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My journey with SVT and ablation

Oct 18, 2010 - 12 comments
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svt

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Ablation

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Heart



Hello all,

My journey started about a year ago Autumn 2009. All of a sudden I would get really dizzy, my heart would race and I would feel really ill. It wouldn't happen very often but It did start to make me worried. So I went to the doctors about it in December and she gave me indegestion meds (Somac /pantoprozal)????
I started taking the meds and thought nothing of it until Boxing day after having a couple of glasses of wine and while playing on the Nintendo Wii with the kids that suddenly my heart was racing, felt dizzy, was shaking, pale and sweating. I laid down and then the racing heart went back into normal rythym.
I called the local hospital and went there, they gave me an ECG and it was fine. Decided to follow up with my own doctor after the holidays.
January 6th 2010 we had friends over as it was a public holiday over here in Finland, again we were all playing on the Wii and all of a sudden the room was spinning. It wasn't due to alcohol either as I had decided to stop drinking after the Boxing Day episode. I had to grab the chair to steady myself, again I was sweating, feeling faint, shaking and heart racing. I went to the hospital again and the ECG was taken and again nothing. It seemed these darned palpitations were stopping before walking into the hospital.
It seemed the rest of the winter went by with the odd episode and me running back and forth to the doctors and hospital. My doctor is great, she sat and listened to me, we thought about whether my symptoms were from the Vagus Nerve as mostly they would come after eating a meal. She decided to send me for a Gatroscope of my stomach. Well the day arrived It was in mid March and I was as nervous as hell. I couldn't swallow the camera at all. I won't lie to you it was one of the worst experiences of my life and I hoped never to have to do it again. After about the 6th time of trying to force it down my throat I gave up.
I booked a repeat attempt for the gatroscope for 2 weeks later and this time I asked the doctor to drug me up enough so that I wouldn't remember a thing. So the day before Easter Friday I had my 2nd gatroscope. I do not remember anything at all from the procedure and that is how I want it. But after all that there was nothing found on the scope. So back to my doctors I went.
She then ordered an ultrasound of my stomach. The ultrasound found a 2.5cm diameter gallstone in my gallbladder. The doctor then said that it could have been the cause of all my problems, so April 23rd I was in Surgery to have my gallbladder removed.
Surgery went well, easier than I had thought, was well enough to go home the next day. Two days after surgery my left leg started to ache, I thought it was just because I had been a bit inactive after the surgery, but then the ache got worse so I decided to call my doctors. The doctors told me to come in for a blood test as the surgery was done only a few days earlier. So in I went again they took a D-Dimer test and sent me straight through to the main hospital for a scan of my legs. Anyway during the scan they found a small blood clot in the deep vein in my left leg, below the knee. Had to start taking injectable blood thinners twice a day and Warfarin until I was in the theraputic range. It took 2 and half weeks of twice daily injections and Warfarin to become theraputic. Once in the right range then I could continue with just the pills. Treatment would take 6 months, my warfarin sentence should be over end of this month.
During all this the heart palpitations would continue and the trips to the hospital would also. One week after the DVT diagnosis (May 6th) I had an attack that took me to the main hospital, again the heart would settle but they ran a CT scan with contrast just incase the blood clot had moved to my lungs. Lungs were clear and I was cleared to go home the following day.
I managed to get through the rest of May by just resting and not doing too much. We had major renovation work going off at the same time as we had found mould in our bathroom ( doctor did try to blame the heart palpitations on that too).
June came and the kids school ended on the 5th. My mother popped over from the UK and decided to take the kids back to hers for the summer. She saw what kind of mess the house was in and also how I was and said she would take them. No kids for 7 weeks!!!!!!!
The rest of June and July went by in a haze, heart palpitations, back and forth to the doctors, renovation, extremly hot summer +34 degrees most of the time.
Sometime in July I had a big attack here at home, while funnily enough watching the world cup England game. It just so happened I had my heart trace sports monitor on at the time and saw that y pulse was 230bpm. I laid down, sweating and feeling dizzy and after about 15 minutes it was over. I called the hospital and told over the phone about what had happened and she said I don't have to come in and wasn't interested at all in my problem.
I decided there and then that I would find out what these attacks were and made an appointment with my own doctor the following day.
After going through all of my symptoms again the doctor said she didn't know what to do, but decided to order me a portable heart trace monitor that I could have for 3 weeks to see if I could catch an attack. While waiting for the monitor she gave me beta-blockers propranolol.
The date and time came through for the monitor to be picked up, I went and got it, went through the training and went back home. I stopped all my meds to try to induce somekind of heart palpitation, but it is Murpheys law that of course nothing bloody happens.
I also had another problem, I had to give a seminar to top bankers during the time off my meds and I didn't want an attack to happen then, so I reluctantly took the monitor back and booked a new time 2 weeks later to take it. The seminar went fine, no palpitations no nothing.
I went back to the doctors and took again the monitor and this time I had 10 days holiday, so I didn't book anything during those 10 days and stayed at home. Luckily I did as well as on day 3 (Sunday  5th September) I had a huge attack that took me to the ER and finally my heart palpitations were caught on film at the hospital and also my tiny portable heart rate monitor. My bpm was 197 and as it wouldn't convert on its own I was given Adenosine to convert back into normal sinus rythmn. After that my doctor moved very very quickly. I had a heart stress test on the 10th, heart ultrasound on the 13th and referral for an EP Study with possible ablation set for 2.10.

Well the nerves set in, but the heart palpitations started to get better, it seemed they were scared about the upcoming ablation and decided to be on their best behaviour :)

Well the day before the procedure we travelled to the specialist hospital 3½ hours away. It was a private hospital and the city would foot the bill as they have a duty to provide care for me. Over here in Finland you have to be treated within 6 months of diagnosis and if the main hospitals are busy they have to buy the service from the private sector. I am glad I didn't have to pay myself as the bill came to 9000 Euros.

About the EP study ablation.

I arrived at the hospital at 6am and they prepped me with the usual hospital clothes, IV, form filling stuff. The Cardiologist came in and told me I was 2nd in the queue, (he was doing 6 that day) He started his first one at 7.30 and came to get me at 9.30 for mine. The cardiologist is one of only a handfull in Finland that does ablations and only comes to the hospital once every two months.
I walked with him to the cath lab, he pushed my empty bed all the way while we walked and chatted about the weather and how cold ot had been that morning.
I entered the cath lab and was frozen with fear when seeing all the monitors and stuff. One of the nurse asked me to get on the table and I distinctly remember asking for sedatives, but the doctor said I won't need them. He prefers to do the EP study without them as the heart palpitations are triggered easily.
So there I was laying on the table naked, shaking with nerves and cold, being prepped for the procedure.
I decided at home that I would de-hair my private parts as I kept having bad dreams of different kinds of designs being cut into my pubic hair, I felt more comfortable after that....lol
The nurse sprayed some cleansing solution onto my groin, then laid the big sterile sheet over me. It was strange watching and seeing what they were doing. The nurse was chatting to me the whole time and made me feel relaxed.
When everything was ready the cardiologist came in and started to inject the numbing stuff to the groin. It wasn't so bad but I did tell him enough was enough when it started to hurt.
After a couple of minutes he came back and had made the hole and had the catheters inside before I knew it.
They then turned on the fluroscope and I have to say it felt a little strange laying there, doctor at your groin and watching these catheters going up towards your beating heart.
As soon as he neared the heart the palpitations started. Doctor was saying that they are very sensitive. I just mentioned that if something was prodding in your heart they would be sensitive too...He found the spot straight away and started burning the area. The only problem he had was the palpitations would start up again after the burning. He was not able to use the maximum power to burn the tissue as it was deep in the heart muscle. He ablated 10 spots and said that he had done enough to make a difference but he couldn't be sure if it had worked.
The whole procedure took about 1½ hours, I was then moved to my own bed with lead weights on the wound and wrapped in bandages to stop the lead from moving. Funny thing is that when I was totally wrapped up and told not to move for the next 6 hours that I needed to pee, it was soooooo bad, so the poor male nurse had to bring me a bed pan, undo the bandages and press on the groin while I was trying to pee. Well it seems my pee is shy too and didn't want  to come at all, making the nurse tut and tut while standing there. I told him I would try again later....lol....Good bit of advice is to pee while you can BEFORE the procedure to save further embarassment :)
The worst part of the whole thing is the laying on your back for the 6 hours, it is soooo boring that make sure you take something to read with you.
After the mandatory resting is done, then you can get up and pee on a normal toilet.....whooohooo! My groin was a little sore but I managed to get up and walk around the small hallways during the rest of the day. I spent the night in the hospital and the following morning I could go home. During the night there were some flutters and palpitations, but then again I hear it is normal after such a procedure.
When arriving home I was very tachy, lots and lots of them on and off for the following days. I was scared to say the least as we were supposed to be flying to my cousins wedding in the UK 6 days after the procedure. I was terribly tired too, it was as though I hadn't slept for weeks kind of tiredness. The tiredness started to go away and also the heart palpitations started to calm down.
We flew to the UK on the 8th and back to Finland on the 11th, a short and tiring trip. Last week again the paps started to come and go and yesterday I had some flutters in my chest during the night. I remember waking up feeling dizzy. If this is still continuing next week I am going to contact my cardiologist and see about what can be done.
I can't take beta-blockers as my blood pressure has dropped to 95/57 and my pulse is 55-60. (earlier it was always 75-85 even when resting) I am 36 years old, female and have lost almost 30 kilos since these episodes began.

I will now update my journal regularly to keep you informed about my progress.




Comments
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996946 tn?1503252712
by LindaTX, Oct 27, 2010
I feel so bad for you.  I'm a lot older than you but I think our ablations were similar, although mine was for a-fib.  I am having 24-hour episodes every other day and it's really wearing me down.  It's been 5 weeks now for me and no improvement.  I too have lost wt because when I am in one of these arrhythmia episodes, my digestion stops and my food sits in my stomach and therefore I'm not hungry.  Maybe we can keep in touch on our progress.  Keep me posted and I will do the same,  Linda

1465650 tn?1316234760
by Janpes, Oct 27, 2010
I am so sorry to hear about your episodes, even though I don't have a-fib I still understand what it is like to have this terrible life changing problem.
The cardiologist called me today almost 4 weeks after the ablation. The last time I spoke to him was the 10 minutes on the day I was freed from the hospital.
I told him about the big episode I had last Friday, he said it was a positive sign that the SVT didn't start up and promised to call me in a months time to see how I am and to see if we need to reschedule another ablation.

Having some problems with my blood pressure right now. My own doc said drink some coffee, eat some liqourice and smoke a cigarette...lol...I don't do any of those... I hope he was kidding!!!  That should get your blood pressure up.

I am now keeping a log/tracker of my blood pressure. I am also trying to focus on the food side, I just like you seem to stop eating after an attack. It seems my insides freeze up and it takes a good few weeks to get back to normal. (whatever that is)
Keep in touch with your progress, it is nice to have someone to talk to who actually understands what it feels like to have a heart with a mind of its own.

Take care
Jan

Avatar universal
by jennyfi1234, Oct 27, 2010
Wow, it sounds terrible what you have gone through I hope you are feeling better really soon! I am curious, how come they ablated as soon as finding out what you had? I have only had 2 episodes of it in 3 years, which is more than I care to have, and so I dont take meds for it,  but I know others with it that have lived with it for years and years and never had the ablation done, and you had it for one year and had an ablation-- so I am curious-- (maybe you said and I forgot?)
One more question, did you find out why you would have spinning sensations with it? Did the spinning last the entire time it was in tachy? I never got dizzy, but I did have a near faint.

1465650 tn?1316234760
by Janpes, Oct 27, 2010
Hi Jennyfi1234,

They ablated so soon because 1.) I think they were sick of seeing me :(  and 2.) that the SVT was becoming more frequent and unpredictable. 3.) I couldn't tolerate any medication for it due to my low BP.  My doctor also put a driving ban on me as I drive a lot for work, so getting me back to work was a priority as I am self employed.
Over here once you are diagnosed the doctors have a duty of care to get you treatment within 6 months, even if that means buying the treatment from the private sector, which for me was a good thing.

The doctors said the dizzyness and the spinning sensation was due to the blood pressure issue. When an SVT attack would occur the heart rate and BP would go up momentarily and then as the episode continued the BP would crash and crash even more after going back to normal. The last big attack I had I was very very close to fainting, so they did the adenosine push very quickly, but it took me at least 4 days to recover from it.

Even though I am going through a rough time right now, I am glad that I had it done and at least gave it a shot for a cure. Hopefully what I am going through is just the normal healing process and that time will heal.

Take care

Jan


Avatar universal
by jennyfi1234, Oct 27, 2010
Jan, that really stinks! I too have low BP thats ONE reason I opted out of BB for frequent pvcs. Thats amazing though that you get treated right away! I hear people talk about that  adensoine being a nightmare! I had a near faint from my svt also--no one seemed concerned over here. It was scary to feel yourself going out, so I can imagine how you felt! In my case, I had a funny hard beating---not fast or fluttering--just like BOOM-BOOM-BOOM for like 10-15 seconds then Bang---into the tachy I went, and within 20 seconds into the tachy, I started going out---which is weird, because I had one episode where I felt totally fine while it raced, but I wonder if the fact I was in the shower prior to the attack made a difference. I wish you lots of health from here on out! :)

1465650 tn?1316234760
by Janpes, Oct 27, 2010
The adenosine was just awful, I ached everywhere and felt like my head was gonna explode, it is short lived but it does put you off wanting to go through it again.
I usally feel ok if it a short one couple of minutes, but any longer than that and I was on the verge of passing out, especially with heart rate upwards of 230 bpm.

I don't know if the shower would make a difference or not. Before my ablation the paps would come and go at the drop of a hat, really inconvienient when in the store or driving the car. I have a sauna almost everyday and it doesn't affect me at all, strange really as the bp goes up with the heat and all.
You didn't say if you had an ablation or thinking about one.

Take Care
Jan

Avatar universal
by jennyfi1234, Oct 27, 2010
No, I havent had an ablation. I was told I should have one for my pvcs, but I am not willing to at this point. Noone ever mentioned my svt--probaly because so far they are spread out --one then 3 years the second one.

1465650 tn?1316234760
by Janpes, Oct 28, 2010
Hi Jenny

What is holding you back from having one?
2 days after my adenosine episode my heart doctor called me and said he was sending me for the ablation. It seems over here if you are young, then they send you straight away for an ablation. The risks of having the ablation are smaller than lets say 50 years of meds. I am so glad I had it done, 4 weeks on Saturday post ablation, my paps are getting less and less. So hopefully I can pick up where I left my life and get on with it.

Avatar universal
by jennyfi1234, Oct 28, 2010
I  just have my concerns that eventually they will find problems with it. I also dont have to take meds at this point. I agree though, i think its more safe than meds, and if I have to, I will go, just not there right now. That is amazing though that you are doing so well!

996946 tn?1503252712
by LindaTX, Dec 02, 2010
Jan, how are you?  I was wondering if you ever heard from Jenny again?  I'm still struggling pretty much as I have been...no improvement but I am starting flecainide tonight so maybe that will do it.  About the adenosine...when I was having a stress test in Alaska in 08 I went into a-fib and so they gave me adenosine to convert me back while starting the tube part of the stress test where they do the xrays.  Anyway the adenosine threw me into v-tach and it made me feel horrible, like I was having a heart attack or something.  I spent the next 4 days in the hospital.

1465650 tn?1316234760
by Janpes, Dec 09, 2010
Hi Linda, Haven't heard anything from Jenny. I sent her a couple of messages but didn't get anything back.
I am also struggling right now. Seems I had about 7 or 8 days pap free and then they started to get worse again. Cardio called and put me on beta blockers. I have now stopped taking the BB's as I was getting some irregular heart rythyms while on it. Now is my 3rd day without and I am feeling like poo :(
Cardio also said he was thinking about rescheduling another ablation for the start of the year, but I told him I want it as soon as possible.

Avatar universal
by Wendy900, Feb 23, 2011
What an ordeal...best of luck and keep us posted.

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