Heart Disease and Heart Attack Forum - Your Experiences of Wolff Parkinson White Syndrome

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Q: Your Experiences of Wolff Parkinson White Syndrome

asked by: ~Kat on April 4th, 2006

New User

Hi everyone, i'm a newbie and just discovered this forum whilst searching for wpw related items tonight :wink: I would be really interested to hear of other peoples experiences of wpw especially with recurring wpw after ablation.

This is mine.

My name is kat and i'm 25 years young, northern irish and recently moved to texas in the good old us of a. I've had wpw diagnosed since I was 10 years old and have been on a multitude of drugs including propranolol, flecainide, digoxin, lanoxin,bisoprolol, metoprolol and verapamil..Thats what I can remember! I've had 3 unsuccessful ablation surgeries between the ages of 17 and 18. The first one was a disaster as I was given diazepam as a sedative and it was discovered that I was deathly allergic to it. The surgeon (tom trouton) spent around 9 hours trying to zap the pathway and couldn't get it. The 2nd op was done under a different sedation and the same thing happened. I have a weird adverse reaction to benzo and narcotic drugs and stop breathing when im given them..Real cool huh :roll: :lol:

the 3rd op was done under a general anaesthetic and my heart rate soared to 520 bpm and after being given adenocard went into ventricular fibrillation. I was cardio-verted and he got me back again thankfully after 12 mins of trying and instead of waking up on my usual familiar wee ward, I woke up with a tube down my throat in cardiac i.C.U. :shock: ! That was another failure! Since that i've had countless trips to er as my heart goes into svt and atrial fib just to complicate matters and ive had to have adenocard so many times ive lost count.

My surgeon said at my last appointment that I may have to look into having a defibrillator fitted which I really don't like the idea of at all! I may have to bite the bullet though as lately my heart has been worse than ever going into mad beats of 300 bpm plus. I just hate that feeling of it going fluttery and merging the beats and having that cold feeling in my throat and dizzy/tired feeling. My husband is a paramedic and also suspects that im throwing pvc's just to add to the fun!

I was diagnosed last august with epilepsy after having seizures out of the blue and the medication for that is definitely interfering with the verapamil that i'm on.I'm very active but it seems lately that i'm getting too tired to do my beloved long distance running and dog agility. I just recently moved to texas and am looking into cardiologists in the area where I live but I really do dread going to see one as I know it won't be news that I will want to hear :?

Alrighty thats enough rambling from me so I shall sign off and look forward to hearing from y'alls wpw experiences.

Best regards,

kat :d

Replies(7)

Hally

replied on May 30th, 2006

New User

Wow, thank you for sharing your story. I was 34 weeks pregnant with my second son when I woke up at 6 in the morning with my heart racing. I have had my heart start racing for no reason several times through out my life (i'm 26), so I didn't think too much of it, it has always stopped on its own after about 15 min. To a half an hour. I just thought that everyone's heart started racing like that from time to time.
But on this day 15 min came and went and it was still racing, it was going so fast I couldn't count the beats. Then a half and hour came and went then an hour. By this time I was getting nervous, I felt okay a little tied and dizzy but not too bad. I started to worry about my baby, I was worried that he wouldn't be getting enough o2 or blood because my heart was going so fast, I didn't see how it could have been pumping blood as well as it should. So I called my doctor and she said go into the er as soon as possible. So I went in and my resting heart rate was at 180. My baby was doing fine but I started to go into labor as a result of the stress on my body. They had to give me meds. To slow down my heart rate, I don't remember what it was called but it basically stopped my heart for a moment and restarted it in normal sinus. So they caught the event on ekg and thought I had avrt, so in april of 06 I had an ablation. The procedure was very painful and did not go well. They got the arrhythmia started fine but it was not what they thought it would be and it turned out to be wpw and the pathway was only a millimeter away from my natural pathway. They used a new cyro catheter and so far I have not had any problems, the specialist who did the ablation said if I can make it 3-6 months without any problems I should be home free.
Did your ablations hurt? Where did they go in from? Did you have dizzy spells and chest pain after the procedure? To be quite honest the Dr. Who did my ablation didn't really answer my questions, and everything happened so fast I really didn't have a chance to research anything. So i'm interested to hear from other people with this disorder.

mindyandkai1

replied on June 21st, 2006

New User

Hello.. Another Wpw Patient

Hello out there...My sister got me into these forums when she researched my heart problems. I would like to know if there is anyone out there that has peripartum cardiomyopathy & wolff parkinson white syndrome... I seem to find people that have either or.. But not both.. What we have is so rare with the wpw but to have both. It's been my living nightmare for almost 3 years now. I have a cardiac ablation scheduled july 27th. A little nervous about it, but thankful that it will be done at one of the best hospitals in the world. My cardiologist is great. But, once this is done I still have the cardiomyopathy to worry about. My ejection fraction is still very low at 30% and I am so sleepy and tired of being tired. I hate the medications and for being 27.. It's a lot to grasp in... No drinking, no coffee.. No red bull.. No more kids...I will fight this thing for my son so that I can stay in his life as long as possible. He is going to be 3 years old and he just is the only thing putting a smile on my face. Let me know if anyone out there has both heart problems. I would like to hear how you feel and what's going on.

Hang in there... I am... :?

siddhartha

replied on February 5th, 2009

New User

adenocard

hello,
when you were on adenocard did you experience the feeling of dying?

Tcomb45

replied on May 10th, 2009

New User

Every time i had adenocard i felt like i was dying.....I hate the feeling....It scares me..This is the first time i heard of anybody else saying that it felt like u are dying..

timeisshort

replied on May 10th, 2009

Experienced User

I m not familiar with these terms

I understand they are heart disease related & i have just, this week discovered that up to 50% of the population are infected with helicobacter pylori, a parasite that can cause heart disease & a lot of other symptoms, i read that some doctors or even specialists maynot be aware of some of the contributing symptoms that are associated with this parrasite! Could this be an over sight in the treatment of the symptoms in this blog?

bowhnter1968

replied on August 3rd, 2009

New User

wpw for twenty years

hi im almost 41 year old male have been going through this sice i was 21 had my first ablation at 24 was one of the test pts that they tried to fix wpw on i have had nine heart caths three failed ablations well partially failure was beating over 270 a min now not so high my ejecton fracture is 36 % going into chf and filling up with fluid have put on 30 pounds in 60 days and they dont know what to do with me im a disabeled vet spen almopst six years in the navy and the va is terlling me alls ok whenever i see them i have been on every drug there is for wpw now i take 425 mg sr rythmal twice a day hav ea new born baby dont know if i will get to see her first bithday well thats all i can think about

rzeznikgoosnail

replied on August 26th, 2009

New User

Abalations should not hurt unless the dr has done something wrong, or is doing something wrong. I have had two done on myself this year. I have wpw syndrome. You should not be aware of what is going on during the procedure, you will have a sedative. although during my first procedure I was very aware of what was happening and it was totally terrifing. Sedative wore off.

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