CPVT? LQTS?

[bluemoon20]

I'm 20 years old and since I was 3 years old I've had faints/mainly seizures. The first time it happened at 3 I had a temperature. Since then I've had a seizure at least every year, apart from once when I went around 2 years without one.

Since 3 I've had seizures randomly. However have also had one whilst running (twice) one was a seizure one was a faint, when I was on a trampoline, when on a bouncy castle, whilst sat on a bus, whilst sat eating a meal. I also had a seizure once when I was extremely scared and once when I was extremely upset but now they do occur randomly most of the time - I haven't had a seizure for a particular reason in a long time.

I asked my cardiologist recently about LQTS as I seem to have a lot of the symptoms and they sound scarily alike, and she basically laughed at me and said I don't have it, and refused my a stress ECG test.

I'm also EXTREMLEY worried about C
atecholaminergic Polymorphic Ventricular Tachycardia. CPVT. How high can a person with CPVT heart go? Mine goes to 145-150 when worried and 177 when in hospital once and I didn't pass out. Thanks.

I'm leaning more towards CPVT.
Any advice? I'm living in fear of a SCA.

[is_something_wrong]

While nothing is 100% certain (you cannot have an absolute guarantee that you don't have CPVT) a heart rate of 177 would very likely not be tolerated with this disease (it would cause a lot of ectopic activity).

[FileTrekker]

Actually, it depends on the cause of the high heart rate. It's not the heart rate that causes issues in CPVT, it's the catecholamines as the name implies.

[FileTrekker]

This is why a stress test actually only has a 20% sensitivity, it's not a useful test for CPVT. Only genetic testing can really rule it in or out.

[specialmom]

You sound like you know a lot about this. Do you have CPVT? How was it determined for you? How do they handle it medically now if you are diagnosed with it?

[Sk3510]

CPVT is a very rare genetic condition with a prevalence of CPVT is estimated to be about 1 in 10,000 people. Also, CPVT has traditionally been considered a childhood disease with most patients presenting with symptoms in the first two decades, with a median age at diagnosis of 15 ± 10 years. So first it is very rare, Second if you are over 25 then it is even more unlikely that you have it and last if no one suddenly died at an early age in your family then you have more chance to get hit by a truck crossing a road than having and dying from CPVT. Hope this helps

[bluemoon20]

hi, when my heart was at 177 I was hooked up to a monitor and they said my ECG was normal it was just showing inappropriate sinus tachycardia but it was normal - the high heart rate didn't make me seizure or pass out: are you saying this likely rules CPVT out? Thanks

[is_something_wrong]

A heart rate that high would likely cause arrhythmias in the setting of CPVT, yes. At least lots of PVCs. CPVT manifest with a specific type of VT known as bidirectional VT which may cause fainting (not necessarily seizures).

[Bromley]

They also have genetic testing for these disorders.

[bluemoon20]

My heart rate usually goes to 145 -177 with anxiety - would that have caused a seizure if it was CPVT? Thanks. It just seems my body can't handle adrenaline.

[is_something_wrong]

LQTS: Specific changes on EKG. A normal EKG rules out LQTS with high certainty.

CPVT: PVCs that increase with increased heart rate. Usually bigeminy with heart rates >130. Goes into polymorphic VT at high heart rates. Extremely rare.

But maybe you should get an implanted recorder to find out what's happening during a seizure?