Long QT Syndrome Heart Disease.

landsurfer
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Long QT Syndrome Heart Disease.

Postby landsurfer » 10 Jun 2019, 11:05pm

I've just been diagnosed with Long QT Syndrome ... and the Doc told me to keep on cycling ...... any others out there, any thoughts ?
Be a do'er, not a watcher. Be a Sceaphierde, not a Sheep.
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John100
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Re: Long QT Syndrome Heart Disease.

Postby John100 » 11 Jun 2019, 8:35pm

You don't say whether you have seen a cardiologist, which I would if I were you. Obviously exercise has benefits - too few people do too little. However I wouldn't go for any Strava segment records at present! Also it has genetic implications so any family may need testing. Apologies if this has all been gone through with you already.

Colin_P
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Re: Long QT Syndrome Heart Disease.

Postby Colin_P » 15 Jun 2019, 3:43am

Do you know what type of long QT your have got, there are many?

landsurfer
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Re: Long QT Syndrome Heart Disease.

Postby landsurfer » 15 Jun 2019, 7:27am

Seeing the cardiologist on the 5th August.
Been given a GTN spray.
I cycle 50 - 70 miles most weeks, usually in 3 rides.
So i'm getting enough exercise for my age ( 60 ) i believe.
I get a tight chest walking up a couple of flights of stairs but no symptoms working up long steep hills, out of the saddle, on the bike ?!
But ...
I fall asleep ... i get plenty of warning, then gone ...
If driving i just pull over in a lay-by and sleep for 15 minutes and i'm fine.
The debate with my doctor is ... am i falling asleep ..... or passing out !!!
Lack of blood supply to the brain as a result of the QT ?
Im not worried about this ... i'm annoyed ... i have too much planned for the last 20 healthy years of my life for this to happen.
Be a do'er, not a watcher. Be a Sceaphierde, not a Sheep.
Mike Hall, Jenny Graham .. Respect. .... The Road Goes On Forever !

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horizon
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Re: Long QT Syndrome Heart Disease.

Postby horizon » 16 Jun 2019, 11:36am

Good explanation here (not for OP whom I presume knows all this stuff):

https://www.nhs.uk/conditions/long-qt-syndrome/

Still didn't say what QT stands for though!
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Re: Long QT Syndrome Heart Disease.

Postby leftpoole » 16 Jun 2019, 4:59pm

landsurfer wrote:I've just been diagnosed with Long QT Syndrome ... and the Doc told me to keep on cycling ...... any others out there, any thoughts ?

I have Long QT. My Cardiologist tells me it’s pretty serious and on top of my Heart failure following a Pulmonary embolism I should not ride a bike because of the dangers of high pulse rate.
I ride a bike and have done since diagnosed 5 years ago.
I’m still alive but I can’t ride hills very well anymore and resort to walking because it’s pretty frightening feeling my Heart pounding....,,
Common sense.
By the way my Doctor tells me my offspring ( daughter) should be tested but she ( daughter) declines wishing not to know.
Enjoy life the best you can your way,,,
John

softlips
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Re: Long QT Syndrome Heart Disease.

Postby softlips » 17 Jun 2019, 3:29pm

landsurfer wrote:Seeing the cardiologist on the 5th August.


You should cease cycling until you’ve seen a cardiologist!

Who diagnosed the Long QT Syndrome?

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Paulatic
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Re: Long QT Syndrome Heart Disease.

Postby Paulatic » 17 Jun 2019, 3:41pm

horizon wrote:Good explanation here (not for OP whom I presume knows all this stuff):

https://www.nhs.uk/conditions/long-qt-syndrome/

Still didn't say what QT stands for though!


Wave length https://en.wikipedia.org/wiki/QT_interval
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Re: Long QT Syndrome Heart Disease.

Postby Bonefishblues » 17 Jun 2019, 3:57pm

softlips wrote:
landsurfer wrote:Seeing the cardiologist on the 5th August.


You should cease cycling until you’ve seen a cardiologist!

Who diagnosed the Long QT Syndrome?

The doctor who told OP to keep cycling, perhaps?

landsurfer
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Re: Long QT Syndrome Heart Disease.

Postby landsurfer » 17 Jun 2019, 4:57pm

Bonefishblues wrote:
softlips wrote:
landsurfer wrote:Seeing the cardiologist on the 5th August.


You should cease cycling until you’ve seen a cardiologist!

Who diagnosed the Long QT Syndrome?

The doctor who told OP to keep cycling, perhaps?


The doctor was quite direct ... "don't stop cycling" ....
He then prescribed me a GTN spray and booked me into the cardiologist ....
I rode 50 miles this weekend, uphill, down dale, farmland and forest without any issue ....... but on the return home i sit in a seat and am asleep in seconds for about 30 mins .... then on with the day ...
Be a do'er, not a watcher. Be a Sceaphierde, not a Sheep.
Mike Hall, Jenny Graham .. Respect. .... The Road Goes On Forever !

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Re: Long QT Syndrome Heart Disease.

Postby Bonefishblues » 17 Jun 2019, 5:24pm

landsurfer wrote:
Bonefishblues wrote:
softlips wrote:
You should cease cycling until you’ve seen a cardiologist!

Who diagnosed the Long QT Syndrome?

The doctor who told OP to keep cycling, perhaps?


The doctor was quite direct ... "don't stop cycling" ....
He then prescribed me a GTN spray and booked me into the cardiologist ....
I rode 50 miles this weekend, uphill, down dale, farmland and forest without any issue ....... but on the return home i sit in a seat and am asleep in seconds for about 30 mins .... then on with the day ...

Good on you. I'm managing a double-header of heart conditions quite (un)happily!

softlips
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Re: Long QT Syndrome Heart Disease.

Postby softlips » 18 Jun 2019, 3:32pm

Bonefishblues wrote:
landsurfer wrote:
Bonefishblues wrote:The doctor who told OP to keep cycling, perhaps?


The doctor was quite direct ... "don't stop cycling" ....
He then prescribed me a GTN spray and booked me into the cardiologist ....
I rode 50 miles this weekend, uphill, down dale, farmland and forest without any issue ....... but on the return home i sit in a seat and am asleep in seconds for about 30 mins .... then on with the day ...

Good on you. I'm managing a double-header of heart conditions quite (un)happily!


The potential issue is that the arrhythmias induced in Long QT syndrome are often caused by exercise. It is one of the causes of seemingly healthy people dropping dead when playing sports. Unless the doctor saying to keep on exercising is a Cadiologist or is a GP with a special interest in cardiology I’d take the advice with a pinch of salt.

Bonefishblues
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Re: Long QT Syndrome Heart Disease.

Postby Bonefishblues » 18 Jun 2019, 3:56pm

softlips wrote:
Bonefishblues wrote:
landsurfer wrote:
The doctor was quite direct ... "don't stop cycling" ....
He then prescribed me a GTN spray and booked me into the cardiologist ....
I rode 50 miles this weekend, uphill, down dale, farmland and forest without any issue ....... but on the return home i sit in a seat and am asleep in seconds for about 30 mins .... then on with the day ...

Good on you. I'm managing a double-header of heart conditions quite (un)happily!


The potential issue is that the arrhythmias induced in Long QT syndrome are often caused by exercise. It is one of the causes of seemingly healthy people dropping dead when playing sports. Unless the doctor saying to keep on exercising is a Cadiologist or is a GP with a special interest in cardiology I’d take the advice with a pinch of salt.

You should probably state your credentials to advise.

landsurfer
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Re: Long QT Syndrome Heart Disease.

Postby landsurfer » 18 Jun 2019, 4:41pm

Bonefishblues wrote:
softlips wrote:
Bonefishblues wrote:Good on you. I'm managing a double-header of heart conditions quite (un)happily!


The potential issue is that the arrhythmias induced in Long QT syndrome are often caused by exercise. It is one of the causes of seemingly healthy people dropping dead when playing sports. Unless the doctor saying to keep on exercising is a Cadiologist or is a GP with a special interest in cardiology I’d take the advice with a pinch of salt.

You should probably state your credentials to advise.


Thank you all for your concern but lets not fall out chaps ...
The advice to keep cycling was given by Dr Wajid A Syed, the practice cardio specialist.
If the advice had been given by Dr. Chandra the ortho specialist i may not be so comfortable about it .... although he is a Cyclist with a capital C.
Be a do'er, not a watcher. Be a Sceaphierde, not a Sheep.
Mike Hall, Jenny Graham .. Respect. .... The Road Goes On Forever !

softlips
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Re: Long QT Syndrome Heart Disease.

Postby softlips » 19 Jun 2019, 8:23am

Bonefishblues wrote:
softlips wrote:
Bonefishblues wrote:Good on you. I'm managing a double-header of heart conditions quite (un)happily!


The potential issue is that the arrhythmias induced in Long QT syndrome are often caused by exercise. It is one of the causes of seemingly healthy people dropping dead when playing sports. Unless the doctor saying to keep on exercising is a Cadiologist or is a GP with a special interest in cardiology I’d take the advice with a pinch of salt.

You should probably state your credentials to advise.


34 years working in cardiology / cardiac surgery, currently specialist in structural heart disease, but spent several years in electrophysiology advising on the treatment of Long QT syndrome amongst other things (but this is over ten years ago so I wouldn’t class my knowledge in this subject as current).

Long QT can be genetic in which case it’s obviously a permanent issue and needs managing to mitigate the risks. Or, it can be caused by certain drugs (or conditions) in which case removing the cause will correct the long QT.

But my advise is still the same, no strenuous exercise until seen by a Cardiologist or better still an Electrophysiologist.