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Posted: June 14th, 2009, 4:58 am
Kellie, thank you for sharing. Keep the anxiety down, bliss is good
Posted: June 14th, 2009, 11:58 am
kellie wrote:CPVT (catecholaminergic polymorpic ventricular tachycardia) is a rare condition causing the heart to beat abnormally fast during exercise or stress resulting in dizziness, blackouts or even sudden death. It is believed that adrenalin is a main cause and I ask how does one avoid that?
Medication and ICDs are the main treatment so therefore as I have found out even emotional situations can result in shocks or the medical term "therapy" from the ICD.
Thanks to everyone responding to my first ever post it was great to hear from people soo quickly.
Has your Doctor put you on an adrenalin blocker? Maybe some of your medication addresses this - I know Coreg is a great adrenalin blocker for me.
Posted: June 15th, 2009, 10:07 am
Hi Kellie, Hi Karen, Hi everybody;
I have cpvt also. I'm sorry I don't seem to check-in to this site too often these days. So now there are three of us!!!
Karen and Guin and you, Kellie, are doing such a great job with info - I'm not sure what I can contribute.
I found out I had CPVT after I had a cardiac arrest 6 1/2 years ago. I have been genetically tested and I do not have the RyR2 mutation that causes the disease in about 40%of people with the disease.
I am on atenolol 25mg 1x daily. I tried verapamil in a study but didn't like it and it didn't help me much so I'm not on it.
I didn't know re no alchol or chocolate. Karen can you explain why we aren't supposed to have these?
I have had a couple of shocks but they were due to lead fracture. haven't had any therapeutic shocks. Am mostly not aware I have the disease or ICD - I mean i just forget about it.
At my last interrogation I was diagnosed with Atrial flutter. I was really upset. I didn't want an ablation or for it to degenerate into a-fib and there is a strong history of it in my family. I checked into a med I was on for asthma and it has a side effect of a-flutter so I went off it (with my family doctor's approval). I was interrogated 6 weeks later, at my request, and I had had 3 more episodes of flutter and then nothing for a month. I go in next month and hope I have had 0 episodes.
I tend not to feel the flutter, so I can't tell.
I think some people with cpvt have a-fib as part of the disease.
Finding out you have this is a lot to deal with Kellie. And if anyone has trouble keeping the cpvt under control due to meds stress, or because that is how cpvt manifests for them - then it can take a lot to live with it. I seemed to relax about it at about 5 years after the arrest.
i don't have much emotonal support in my life but this site was a life saver for me. You found the right place.
If there's anything I can help you with please ask away.
Hugs to all.
Posted: June 15th, 2009, 11:03 pm
Hi Everyone WOW so far 3 of us.
It is interesting what you guys have said about the genes testing as I was told it was the only way I would know for sure that I had CPVT and although the main gene is RyR2 they could find another gene relates to CPVT. So if it is the case that only 40% have CPVT through genetic history, genes testing it is not a clear answer. Therefore I am confused at whether the testing is worth the expense. At present they are studying in Australia but it is very new. I have an appointment to go and see the genetic counsellor early next month.
Guin: I think the atenolol that I am taking is a beta blocka and this addresses this (maybe)
Lori: As for the fainting, in my experience I have found the ICD gives "therapy" before I blackout. Although this is not fun, fainting isn't either. ( I use to faint before the ICD was implanted ).
Thanks again for everyones input.
Posted: June 16th, 2009, 3:51 am
Alcohol and Chocolate both contain stimulants that can trigger VT in CPVT, as can caffeine. As I said in an earlier post, I still have occasional 'treat' - it makes life more bearable when there are so many restrictions!
Theresa, I'm really sorry that you don't have much emotional support. That must be hard - you know that you can PM or email me anytime! This board is also great, a little beacon of sanity in the madness!
Kellie, my understanding is that although genetic testing is useful, it is secondary to other physiological tests because we're not sure if all cases are genetic...If its going to cost a lot of money you need to consider whether there is actually any benefit to knowing - you already know you have CPVT and that there is a risk of genetic transmission...
Posted: June 16th, 2009, 10:10 am
Thanks for the stimulant info Karen and thanks for the support.
Kellie, people can have their own personal mutation that causes cpvt or (I think Karen said) they may have no mutation at all.
My EP wants to do a cardiac biopsy on me to test the genetic material. we aren't going ahead with this because there is no one who would benefit from this in a medical way. If you go to Pubmed and put in this disease you'll see articles where you can read the conclusions paragraph and get more info re all of this.
Posted: June 16th, 2009, 6:22 pm
I can not thank everyone enough for the input and their thoughts. The information that I have received has been fantastic. I would like to ask Karen and Theresa some questions if they do not mind answering about their ICD settings as I am trying to get my head around it all. My ICD is set for "therapy" when my heart reaches 240 beats per minute as I have had alot of "therapy" and they tell me that they can not set it any higher. Although I still have had 'therapy" there have been quite a few close calls (monitor zone) so there would have been more. I hope you do not mind me asking and your answers would be greatly appreciated.
Posted: June 18th, 2009, 10:07 am
I'mset to receive a shock if i go above 207 beats per minute. They normally start people out at 188 beats a minute for 18 beats or more. I had some unnecesary shocks so they raised me to 207 beats/min.
My atria are being monitored and nothing is turned on right now. They generally increase meds until you aren't having symptoms - if i understand correctly.
Ihad 4 icd surgeries in 2 1/2 years cause the leads kept coming out or fracturing. I've been surgery free for 3 or 4 years?
Do you have ant questions?
Oh I'm 53 years old-arrested at 46/almost 47.
Posted: June 18th, 2009, 10:15 am
My device is set for 190bpm, and I've never had therapy other than being paced over 70% of the time. Fortunately my leads have been fine, I just had a battery failure after two years and had to have an emergency replacement as the unit stopped working altogether
I've had a couple of episodes of non sustained VT, both when I've been upset and stressed. Other than that I have thousands of extra beats, which I'm going to try flecainide for as recent research shows that it may help.
Posted: June 25th, 2009, 6:43 pm
You can add me to the list. I haven't browsed this board in a long time--the last time I did I still had the long QT syndrome diagnosis, but now have found a mutation in the Ryanodine receptor area for CPVT (new mutation so has not been confirmed that I really have CPVT). I'm on metoprolol XL but got tired of the shortage so I'm changing to nadalol, which may be a better beta blocker for this condition. Wasn't symptomatic until I turned 40 and had an ICD placed. Have had 2 episodes of ventricular fibrillation since then (during the last 5 years) with absolutely no warning. I don't restrict my intake of chocolate, caffeine (but am not much of a coffee drinker anyway) and am about to run my first half marathon since my first event. None of my events have been secondary to stimulant intake, strenuous exercise or emotions (but I've been cold every time).
It's always nice to know we're not alone in this!
Posted: June 27th, 2009, 10:10 am
Welcome to the cpvt 4. Actually I think there are quite a few of us out there. I know of someone else in the city I live in and there was someone in a small town nearby but hers was so bad they did a heart transplant on her.
I don't remember having upset or anything when I arrested but I was keeping my stress bottled up and I've always thought that's what did it.
Yes I agree that it is great to know others with this disease.
I think I said in a previous entry that I am mostly not aware I have this disease. I've been overdoing it lately and have had either some massive PVCs or my heart really did exit and re-enter my body within a few seconds LOL.
I have one more stressful day and then things will settle down again.
Nancy, you said you got tired of the shortage on metoprolol - what do you mean by shortage?
I hope you are having further testing to confirm the diagnosis. I'm really glad you have the treatment already.
Please keep in touch and take good care.
Posted: July 3rd, 2009, 6:07 pm
The FDA had a problem with how a couple of the manufacturers made the generic Toprol XL, so that caused a shortage of generic metoprolol ER tabs. I could only get one month filled at a time and only the brand Toprol XL, which cost 3-4 times more since my insurance covers less for brand name (this has changed recently and now they are covering brand Toprol XL because of the shortage). I'm still going to change to nadalol since I had an Vfib event while compliant on metoprolol. Also wondering if I should consider sympathetic denervation if I have any more events.
Posted: July 4th, 2009, 1:48 am
Its good to meet you. Nadalol is the betablocker of choice, but I couldn't tolerate it. It dropped my pulse down to 25bpm (scary, although by that time I wasn't conscious) and BP down to unrecordable (this was just before I had my ICD).
My CPVT is definately exercise, stress, caffeine, alcohol and chocolate related which is a real bummer!!
Posted: July 4th, 2009, 9:17 am
Nancy, have you run the marathon yet? You must keep in pretty good shape. And of course you know about warm-ups and cool downs to control the adrenaline being introduced and exiting the body.
Nancy are you a doctor or nurse - you sound so knowledgeable. Is sympathetic denervation what happens when you have an ablation? They will only do that here in the ventricles if it's a last ditch effort.
HI Karen - have you found anything to replace chocolate that works for you? A cuppa tea seems to take care of a lot of things for me. I need to lose weight and find it sooo hard to do while on beta blockers. Does anyone have any tips on this (other than running a marathon LOL).
Posted: July 4th, 2009, 1:12 pm
It was only a half marathon and it was last Saturday--when I saw the full marathoners veering off for another 13 miles, I was so glad I wasn't going with them! I stupidly tried switching to nadalol before the race and had problems training, so I switched back to metoprolol, but now that the race is over, I'm going to try out nadalol again--hope I tolerate it.
Sympathetic denervation is when they surgically cut the part of the sympathetic nervous system that regulates the heart. It's used for those of us who don't tolerate beta blockers or continue to have events while on beta blockers.