CPVT

Question

Does anyone else have CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia)?

Couragous · Answer

I have been diagnose with CPVT the first of March 2012. The EP Cardio doctor done a EP study on me, after I have failed a stress test. I haven't gone for my genetic testing yet. I hope to have it done soon. My arrythmias are all over my heart. My heart beats in more than one chamber, it beats in all of my chambers. Yes it is SCARY. I plan on getting both my daughters tested. I am on Nadalol ( Beta Blocker) and on flecainide. I also have to take a anti panic medicine to keep me calm. It is like a fighting battle for me, the beta blocker drops my BP 80/54 & sometimes even lower. I am constantly feeling drained, I can't do any light duties without feeling like I am going to pass out. It has been hard, but I believe that my doctor has me on the right track.  I am 41 and just now was diagnosed with this condition.  My symtoms were extreme fatique, syncope, and simple things like bathing was a big chore.  Make sure you have a good doctor, one that you can trust. This is nothing to take lightly.

Mom2four85 · Answer

is_something_wrong....you and me both :P  and i don't suffer panic attacks lightly

is_something_wrong · Answer

Please don't pull this awful post up :( CPVT is the only arrhythmia I'm like SERIOUSLY scared of! It's a terrible arrhythmia, and it's not visible on any test except genetic testing. I'm about to get a panic attack right now..

jingles29 · Answer

Familial cpvt runs in our family however it was not diagnosed until I lost my brother 25 yrs ago and my 13yr old sister 5yrs ago. All our family went through test after test that any cardiology unit provides from wearing monitors to running on treadmills. My own daughter never had symptoms never was unwell until 5yrs ago when she collapsed. She spent ages in hospital and it was thought that an icd should be fitted. Our consultants worked extermely hard until they decided to send blood samples of the siblings and parents of the deceased to a dr. petorri in italy(these tests are not on nhs).after 10mths it was discovered that family members did indeed have cpvt. This is an awful disease that has killed otherwise fit and healthy young people. I have been fit all my life but learned that I have cpvt but 5 mths ago I passed out very suddenly not doing any exercise and was successfully resusitated. I since have had an icd fitted and take regular bisoprolol asmany consultants are discovering that whilst beta blokers do an amazing job at protecting people with other conditions that many cpvt sufferers require an icd also. Cpvt is extremely rare and I have the best consultant in the cardiology field. Please do not stop at what drs say every1 knows their own body. Life is a wonderful thing llive each day as it could be your last and thankyou my beautiful bro and sis for saving my ow and my precious daughters life

is_something_wrong · Answer

To you who are diagnosed with CPVT:

1. How did you get diagnosed?
2. When did you get the first event of dizziness or fainting?
3. What is the warning signs of the VT? Several PVCs during activity?
4. Before medications, did you always get arrhythmias (PVCs or VT) during exercise?

I'm still a little afraid of this disease, though I've been diagnosed with PACs due to high adrenaline levels, and my runs during panic with exercise are probably supraventricular (never captured on EKG). My stress test got up to 210 BPM in sinus rhythm, without a single PAC or PVC. I know I'm probably too afraid of this :(

Delz · Answer

hey, I have CPVT too, was diagnosed with it in 2005. Since then i have been on quite a few medications, some helped a bit and others just made me constantly drowsy. Late last year i heard about a drug called Flecainide which is an anti arrhythmia. The drug is supposed to control the CPVT very well. 

There have been 2 cases of patients with CPVT who have tried the drug. The first was unable to get out of bed prior to taking it and now both are able to live normal lives. I have been on flecainide for the past 8 months and i have felt much better than i have in the past. Still not 100% so it seems it works better for certain people. I hope anyone that hasn't heard about this finds this helpful, i know i was excited when i first heard about this and convincing my doctor to try the medication was the best thing I've done. Good luck to anyone else CPVT!

Ratha110 · Answer

hi i have CPVT this disease is really rare,here are some tips you can use.
1.if she fells bad and dizzy tell her to lie down,dont panic just talk to her .then if she unconshies call 911 you have 5 mintes to save her.
2.tell her that she is normal make shoure she fell normal.
3. it would be a good idea if you tell her new friends ,on the 1st or 2endplay date about her disease.
4.dont be scared.
i have a defibrilator my mom and dad did lots research.

Hope this helps you and your daughter.

Girl  with CPVT.

Redheadmommy · Answer

We just found out my daughter, who will be 3 next month, has CPVT.  She has a portable defibrillator at the moment!  She will most likely need an ICD in the next few years!  Still trying to learn all I can about this disease!

Ratha110 · Answer

Hello i have CPTV and an ICD so does 1 of you have a ICD ? 

calling 4 help .........

khearts2 · Answer

I used to have two devices, a pacemaker and an ICD.  Now I have a combined device.  I was diagnosed at 7.

jetchicky · Answer

I have CPVT. I've had it since I was about 10 years old and recently was outfitted with the ICD.

Jerry_NJ · Answer

After making my post I went to your profile and read the provided information.  I see there you do have an ICD/Pacemaker.  I understand that gives you full-time protection against a sudden heart stop.

Jerry_NJ · Answer

Sorry to read you have deal with CPVT.  Are you considering a Implantable cardioverter-defibrillator?  From the little I know about CPVT it seems you best protection.  I don't know if this is something a young person can "grow out of", I hope so.