i had to give up coffee, tea, alcohol (in any amount), walking alone (if it starts up i'll be stuck wherever im at, not being able to move for a while), shopping for longer than an hour, driving (almost completely), sitting in the heat for too long, any shock to the system (scare, ice cold water..or weather, etc), running outside with my kids, sex (9 out of 10 it sets me off and takes a long time to finish), ....basically, it's stripped the person that i am apart, bit by bit and it's taking me over. all while the doctor says i have sinus tach, not svt (wtf, doesnt SUPRAVENTRICULAR mean above the ventricles, and isnt the sinus node ABOVE the ventricles?!?! i mean its categorized as an svt...whatever.) and so he can't do an ep study because he cant cure st (WTF! i thought an ep study was to find the rhythm problem and THEN try and fix it if its fixable......?!?!?!?!), even though me and other doctors i've seen over the past few weeks have suspected avnrt thanks to my symptoms being different than st.
I can relate to what you're saying. My concerns were basically ignored throughout my teen years, my 20's, 30's and well into my 40s. My heart goes out to you because I understand exactly what you're going through. Especially how the SVT has taken over bit by bit. I too sometimes feel like only a shell of what I used to be remains. It's so hard not to be able to do all the little things that everybody else takes for granted. My biggest regret is that I didn't get a second opinion for so many years until the situation got so bad that I had no other choice. I wish I hadn't waited so long. I'm now 58 and looking back on all I've missed because of SVT......and because I didn't challenge my PCP sooner. Any possibility you can get another opinion from a different doctor?
oops....I meant to say EP or cardiologist, not doctor.
im scared to move from my current dr :( hes the first out of 6 or 7 heart dr's that actually believed me...im really scared.
do you take any medication? has the doctor suggested trying low dose beta blockers? I take a small dose of atenalol daily and once I got used to it my SVTs have subsided 90% and i can do some physical work now which I couldn't for 15 years. I resist taking drugs and have avoided this for years but I was silly and should have persisted and taken the atenalol. My life was a misery, ANY physical activity at all would trigger runs of SVT and irregular heartbeats - raising my arms above my head to change a light bulb, prune a bush in the yard, anything at all. Sex stopped years ago for me because of the fear and triggering of SVT's (my wife was glad anyway).
talk to the doctor some more. You're too young to give in to this. Best wishes
In answer to your question it has ruined and controlled every aspect of my life for over 15 years. Now I'm too old to pick it up again. Used to fish from the ocean beach, can't - cast the rod and BANG, there it starts, try to walk back up the hill from the beach, and can't, frightened to go out much in case it starts, can't work anymore because stress and fear of an attack brings one on, and so on and on BUT!!! THERE IS HOPE....after years of resistance I have been taking atenalol in adjusted doses for the past three years or so and it has helped enormously. 90% reduction in frequency of attacks and severity. Persist with your doctor and beta blockers or calcium channel blockers together with anti anxiety meds like low dose valium and you will find a formula that will help get your life back!! Talk to your doc. chin up.
Unfortunately, beta blockers have been nothing but problems for me, the side effects created more medical issues on top of what I already had. I have found a wonderful EP cardiologist who is performing an ablation for me on Wednesday and have high hopes for getting my life back.
I am glad to hear you are having better experiences with Atenolol than I did, though and I hope with the change in meds your life will improve.
I agree about the side affects, they are awful and sometimes I wonder if it's worth it.....good luck with the ablation; yoiu'll have plenty to do afterwards but sometime in the coming weeks please drop me a note if you get time telling me that you are FIXED!!
yes i have done drug therapy. nadolol for almost a year, it stopped after i upped my dosage 5 times, so friday he put me on zebeta and so far it works when it wants to. on and off... my body just doesnt handle any prescription drug like it should. even when i was younger and on bitrh control (i tried 3) i would stay feeling under the weather...my attitude is, if theres a chance it can be fixed, lets try. you know? but dr doesnt seem to be on the same page as me.
I've written here on several occasions how SVT became intetwined in my daily life for the last 54 years Although I refused to have it rule it, there were things I would avoid.
-I've never been on a cruise with my wife. I was afraid of an episode even though I've successfully every one that I've ever had.
-I wouldn't do overnight ocean fishing trips with my family who fish all of the time.
-My dad, my brother in law, and some friends sailed our sailboat to Bermuda. I never even remotely considered going, although I would have loved to.
- I never ever took allergy medicine or anything with antihistamines; guaranteed SVT episode
-Generally never ventured far from home becasue of it.
-Perhaps the one thing I'm most bitter about was my amateur speed skating carreer. I excelled at it, along with track cycling. But skating was my thing. I was nationally ranked at one time and was looking at participating in olympic trials. But leading up to the trials, SVT episodes in two of the events that I was favored in forced my withdrawal, and all chances were gone. That was a long time ago, but the one that hurts the most I think. I don't think my EP fully understood when I thanked him afterwards for changing my life. He smiled and nodded, but my life has been radically altered. Now I want to do the things I always dreamed of but never dare do. Although I still skate, it's only for coaching and enjoyment now. That facet of my life is forever lost.
I also suffer from SVT. There's a lot I have had to give up in order to deal with it.
-caffeine: I still drink it, but less often than before, in smaller amounts and not in the mornings. I miss my morning caffeine buzz so much! And when I do drink it, I have to make sure that there isn't another factor that could combine with it to set off an attack, for example I shouldn't have caffeine if I'm having a stressful day, because the combination of stress and caffeine could cause trouble. Technically I should avoid it altogether as some of my worst episodes have been set off by caffeine but I love it. :(
-sausage: weird one, I don't know ... but I've had sausage for dinner twice and had really bad palps after!
-any meal that doesn't have enough protein: somehow, large amounts of carbs with low protein aren't good. As long as I eat protein, I tend to be able to manage.
-sugar: large amounts of sugar tend to set problems off
Thankfully, I am able to work out and exercise. I usually am less likely to have an episode on days when I work out, as if my heart has excess beats that it will use on SVT if they aren't used on exercise. There are lots of other things I've given up though, mostly my peace of mind. Whenever I'm out anywhere, I'm constantly worried about having an attack. I take a cell phone with me all the time so I can call for help if I need it. I don't put myself into situations where I feel trapped, because if I have an episode I need to be able to escape it. Some places I feel trapped:
-hairstylists (especially unfortunate!)
-long lines (at supermarket etc.)
As I say, the thing that bothers me most is my loss of confidence and general wellness. SVT is so scary and I hate having episodes so much that I will do almost anything to avoid triggering them. It is very nice, though, to know I'm not alone. Thank you all, for answering this post.
I also had to give up some things when struggling with SVT.
Slowly I am getting them back bit by bit.
I was lucky that I only had a few big attacks before being diagnosed and only missed out on about a years worth of my life.
I really take my hat off to those of you that have suffered for years and years with this terrible terrible problem.
At first my attacks were random and years apart and I didn't even think about them as they always converted back in a few minutes.
Last year they started coming more frequently and eventually it was all the time. I would move and they would start, I would eat and there they were. Basically everything I did caused an attack. The very last attack I had before the ablation was on a Sunday morning reading the newspaper and eating breakfast... there it was BANG! and this time I couldn't convert it back. In a sense I was relieved that I ended up in the ER as they finally got it on tape. My doctor said it usually takes years to catch an attack so that made me smile.
I was a very active person until my SVT kept getting worse. I am self employed, active voluntary worker and sit on advisory boards for mental health and the Red Cross. That year before the ablation I was a recluse. Very difficult being a recluse when you are a chairwoman believe me!
Since the ablation 6 months ago I have started to rebuild my life and now take part in spinning and aerobic lessons on a regular basis. I do find some short SVT bursts are still happening but I am trying to catch them on a monitor.
I won't let SVT ruin my life anymore, it did enough damage to my life to last a lifetime. My business almost crashed as I wasn't allowed to drive and my customers are all over the region.
BUT being ill and a recluse forced me to re-evaluate my life, the SVT forced me to face my fears about dying. It forced me to live for today and enjoy whatever life we have left. I don't remember how many times laying in bed at night did I wish that it would be over, how many times I did pray (and I am not a believer at all) I hit rock bottom totally. Those were the dark dark days of SVT. But then when you are at the bottom emotionally, mentally and physically the only way to go is UP! It took me a while to get over the anxiety of SVT. The help of some pills really got me through. Right now I am drug free I don't take meds for anything anymore. I am building myself up through exercise, stress free living (trying to at least with the kids) and a total new career (going back to university to study)
We get only the one life and when we give in to SVT then we give in to our life. I and so many others learn this the hard way.
The ablation I had changed my life for the better in more ways than one :)
I was only concerned about dying a couple times, but once that passed my EP said, "Quit running (until after the ablation) or you'll end up in the ER again."
So, I missed out on:
caffeine (back on a 30g a day habit thank you)
My wife was always worried about my running. I do marathons, so the time on the road can be up to 3 hours.
I was always "looking over my shoulder" for the next attack.
I didn't train as hard as I wanted...
I miss my savings account and disposable income. (read: if you don't know what the "max out of pocket" is on your insurance plan... you will.)
i has svt for 5 to 6 years an im on beat blockers an idnt think they work an iv refussed avin a pacemarker cud any 1 help me i dnt no wot to do abwt it..
Everything in my life has been affected by PSVT. I've had PVCs and PACs for more than 20 years and now for the last coupla years the PSVT ( everyone on here has heard my rants about this ) I gave up all sorts of things like everyone else, the coffee, chocolate alcahol etc etc etc. But the biggest change has been the day to day fear. I recently moved into a new house and am living alone and live in fear every day of the next attack. The Inderal is doing ok but I haven't gotten the cash together yet to see an EP ( theres avery good one close by ) no insurance at this time. I own my own business and can't afford to buy insurance plans yet. Anyway I'm dealing with it day to day because I have no other choice-but I can tell you I HATE it.
Ask your cardio to refer you for an EP study with a possible ablation, you won't regret it.
couple of questions...
I'm trying to understand SVT a bit more - how can you die from it? I haven't read that before
SVT and PSVT are the same thing? does it start out as "infrequent' as PSVT then more attacks occur? - atrial stuff is all new to me.
I thought the only dangerous arrhythmia originated in the ventricles?
I was dx with Pac's and PSVT after my ablation but doctor's say not to worry about it like my pvc's and VT...
thanks for posting this; sorry for all the questions.
that's alot of info and reading about SVT/PSVT is an eye opener...after chatting with Is_something_wrong about holter monitors I'm wondering how many of my pvc's were really pac's or vt/svt...
is there a way to really tell the difference when you have all kinds of arrhythmia's if the doctors don't look at your holter monitors?
Hi...I definitely will drop you a note and let you know how it went. Looking forward to sharing my experiences and comparing notes with everyone.
Hi Tom, thanks so much for all your help and explaining things to me over the past few weeks. I look forward to chatting with you again later this week. P.S. I hope someday you and your wife get to go on that cruise.......the Caribbean is a beautiful place to visit in the spring.
Hi.....I hear ya about the caffeine......it did awful things to me, but I loved that energy kick.....haven't had a cup of real coffee in years. Can't even drink decaf anymore. I refuse to give up my chocolate though.....I treat myself to a few small squares every week. Don't dare go overboard though.
Interesting to hear that protein seems to lessen SVT issues. I will up my intake and see if it makes a difference. I can also relate to the "trapped" feeling. Everytime I go somewhere, the first thing I do is scout the room and find out where the nearest exit is. I also can't stand crowded elevators......if an elevator has too many people (more than a couple), I wait for the next one to come along. Thank goodness we all have one another to discuss these things with....not too many other people understand what a challenge this is.
As I read these posts, everyone's resiliance and spirit comes through, despite what we've all been through it's made us stronger people. Thank you for sharing your story with all of us. I am very glad to hear you're doing so well. Every success story here gives me hope, that I can do it too. Please keep me posted on how you're doing.
Thanks for the warning on the "max out of pocket" expenses. I did check it out a few weeks ago with the insurance company. :-)
I can relate to the day-to-day fear. I hadn't had it for a long time, until my SVT started acting up again recently. SVT has spoiled so many things in my life, but I will not let it defeat me. What I really hate more than anything else is the atenolol. I hope you are able to get some money together soon so you can see the EP. Please keep in touch and let me know how you're doing.