EP study scared...

[piggy001]

Hi all,

I'm having a hell of a time with my little heart lately. It all started when one night I had a very fast heart rate and chest pain and I passed out temporarily. I was taken to the hospital and because of my young age they immediately started talking about anxiety and stress until my troponin came back positive. While I was laying in the bed waiting to be put on telemetry and back into the resus bay I quickly said to my husband I'm dizzy and I could feel my heart going fast and start pounding. He called the nurse and came in she looked at the oxymeter machine and felt my purse said wow your heart is beating so fast and ran out of the room. I She came back with another nurse and wheeled me into resus. They hooked me up to the heart monitor and my pulse showed 180. They gave me something and it dropped to a steady 130. They gave me morphine because of the chest pain (at this time they thought I may be having an MI) and a few seconds after the morphine my heart rate shot up again to 180. I kept asking them why my heart was beating so fast and if I was in sinus rhythm? I never did get a reply all I remember was feeling really stoned and being poked and prodded. Anyway it was concluded I was not having an MI after a day but i have a possible arrhythmia.

Right! Fast forward a few more attacks of tachycardia and a stress echo, echocardiogram and several consults with a cardiologist the conclusion is that I must have some kind of SVT.

Here is my problem though if I had a heart rhythm problem why haven't they caught it?? Why can't they tell me exactly what it is. I've heard everything from AFib to IST to SVT. What could these runs of tachycardia be?

The most recent incident was while driving I felt a flip flop in my chest and I couldn't catch my breath then the sudden BOOMBOOMBOOMBOOM i pulled over waited for it to pass and as I stepped out of my car there it goes again I felt dizzy and I slumped back in my car and called the ambulance as I had my 5 yo in the car and couldn't drive. When they arrived I was ok they gave me fentanyl and then my heart rate went all erratic and what sounded like little pauses. They said I had to go back to the hospital and on the way there having a nice good laugh with the paramedic I felt dizzy and then my heart went up to 150 not too bad but I def felt it.

So after all of this I've been told to go see an EP specialist and they are trying to talk me into doing an EP study. I am very reluctant to do one because as far as I know every time I've had an attack of tachycardia and have been in a place that they could do an ECG I'm always in sinus rhythm or it goes away and they don't catch it on times.

I don't want to undergo a EP study if this isn't an actual arrhythmia. But then the question is wth is it??

I even tried diazapan for 1 week and all it did was make me high but I still got these runs of tachycardia, chest pain and shortness of breath.

The doc keeps telling me to go to the ED when it happens but if I did that I would be there every 3rd day and if I went down to the ED each time I had chest pain I would never leave! I just don't see the point they never catch it. My heart rate is frequently all over the place, I will wake up with flutters and I get an odd sensation of a quiver in my chest and I tremble a bit.

I've tried holters but only for 24 hours. I'm due for an event monitor in about two weeks.

There is however one thing worth mentioning, twice that I have had particularly bad runs of tachycardia my potassium had been low 2.9 and 3.

The ED doc sort of dismissed it but my cardiologist confirms it could be the problem or making the underlying problem worse. The reason is that I havent always gone to the ED after an episode so I dont know how low my potassium has been at the time.

That is also being looked into by a kidney specialist in the meantime.

Any one have any opinion on this at all???

[KevinVail2236]

My heart rate used to go upto 220 occassionally and with chest pain. To cut a long story short, they thought it was AF and booked me in for EP. During this investigation the doc was surprised he could not get my heart to go fast, so tried the lower chambers and because I was so 'unwell' with a very heart beat concluded I had SVT. A week later I had an ICD fitted and have never felt better and no fast beats. I would suggest you have the EP. Hope that has helped.

[piggy001 in reply to KevinVail2236]

Why did they fit you with an ICD? I was under the impression that, that is only done when there is evidence of a more malignant rhythm like VT or you have evidence of long QT syndrome. Was the SVT damaging your heart?

[helenosborne1978]

You may capture evidence of the SVT on the monitor but the EP study will identify any possible 'short cut' pathways that are causing them. Try and think of the EP study as exactly that...a study. It will give you a clearer picture of what is going on so that you can make an informed decision on treatment. I initially declined an EP study but finally agreed after a nasty episode of SVT. If your condition is preventing you from leading a normal life this study might provide you with answers that you need. Good luck!

[piggy001 in reply to helenosborne1978]

Yes you are absolutely correct. Many thanks : )

[meadfoot]

Your story is a mirror image of mine in all details. Dreadful isn't it, I sympathise totally. I had an EP study one year ago as this coming Wedneday in fact. Please go for it. I am a terrified patient but in all honesty it was nothing much to go through, really. They look after you really well during the procedure. You are sedated and if you feel any discomfort they give you more sedation. I would have it done again if suggested.

Like all these things it's the idea of it which is the worst thing, on the day you calm down and are involved and cared for so much that any fear or panic reduces substantially and a calmness comes over you and you just get on with it.

THey try to stimulate your heart in an endeavour to start your symptoms so they can identify it. Sounds scary but it isn't in reality. They are in control throughout. It is fine believe me.

They can then decide how to deal with what they see. In my case my heart would not oblige but it did eliminate certain possibilities so it was valuable from that point of view. You may be fortunate as are many people that they identify your rogue electrics and can deal with it there and then. You have absolutely nothing to loose other than your nasty rhythms if they can isolate it.

Believe me it's worth having the procedure and if it means they can resolve all of this horrendous condition for you just imagine the joy of getting your normal life back. At the very least it gives them tons of useful diagnostic info for treatment plans and options.

Hope this helps.

[piggy001 in reply to meadfoot]

Did the EP specialist have any idea as to why they weren't able to manipulate and abnormal rhythm? What was the conclusion or is it still an ongoing problem?

[meadfoot in reply to piggy001]

They thought I might have a rogue pathway and or a genetic weird pathway but both proved to not be the case. I have af, svt and possibly atrial flutter.

My svt episodes are terrifying and put me in hospital with violent chest pain and near fainting. They go on for about seven hours . The pain requires morphine my hr is 200/300 bpm blood pressure very high then plummets. The episodes are devastating. Last time I had to be converted with intravenous flecainide. I would not wish these episodes on my worst enemy. They blight my life and I live in fear of another attack.

Have the ep study you may well be lucky and they resolve your issue. A year ago as today I was on the motorway traveling down for my ep study. I would have one again if there was any chance whatsoever of them finding and sorting out my abnormal rhythms. However in my case I gave been told it's like looking blindfold for a needle in a haystack so unlikely I will have a resolution that way.

That's not likely for you though just my misfortune. You have nothing to loose and everything to potentially gain.

I have a relative in Australia who had it done 10 plus years ago. They found her problem during the ep study, ablated the rogue pathway and hey presto she has not had any problem thereafter it was a total success. That potentially could be your outcome but you won't know unless they try.

Good luck.

😳

[Dee1989]

Hi, I have a form of SVT and when I was first diagnosed they were 99% sure they knew where it was etc from the ECG got into the EP study where they were planning to ablate it and they realised it wasn't only where they had see it it was actually in the left side of my heart, turned out they managed to manipulate four different morphological paths. Shocked as the doctors were they decided to abort rather then scar so much area of my heart and trailed medication instead. Medication didn't work and my episodes started to get worse. They decided to ablate again and during the EP they went into the left side Aswel luckily enough I got myself into a state waiting on the ward that I was in an episode when they put the catheters in. They said this was amazing as they could pin point exactly where it is.

I am now three months episode free I used to be in resus once a week before this.

I would suggest you do the EP study as from my experience my diagnosis has changed a few times.

We all know on here how tough it is to go through all these feelings but we have the most amazing doctors

Best wishes X

[piggy001 in reply to Dee1989]

That is an amazing result for you! How fortunate! I know what you are saying about being in resus every week I try to avoid it as much as possible but sometimes it gets to that point I feel so sheepish going in as well I tend to down play my symptoms.

Could you please keep me updated on your situation and how you go over time and if your ablation remains successful.

I do have one question for you, what were your symptoms? Did you have sustained attacks of SVT? I am struggling to believe I have a true rhythm problem because mine resolve so quickly but they leave me shaky and my chest aches after. I also have a quivering feeling following an episode like a butterfly is fluttering in my chest I sometimes even shudder with it one nurse thought I was having a mini seizure :S

Piggy xx

[Hidden]

I've had all the tests under the sun...and I'm a needle phobic!....please try not to worry too much. They will find it eventually I'm sure. It sounds like you don't know what to do when the sensations come on - unless you feel faint, which obviously presents a more worrying scenario if driving, caring for children etc. I empathise with this. I never know which episodes to react to and which to ride out. The GP always says A&E and yet once there they do a troponin test only and dismiss as anxiety if negative! Drives me mad and wastes hours at a time.

I'd push on with the potassium investigations if I was you and eliminate from the investigation any other drugs you may be taking or conditions you may have.

Given that you are comparatively young have they checked your thyroid function?

Sounds like you need that EP investigation. Just do it. At least you'll have a clearer idea of what's happening and have more boxes ticked and crossed at the end of it.

x

[piggy001 in reply to Hidden]

Thyroid has been checked and just as a precaution I am due for an ultrasound on my thyroid next week.

I am also seeing a kidney specialist next week and in the meantime I am under going a 24 hour urine analysis. I wish it to be anything but my heart honestly but after consulting with the EP specialist he is fairly certain that it is but I can't help but say 'show me the evidence'. I am due to see him again tomorrow afternoon.

The problem that I have at the ED is that I do tend to leak a minor amount of troponin sometimes after an attack so they all go a bit nuts with me and I have to stay to exclude an acute MI. It never is though thank god but my heart def can't take this fast rhythm.

Sometimes I tolerate it very well other times I lose complete control of my body, slump over, shaking, my chest aches always, I cough violently and I feel a quiver in my chest.

I have very short runs of tachycardia and I have never had a sustained run so that again makes me question if it in fact is a rhythm problem or something else.

Looks like the EP study is the way to go.

Thank you so much for your reply it really helped me.

Did they ever get around to finding out your issue?

[art195]

Been through very similar situation myself . Same palpiitatons and diagnosed with SVT and Atrial ectopics etc. Feel faint , dizzy and scared. Had an Angiogram and thankfuly came out clear . Feel ill most of the time but my useless doctor tells me its not helped because of Anxiety ! He mostly told me to stop coming to the surgery so much because there is nothing serious and they cannot do any more ! It gives you real faith in doctors doesnt it ?

[piggy001 in reply to art195]

Oh indeed some doctors are awful. A few years back when i first became suspicious of my heart I consulted with a cardiologist who told me to take a holiday and de stress. Boy was her wrong. I don't particularly like going to the doctors for anything. I go by the saying look for something you will find a problem. Unfortunately this is fairly hard to ignore. Leaves me feeling like a ran a marathon sometimes. You should have seen my face the first time they told me my troponin was postivive i almost said 'wrong bed lady' hahaha.

[Devine75]

Sounds like svt to me I had an ablation in October 2015 for it and then again in November 2015 for vt. It's so worth going through the tests to catch it then choose the right option for you to continue with a normal life. Please don't ignore it. I struggled for six years with it undiagnosed and was blacking out.

[piggy001 in reply to Devine75]

Thank you for your reply i really appreciate it. Why didn't they ablate the VT at the same time? Or did they not know you had it? Just so hard to wrap my head around it because it came on suddenly. I had issues before the biggest one i remember was feeling dizzy and waking up gasping for air with a funny feeling in my chest but I just didn't think anything was seriously wrong.

[Devine75 in reply to piggy001]

They did not know I had vt it started 5 weeks after first ablation so hence had my second ablation seven weeks after first. My first black out was out the blue in 2009 but I think looking back there were symptoms but very far apart and not life changing. They do say that it's normal to get worse over time hence another reason you should seek to get sorted out adapt. I have a three year old daughter and dealing with svt/vt whilst trying to be a mum has been very difficult so I am glad that 'hopefully' it's all behind me now. I do still have ectopics which are quite difficult to deal with at times but not as bad as the svt/vt that's for certain!! Keep me posted on how you get on and if you need a shoulder I'm always here x

[piggy001]

Thank you every one this has all been very helpful. I guess I am fearful of the EP study because of what they may find rather than them finiding nothing. I am a bit of an avoid-est and all of this has forced me to give up my year in paramedical science, faculty made the decision that I would not be a suitable candidate because of my current health situation. So instead of being a paramedic they say I can do nursing but after all of this I am unsure I was so close to the end and now I have doubts.

It makes it hard because I am on my own with my 5 yo. I am still married but have been separated for 3 years and don't live together so I'm paranoid that something might happen to me when I'm alone with my son.

In fact this morning I was very tempted to go down to the ED, I woke up feeling like my chest was being crushed and there goes my crazy heart with it running up and down. I always get the urge to cough violently with it and I tremble very badly after an episode, so bizarre. I'm still very uncomfortable in the chest but the truth is I am embarrassed to go to the hospital all the time. I know most of the staff down there and they are wonderful people and treat me with a lot of dignity however I feel like a fraud.

I fear I may develop cardiomyopathy from this issue as I tend to leak troponin after an attack not always and such a minor amount but still enough for a positive result. There have also been ECG changes with IRBBB and some TWI in leads 3 but no other ischemic changes. My sister developed cardiomyopathy of unknown origins as well. So far my heart looks structurally fine though.They have also considered genetic factors as my sister started with similar problems at my age although hers are the opposite of mine. I have low blood pressure, she has high blood pressure and so on.

My GP is wonderful and is very encouraging in pushing me to find an answer and I am grateful for it and all the exclusionary tests that they have done on my thyroid, adrenal glands and soon my kidneys will be evaluated for the potassium dumping problem.

I have an appointment with the EP specialist tomorrow afternoon.

It is very re-assuring to read all your replies and experiences with the EP study. I will keep everyone posted.

Piggy xxx

[PeterWh in reply to piggy001]

Being blunt (but hoping I do not offend) you owe it to your 5 y/o to get proper investigations and diagnosis. You are on that path but need to keep at it. Better the devil you know than the one you don't know!!! At least when you are told the results you know what you are dealing with and the particular options available.

At 5 you can teach your child to call emergency services and / or family / friends in an emergency. You can also write down key numbers and show the child where they are. In fact often in an emergency situation young children react better and with less panic than adults!!!

Good luck with those tests.

[piggy001 in reply to PeterWh]

You are absolutely correct. Thank you for your reply. I'm meeting with my EP tomorrow. I have a feeling my sister and her teenage son have started with some rhythm problem particularly her so who has fainting spells after running which is not good! So hopefully when i get answers it will help them get answers as well. They will be seeing my EP as well in the next coming weeks. Genetics hey : ) will keep you posted.

[PeterWh in reply to piggy001]

Great and great. Look forward to the next instalment!!!!😊

[Hidden]

Hi, mine presented differently to yours with bradycardia, ectopics, mildly positive troponin. I had autonomic nervous system disturbances too and a positive tilt table test. I got diagnosed with neuro-cardiogenic syncope and then later the dx changed.

I've recently developed atrial tachycardia.

I can relate to the weakness and shaking - I suffered with this and had a positive troponin test initially. I had squeezing feelings which reappeared in stressful situations and caused mildly positive troponin tests.

The coughing and crushing chest pain sounds more alarming...as is the blacking out.

I shouldn't feel guilty or fraudulent for going to the emergency room. Your symptoms sound pretty nasty and if there is something genetic going on maybe you owe it to yourself, your sister, your child and anyone else in the family to get to the bottom of it if you possibly can. Good luck with that EP study.

I don't blame you for looking for answers elsewhere and for feeling avoidant. It's a lot to take in isn't it. Being certain that the diagnosis is right isn't a bad thing either. I can understand why you want to check all possibilities.

Time will tell, but keep presenting to the emergency department and don't take any risks. You need to be kept safe!

Please keep us informed.

take care

xxx

[Janco]

Piggy

Don't feel like a fraud! Keep on seeking your cure. And when they find the "thing" and cure it, you will see it was worth all the struggle.

I think many of us felt like a fraud at some point, because the doctors could not find the problem, read this blog from an IST sufferer, and how she feels about people not understanding her condition: theinappropriatetachymummy....

And mine: myafibheart.com/blog/ and how many times I have wondered "is it just in my head"

There is hope and a cure I believe.

Janco

[piggy001 in reply to Janco]

I sure will check it out and thank you for your kind words. I just returned from the EP and the news was somewhat terrifying and upsetting. Not what I was expecting at all but I have my brave face on and will do what I have to moving forward : )

Piggy