get to me it would already convert back. I'm thinking of maybe going abroad to get an ablation even though the costs out of pocket I just really want this problem to get fixed so I get on with my life. The good thing is that Toronto has good weather (4 seasons) compared to the rest of the world and it seems like cooler air lessens SVT for me. I was in Hong Kong last year and man being in SVT while also being 35degrees is the worst feeling ever.
Lolasmom susan9902219
Posted
Have you ever considered having a monitor
I have had the 3 day one a few times. Next month I am having a 15 day one.
I dont' really need anything caught as mine was confirmed by firstly ekg and then when I had one of my studies done.
One time I had the e day monitor on, and it caught a 6 hours episode.
You do know that an ablation is not surgery. It is a procedure
Lolasmom susan9902219
Posted
Hi Susan
Having the struggle with SVT, I understand your pain.
Now I am a lot older than you, and only started this about 5 years ago. But I do understand your fears. I think the first thing is to be able not to fear this episodes. In the beginning I was a mess when they started, but somehow I have learned not to panic. I actually now get really p****d of. I immediately get to my maneuvers and getter done.
I have several things |I try until something works. My episodes last from 5 minutes and up to over 6 hours.
The quicker I start to stop it, the faster I can get it to stop.
My episodes are far more frequent than your though Sometimes daily and sometimes 2x a day.
Do you know what type of svt you have?
I have gone 3x for an attempted ablation but never ablated..
Right now I am on a calcium channel blocker but does nothing.
I hope someone with a similar experience can chime in and help you
s22122 susan9902219
Edited
I have had SVT my entire life (I am now 30), and I understand your concerns and feel that we have similar triggers. Even though the condition can be annoying at times and my episodes have become more frequent, I have not let it control my life. I have had episodes that have lasted several hours (such as while hiking), but I have been reassured that the condition is benign. When there is no place to lie down flat, I have found that holding my breath will often work to stop an episode. Ice (or anything frozen) on the face also helps. I honestly have never gone to the ER for treatment since I know the episode will eventually stop one way or another. I was recently prescribed a calcium channel blocker as needed that's supposed to work in about 30 minutes to stop an episode, so perhaps that is something you can look into.
susan9902219 s22122
Posted
Hi, thanks for your reply! I will try out the ice trick next time. I searched it up and it seems like putting on your face or directly above your heart can convert. I think it will be much easier than ALWAYS having to find a space to lie down to convert back. I'm just wondering how you deal with SVT when you're outside doing activities such as hiking? Do you know if continuing to do my tasks while in SVT is dangerous or should I stop immediately? I keep getting told SVT is not dangerous but when heart rate is near 200bps I always feel like there is a limit of how fast your heart can go before something goes wrong.
s22122 susan9902219
Posted
I haven't used the ice trick in a long time, but it was my go-to to stop episodes when I was younger. Hope it works for you!
I know this may not be the wisest thing to do, but I've always just continued whatever activity I was doing and would deal with the episode after if it continued to persist. I usually don't feel many symptoms other than the fast HR, so I had no problem continuing with the activity. I recently saw an EP for the first time, and while he personally suggested getting help if an episode lasts longer than 30-60 minutes, he also used the analogy of a runner running a marathon - a runner's heart will beat fast for an extended period of time during that marathon, and the heart is able to recover (assuming there are no other underlying heart conditions). Have you had an echo and/or stress test?
susan9902219 s22122
Posted
Yep, I had 3 echo's from different hospitals and a stress test and no abnormality was found. I guess that's a positive but I was getting a bunch of PVCs whenever I get stressed and this feeling of constant flip flop in the heart every couple of minutes made me think I had structural issues as well. I've started getting back in the gym after the covid lockdown and it seems that my symptoms have lessened and I feel more in control of my heartbeat.
ciso16817 susan9902219
Edited
Hi Susan!
I am 30 and lived with SVT my whole life and can relate to your situation, I also used to get a lot of "this is anxiety" comments from doctors before I could catch an episode and get a diagnostic. My best way to deal with SVT is identifying situations which would cause me episodes and tried to avoid them which included: drinking coffee or energy drinks, alcohol, sudden temperature change, anything that would upset my stomach, bending forward, being dehydrated, stress/strong emotions, being tired. This is easier said than done, and even by being careful I would still get episodes, about 3 per month, I could have multiples in a day on a bad day.
I never went to ER, always made them stop by myself, the episode could last from 2mn to 30mn. I also found that the faster I can start maneuvers to stop it the shorter the crisis would be, finding a place to lay down is not always possible, what I do instead is go to the bathroom and adopt a sort of "balasana" yoga position, I try to put my body weight forward so it increases a bit the blood pressure on the chest/neck/head part of my body, then I block my breath, wait a bit, then release slowly. Repeat a couple of times and this usually gets rid of it. If I cannot go to the bathroom then I try changing position from standing up to seating down, and do breathing exercises, I also sometimes try drinking a glass of cold water. I try to stay calm, remind myself that these crisis are not life threatening and that they will go away. I rarely tell to people around me that I am having a crisis because they freak out and this just adds stress.
I never took medication nor did I want to be on medication for my whole life. I eventually got tired of this, I was living in fear of crisis and starting avoiding doing certain activities because of it,I also thought that if I get pregnant I could have more crisis and really did not want that, this had taken such a hold on my life I decided to go for an ablation. It looks like catheter ablation is so good at treating SVT that it is becoming the first treatment for it, before medications. I though, yes it is scary because it is my heart, but I am healthy and I want to live a normal life, I read testimonies, studies and looked at the data from my hospital, I built up confidence that all was going to be ok and that I would be in the hands of a good team who would not take unnecessary risks. I did the procedure a month ago, and the week before I was absolutely petrified, but the procedure was very smooth, no pain, they triggered the svt and saw I had AVRNT, ablated it, the whole thing lasted 1h30 you don t see the time pass, it is a bit uncomfortable to have the doctors trigger all kind of weird rhythms while you are awake but they know what they are doing. When they could not trigger any svt anymore I was sent back to recovery room and I was sent home in the same day. Never felt any pain, the wholes they insert the catheter in are very small and heal fast, I had a bit of discomfort in the chest for a couple of days which is normal, had quite a lot of ectobic beats (PVCs) for a week and a half, which is because the heart is healing, this diminished over time and I don t have anymore now, I returned to my normal activities. Most importantly, no more crisis since the ablation! These ectopic beats would have triggered so many crisis in normal time but nothing, I do feel like a crisis is about to start sometimes but nothing comes of it, the cardiologist I would experience this for a few months and it would go away completely. It looks like the ablation was successful, I am glad I did the ablation and can't wait to live a normal life.