Svt/tachy.Scared and tired of feeling like this!!!

[Janmarie33]

Hello, I'm a 33 y/o female suffering from svt/atrial tachy/pvc's & pac's off and on for years. I was diagnosed with Avnrt and Ive had 3 ablations that were successfull on ablating svt/vtach/pvc's & pac's about six years ago. Since my last surgery I've experienced break throughs on my meds of pvc's/pac's and irregular beats here and there but I tolerated them well,kinda got so used to them happening id ignore them. In the last 6 months its been nothing but hell for me. Everyday I wake up feeling like someone is squeezing my heart(this has always been the feeling id get right before my arrythmias would start),so I feel like im constantly about to go into the rhythum without it present. Then in between the day I get these surge of addreneline episodes it feels like and I go into my very fast beats,up too 200. I feel like my heart is going to explode and very weak and faint. A total doom comes over me. I was put on what seems to be the 100th time, a 30 day monitor at home. Im always told from my doctor that im a rare case cause ive gone into so many different types of arrythmias, and I could try and do another ablation,but chances of having to get a pacemaker put in due to the ablation causing heart block were very high. And theres a chance after all that my problems could still be present. I've been on 120mgs of cardizem in am & 100mgs of Toprol at night for years now. Was put on the cardizem after last surgery from going into episodes of Afib. Since my problems all flared up again I live in total fear,and no one understands how terrible I feel. I don't just feel awful when having my arrythmias,I feel out of breath all the time,even cleaning my house takes to much out of me. I'm bedrest for the most part with dizzy spells,feeling weak and I always have a terrible feeling in my chest. Every little thing sets off my fast beats. This is no life to live and I'm tired of living in extreme fear and limited to living a normal healthy life. Its nice to read other peoples storys and know im not the only one suffering with this condition. Any suggestions or input would be greatly appreciated on what steps I should take in getting any type of relief with this condition

[madamebrianne]

Hello,

Please look into Postural Orthostatic Tachycardia Syndrome (POTS). It is a very unheard of nervous system disorder that prevents the body from being able to properly adjust to the pull of gravity. Therefore, symptoms arise, such as: rapid heart rate upon standing, low or high blood pressure, dizziness, fainting, fatigue, sweating, anxiety-like symptoms, headaches, shortness of breath, inability to exercise, digestion problems, etc. The symptoms are endless and vary person to person day to day. Very few doctors are familiar with this illness and often misdiagnose patients.

Please feel free to contact me if you have any questions.

Best wishes,
Brandi

[Janmarie33]

@Michellepetkus,the maneuvers never worked for me,ive tried them all! My episodes have a mind of there own and stop as they please. Any kind of bending,sitting,kneeling,overeating,turning from side to side while laying,getting upset,yelling and most of all changing my daily routine starts them up. If I usually wake up at 9am and I wake up at 11am instead my whole day will be a mess with these beats. Everything I do sets them off. When its bad is when my whole body feels sick and my heart and chest area have a horrific feeling inside that I cant even explain. Everyday I feel like my heart cant take much more and what time will I have it happen where it will finally be my last. I made an apt with a new doctor thats in the same practice as my doctor thats done my other ablations on thursday. This doctor specializes in ablating,avnrt and tachacardia rythums. So I have my hopes up. Its the best hospital in my area which is unniversity of penn in philadelphia. His name is Dr.Lin

[MichelleP_3811]

I know with me right after my ablation my pacs and pvcs were going nuts.  It has taken pretty much a year for them to calm down fully the issue being the pvcs and pacs are aggravated by the svt episodes but then in and of themselves can cause an svt episode.  They would likely calm down for you as well if you could get your avnrt fixed.  It however does not sound like they have been able to be successful with it if you still have it. I had one ablation and it has not been back since.  As frustrating as this is I have heard that younger people can have a higher incidence of the muscle fibers growing back.  I would say do your best to stave off episodes by keep your stress level down as much as possible and getting the episodes to stop as soon as possible as well.  Really try to find a vagal maneuvers that helps you to get the episodes to stop as soon as possible.  This will minimize the stress on the heart. Try doing one of the following and see if it helps.

    Gagging.
    Holding your breath and bearing down (Valsalva maneuver).
    Immersing your face in ice-cold water (diving reflex).
    Coughing.

Then I would say try to revisit the situation when you are in your 40s and less likely to have the fiber grow back.  I am not sure that is what is happening in your case but the alternative of burning out the avnode to rid yourself of the secondary pathway is a bit of a tough sell considering you would be on a pacemaker the rest of your life.  Though if you can't stay out of tachycardia for long then it might be something to consider.  Again, my heart goes out to you.  Just do the best you can to relax as much as possible when an episode comes on and it won't feel near as bad.  Breath in and relax and try the vagal maneuvers to get it to stop as quickly as possible.  I think if you can feel like you have a little bit of control over the svt it will make all the other issues with the ectopics less frightening.  And don't loose hope.  Everyday they are coming up with new advances in medicine I am sure someone will figure out how to ablate an accessory pathway that is in a really tough spot to ablate.  Take care and I am always here if you need to talk.

[Janmarie33]

Hello Michelle, yes the scar tissue is an issue,is to why also im hesitant on doing another ablation. Yes I still have the avnrt,thats what they say stems off all these issues. I dont suffer from the afib, I went into it one time a year after my last surgery and it took 11 hours for them to get me out of it with I.v cardizem. Since that episode I take it daily and have been fine with that. They documented I had gone into afib during my surgery,but so no real concern so they left that alone. It seens to ne everytime they go in I come out of it with something new. Its extremely frustrating! They have no answers as to why that happens and can never explain to me why I suffer from all this. Last apt I had with my doctor he said im a very difficult case and that theres not much that can be done for me. I could just try another ablation,but he thinks im at high risk for heart block and told me I should try to deal with my problems with meds for now. I just leave the office crying my eyes up feeling hopeless that I wont ever feel normal again and no one can help me,its very overwelming. My anxiety deffenitely has spiked to its highest because I live in fear,but I try to explain to my doctor,i have no issues with anxiety when im feeling good,its only an issue when my heart is going nuts and thats a normal reaction for anyone that feels there heart going out of control. I keep trying to think positive that one day there will be a cure for all of this for all of us sufferers. Thx again!

[Janmarie33]

Thanks for your response! I cant do any type of exercise, it just jump starts my beats. If I change my daily routine in anyway I will suffer in return. I tried doing simple walks,but this only left me feeling worse. Im sorry you feel what you feel and im happy you get some relief from the exercise,wish I could say the same.

[MichelleP_3811]

I am so sorry to hear about your troubles.  I also had avnrt and still have pacs and pvcs but I have not had any other issues like you have.  3 ablations is a lot.  Each time they do an ablation they create scar tissue in the heart and the scar tissue itself can create problems.  The hope is that it corrects the main issue but sometimes it can be like chasing your tail so I can see the hesitancy to try and fix the issues.  I am not saying that is what happened to you.  There are cases with people who are born with multiple svt issues but I understand the hesitancy of your EPs to do further ablations if there is already a lot of scar tissue from your other 3 ablations.  What is your main issue now, Afib or do you still have some avnrt?  Have you had an afib ablation?  The only thing with afib is it is a completely different animal from issues with the wall.  Where avnrt is an issue with an extra muscle fiber I believe afib is more related to a pulmonary vein and would be a different type of ablation.  I believe that atrial tachycardia is of a similar nature to afib but not completely sure on that.  I wouldn't recommend trying to ablate any more pacs or pvcs due to excessive scar tissue causing more problems than good unless you are still falling into vtach but I might consider an ablation for the afib or the atrial tachycardia if that is a possibility though your doctors do seem very cautious about working on you anymore which it is also important to follow their advice as well.  It would be something to seriously consider knowing where they ablated before in comparison to where they believe they would have to ablate now and how that would effect how your electrical signal is able to travel.  Have you tried different types of meds to see what works best to control your arrhythmias?  I actually agree with the previous poster about exercise.  I know that it is difficult for someone with afib to exercise and you might have been told not to but if you can as with the other poster before I took up cardio my episodes of avnrt were debilitating but after I could almost function normally even with a beat in the 230s.  I had to sit down but I tolerated them pretty well otherwise.  My other suggestion is to start coughing the moment you sense the signal in your heart is going astray.  I feel that myself when my pacs and pvcs are starting to go off and the coughing can sometimes jar the signal loose.  As well as maybe even try jumping up and down a bit as well and maybe also try the old stand by trick of holding your breath and bearing down.  The point being to try and disrupt the signal from the wrong path.  If haven't had much success with the vasovagal maneuvers I might suggest to keep trying it in hopes that you are able to find success with it at some point because I am sure if you are able to head off the svt episodes as soon as they start it would help you feel better.  Finally I would try to make sure you breath as steady as possible especially when you are exerting yourself.  It really seems to me that I get my pvcs and pacs going when my breathing gets inconsistent whether from stress, adrenaline from a hectic life or simply exerting myself and even from overeating.  I would assume you avoid caffeine but also watch your sugars and carbohydrates if you don't already.  Well I am sure I am not telling you anything you don't already know having been through as much as you have but do know that my heart goes out to you.  I do hope that you can find some relief from all this at some point.  Hopefully someone with afib can jump on and give some advice or even just moral support as well.  Hang in there and stay strong.  I send prayers your way.  Take care.  

[updownleftright]

I also deal with Inappropriate sinus tachycardia, and my heart rate is elevated for the most part of the say as well. Not as bad as you from the sounds of it, but I completely sympathize with you. My only recommendation for you is to check with your Cardiologist if exercise is alright. If he okay's you to start exercising then I would recommend you take advantage of when you do feel alright and do a little on a stationary bike, or go for light walks around you neighborhood. Start really slow at first and go from there. I know it sounds like terrible advice and like it wont help much, but for me it's helped a great deal. while I still get the fast heart rate the actual sensations I get when they occur don't seem as severe which is what's most important since if you feel better that's what counts.
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