long q/t syndrome?

[tboyd]

Dr. Fett,
I was watching 20/20 or a similar show and they ran a story about a young adult female that died suddenly and after her death was extensively researched, she turned out to have a syndrome called long q/t. Her only symptom was unexplained random "fainting" spells. Her death was due to a sudden noise/startle. I believe they said it may have been her alarm clock that made her heart stop. I understood them to conclude that this condition shows up on an echo but you have to know what you are looking for.
I have had unexplained "fainting" spells since I was small. :confused: I was diagnosed with PPCM at age 30 after a very healthy pregnancy and the delivery of my first (and it looks like my only:( ) child in August of 2000 with an EF of 20%. It has taken 5 years to get my EF up to the mid to high forties range. Is this syndrome something I should mention to my cardiologist? Could it have anything to do with my PPCM diagnosis? I would greatly appreciate any insight you may have on this syndrome.
Sincerely,
Tonya

[tabs]

There is a woman on the board who has long QT syndrome. From limited knowledge, I would think that this syndrome should be able to be picked up (or at least a suggestion of this syndrome) on an EKG. The 12 lead versions record the the movement of the electrical pathways through the heart from many different angles. Each segment has a normal measurement. The segments can then be measured and compared.

Twilah

[heartfulloflove]

I'm with Twilah on this, I'm thinking they would see Long QT on an EKG, thus if you have PPCM I'm sure you've had a few of these and it probably would have been picked up. Then again, I don't know this for fact. If you have concerns I would definitely mention it next time you see your doctor.

[LauraNP]

Long QT syndrome is diagnosed by EKG, not echo. It's certainly possible you might have this problem but I would bet you've probably had at least one EKG so they probably would have seen it.

It doesn't have anything to do with PPCM, it's a separate problem. Long QT syndrome is an electrical problem of the heart and PPCM is heart failure. But it's possible to have both..

[tboyd]

Thanks so much for your input. It is nice to be able to gain insight from so many others that know where I'm "coming from". :)

[LauraNP]

You're welcome. And welcome to the board. :)

[doloresmc]

I've never had fainting spells of any sort, until I had sudden death..I was hospitalized after that because of Long QT, without really knowing of the heart failure at that point (they had just done an EKG, echo came about next day) Then they realized I had heart failure due to PPCM, but they had the hardest time figuring out if the sudden death was due to Long QT or cardiomyopathy. It was determined to be a consequence of the PPCM, based on the place of my heart lesion, and also due to the fact that I was brought back, after the sudden death with just CPR, no defibrilation for me, and also because my QT went back to normal when my heart's size went back to normal too. But it kept prolonging during exercise, stress.
They also studied my parents/sibling and kids for possible long QT with 24 hour holters and epinephrine stress tests. They all came back negative. And I have no history of sudden deaths at a young age in my family, something that usually clues in to long QT. As you may know by now in long QT not knowing about it is what kills. I got an ICD in 2005, and I love it!!. I haven't been shocked as of today but it's just nice to have it if I were to need it. I also take 50mg of Toprol xl/day. I can exercise and lead a very normal life.
They can't diagnose long QT with an echocardiogram. They need an EKG, and even so it's difficult because it may be normal/borderline. You need a stress test, on the treadmill or with epinephrine. If you know/ suspect you have it you should definitely mention it to your cardiologist. If you suspect it demand a definite diagnosis..Please take it seriously.
I see an electrophisiologist cardiologist..actually I have follow ups for it, or ICD readings every 3 months. I am not under the care of a cardiologist for PPCM anymore. It is a deadly condition and needs to be taken seriously.
Sorry this got so long..good luck and keep me posted please

[tboyd]

Wow! What an experience. I'm glad you are doing so well. I will definitely mention this at my next visit. The part about the unexplained fainting spells really got my attention because they have never been able to find any cause for mine. I'm sure that everything is fine with me but after all I've been through with PPCM, I tend to not disregard symptoms like I used to! Thanks for responding to this. I never fail to be amazed at the different conditions that are out there that so few of us have heard of. It seems like I remember them saying that there have been a few cases of atheletes dying of this due to the buzzers going off during their game. It's just so sad to think that many deaths could be prevented with the proper screenings. I'm so glad that your family tested negative for it.

[doloresmc]

I'm sure you are ok too, but it's worth mentioning. Just like you I try not to disregard any symptom now. Many cardiologist are still not aware of how serious long QT is. I had one cardio that even said *but you're taking toprol, you are fine *. And that was a cardiologist: needless to say I didn't see him back.My old GP didn't think much of it either but after having been through sudden death and PPCM I realized I have to be my own advocate.
As I said before not knowing is what kills..if you know you have the condition, you know which drugs to avoid, and to avoid startling, you get beta blockers and an ICD and you can live a normal long life. Fainting is usually the only symptom this disease shows aside from death!.
Good luck to you!!
Dolores

[tboyd]

My annual exam will be in August. I will discuss this with my cardiologist then. Thanks so much for the information. I will let you know how it goes.