Long QT syndrom???

[mrsboston3122]

I need your help again:) You all have such knowledge about diff things. I have posted many times abput palpations. I have had them since I was 22 and I am now 28 (female). I have PACS and PVCS that feel like flutters mostly but I have been having this new thing where I feel the only way to describe is like a catch in my breath and have no idea what it is, anyone else have this with these beats? Ok moving on, I noticed that on a few of my EKGS my QTC was 451 on one and 457 on another, is this normal? On a few the actual QT number was higher then the QTC number, is this normal? I have been trying for years to figure out why these beats plague me and I have just recieved new information about my father who I never met before. Actually for the past 10 days I have been feeling like I am going to pass out, dizzy but not room spin dizzy. I had one scary bout a couple months ago where it hit me hard and I really thought I was gone but I never went out and it was brief, these spells now are lasting longer and happening all the time. I went to the ER on Sunday night because it was so bad but they found nothing. Ok so my both my father and my grandfather died in their ealry 50's suddenly. No one knows why. My sister just told me that both my father and his younger brother who died at 17 fainted all the time, my father was told he had epilespy but then told he did not and no one ever knew why he fainted and he did so until he died. I personally have never passed out but I feel like I am about to often. Anyway does it seem like my family could possiably have this? Are my numbers considered long? Thank you so much for any advice:)

Tanya

[mrsboston3122]

Thank you so much for the information:) I actually went about and collected all my EKGS and found one with  QTC of 479 however my BPM was 109. There is a woman who host's a site (a doctor) supposly expierenced and I sent all my EKGS to her, she said she measured them and that the QTCS were shorter then recorded and that my QT looks fine to her, I know not to just take her word for it and I did make an appointment with the EP doctor who did my study but its not until the 9th of this month. I called my cardio today and asked for a monitor but he says he does not feel it would be of any use. He is trying to get me set up for testing but feels that I dont have a prolonged QT. Either way I am feeling faint often and I am scared to say the least. I have told the primary doctor who just looked at me, I have been having head pain for a few weeks now and so I went and seen the neuroligist and he says my MRI was normal, I went to an ENT and he said he does not know why I feel the way I do but he will try and figure it out. There are times I am so sure that I am about to pass out. Normally I feel my early beats and sometimes I have been on a monitor and will have them and dont feel them. I have noticed when I take my BP with my home monitor it keeps saying irregular heart beat. I am just trying so hard to figure out whats wrong and it seems like everyone is brushing me off. I have 2 small children and I am scared out of my mind.

My son just needed an EKG because he is autistic and ADHD and the docs want to treat him, I peeked at his because I was curious about QTC and his said he had LVH abnormal ECG. He is only 11 and now I am worried for him:( I made him an appointment for 2marro to see his doc to discuss.

I had a stress test in May and it was nrormal, I have not had the one with chemicals but when I had my EP study a few years ago they injected me with it and that was normal however it was a few years ago and you said they would not know through that anyway.

I just want to know why I feel like I am going to faint and I pray its not life threating. I could be just watching TV and it will come and I am just like wow what was that. It happened about 2 months ago on my way to work and then it did not until about the 20th of this month and its getting to be an every day thing and its freaking me out, I feel hopeless because I cant get any help. I also been to the ER 2 times and they just push me off, I know there are people more sick then me but just what if its serious? Sorry for going on and on.

[stevie_wonder]

Hi,
I have Long QT Syndrome and have spent the last 4 years researching every existing article available on the internet (I even paid for some that I couldn't access - until my husband saw the CC bill! :()

There are now 12 different types of LQTS but more will be found. This is quite a new disease and was only recognized and treated in about the last 30 years or so with the last decade exploding with new research and studies all over the world.

Numbers are really irrelevant with Long QT unless the ECG is read by an experienced Electrophysiologist (EP). QT intervals vary in the different leads and they need to be hand measured in each beat of the heart on the ECG to be accurate. ECG machines are NOT accurate for measuring the QT interval. There are too many factors involved with the shape of the T waves and sometimes TU waves for the machine to be able to decipher all that info.

QT intervals in women are quite normal up to about 460 ms. My ECG will sometimes read QTc 460 ms but when hand read is actually well over 500 ms because of the shape of my t waves. Then on the next ECG it will read 560 ms and really be only 530 ms. So it really is important to have the QT interval hand measured.

Seizures are a known symptom of Long QT Syndrome and many many people with diagnosed Epilepsy don't actually have it and have LQTS instead. The fact that you have family history of seizures, unexplained sudden deaths and some vague symptoms yourself, I would think that you should be assessed by an EP as soon as you can. Don't panic, but do look into this further. (Just my opinion)

PVCs are not a symptom of LQTS but PVCs that fall on the T waves often trigger the arrhythmia Torsades de Pointes which is the arrhythmia present in LQTS. The shape of the T wave after a PVC can also help doctors diagnose LQTS.

The point system that Pamz posted is quite accurate when a person fits into those categories but it does miss out on many people who don't fit in. If a person has 4 points it is almost 100% accurate in diagnosing LQTS. She was right that LQTS is very hard to diagnose at times. Genetic testing has a 75% chance of finding a mutation in a clinically diagnosed patient. This mutation finding can be used against other family members to sort out who is affected and who is not. Some families have more than one mutation. Some families have a known mutation and an unknown mutation so this makes it harder to exclude people. (see how complicated it is!!!)

The arrhythmia (Torsades) in LQTS is very fast and usually causes fainting but it can be short-lived and revert back to sinus rhythm and in a few people they can just have momentary dizziness. A holter monitor could pick this up. Tests for LQTS include ECG, exercise stress test, Adrenaline (drug) challenge stress test, holter monitor, and genetic testing. EP studies are not done for LQTS.

Treatments for LQTS include one or a combination of Beta Blockers (except for a couple types of LQTS), Implantable Cardioverter Defibrillators (ICD) & a type of surgery called Left Cardiac Sympathetic Denervation (which should only be done by a VERY VERY experienced doctor - Mayo Clinic is the best). Pacemakers used to be used but now ICDs are almost always implanted instead because pacing is not that effective alone.

The good thing about LQTS is that once it is treated it becomes a very manageable disease that makes living a normal life quite easy. With a few lifestyle restrictions most people live long healthy lives.

Good luck & take care,

[mrsboston3122]

I dont know how to do the whole T wave and Notched or whatever so I dont know. My highest one that I have seen is 457 but I am a woman is that ok? I have not passed out but lately I have been so close, I also seem to suffer from frequent PACS or PVCS when my heart rate is slower and I keep feeling like a catch in my breath.

[Pamz]

According to wikipedia, lqts is hard to diagnose so they do it by points.  

qtc >= 480 msec +3 points
           460-470 msec + 2 points
           450 and male + 1 point
Torsades vent tach + 2 points
T wave alternans + 1 point
Notched t wave in at least 3 leads + 1 point
Low heart rate for age (children) +.5 point
Syncope with stress + 2 points
Syncope w/out stress + 1 point
Congenta deafness + .5 point
Other family members w/definite lqts + 1 point
sudden death in family member (less than age 30) +.5 point


4 points high probability, 2 or 3, possible, 1 probably not

[mrsboston3122]

Anyone? Help please? I have had so many things going on in the past month.