CPVT

Posts from Jan. 1, 2009 to Dec 31, 2009

Moderators: Suzanne, ~guin

kellie
Posts: 12
Joined: June 10th, 2009, 5:40 pm

CPVT

Post by kellie » June 10th, 2009, 10:21 pm

I my name is Kellie and I have CPVT.
I would love to speak to anyone that has this condition.
Cheers
Kellie

Rebecca
Posts: 139
Joined: May 25th, 2009, 3:54 pm
Location: Ohio

Re: CPVT

Post by Rebecca » June 10th, 2009, 10:31 pm

Welcome to the board. I don't have that condition but I am more than sure someone here will be able to understand what you are going thru. They are very good here with help!!!
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming – "WOW – What a Ride!" "With a marguarita would be best!!!"

User avatar
Ozchrissy
Posts: 7266
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: CPVT

Post by Ozchrissy » June 10th, 2009, 10:51 pm

Hi Kellie, I am in Bendigo, I don't know anything about CPVT, but I have an ICD with a biventricular pacer. You will find someone on here I hope who is able to help you, or you may be 'unique' to our site. Either way you will find a lot of support, there are people on here who have their Devices for many different reasons, but we have one thing in common, that we do expereince the ups and downs of heart disease and we are able to come onto this wonderful site and obtain support and genuine guidance and empathy. This site rocks.

Welcome Kellie,

Chrissy
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

User avatar
reneemj
Posts: 239
Joined: June 10th, 2008, 10:11 pm
Location: San Diego, CA
Contact:

Re: CPVT

Post by reneemj » June 11th, 2009, 12:25 am

Hi Kellie,

I haven't been tested for CPVT yet but they are in the process of getting it done. This is what my EP thinks I have. I've had very random boughts of VT since I was 31 - the no rhyme or reason kind. But things have been pretty good lately (crossing eyes and fingers) :)

Let me know if you have any questions for me.. :)

You can message me or email if you'd like
Renee
Renee

User avatar
Clare Sidey
Posts: 72
Joined: February 12th, 2009, 5:40 pm
Location: Duki, Chesire, England
Contact:

Re: CPVT

Post by Clare Sidey » June 11th, 2009, 2:40 am

reneemj wrote:But things have been pretty good lately (crossing eyes and fingers) :)

Renee
Hehe! That made me titter!

Welcome Kellie :)

Sorry for my ignorance but may I ask, what is CPVT?

Hugs
Clare
No ICD, daughter of Pete Sidey (ICD)
:runn:

kellie
Posts: 12
Joined: June 10th, 2009, 5:40 pm

Re: CPVT

Post by kellie » June 11th, 2009, 3:15 am

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.
Cheers
Kellie

*karenb*
Senior Member
Posts: 589
Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK

Re: CPVT

Post by *karenb* » June 11th, 2009, 7:02 am

Hi Kellie,
I have CPVT too. It was diagnosed in 2003. It is very, very rare (which might be because most people die very young and without being diagnosed - survivors like us are a very elite group!! :D )

You asked how can anyone avoid adrenaline - well, as you concluded - no-one can which is why an ICD is essential in CPVT - drugs don't necessarily work. However.....

My cardiologist, who is a world renown specialist in cardiac arrythmia has given me guidelines: no alcohol, no chocolate, no alcohol, no strenuous exercise, no swimming (its a trigger for CPVT - no-one knows why :roll: ) and an avoidance of emotional stress and those situations that you know trigger arrthmia for you. For me that includes big crowds, noisy environments, late nights, fatigue, large meals, arguments...

Others may tell you that they do all of those things...but, they may not have the same condition, they may be willing to take risks, they may not actually feel ill as a result. I do sometimes have some chocolate (a couple of squares) or a glass of wine, but its my choice and I know full well that I'll feel less than great....but when were we ever totally sensible?! My cardiologist has also said that we have lives to lead, so if you want to 'indulge' a very little then go ahead.

The other 'unique' thing about CPVT is that an ICD may not always save the person. The ICD shock itself will trigger massive surges of adrenaline which lead to more arrythmia and there has been a couple of cases of the ICD being unable to stop the VF as a result of this cycle (unique to CPVT). I'm telling you this because, again, a lot of people justify doing risky stuff by saying "My ICD will save me anyway". According to my cardio, avoiding triggers is essential because of this problem in CPVT. People with CPVT may also need more anxiolytic and pain medication and general anaesthetic for surgery (including ICD implant/changes) because of the extreme effect of anxiety on the heart. Anxiety affects everyone's heart, but in CPVT it is especially dangerous...

However, I survived to 38 without a cardiac arrest, have never been shocked since implant and live a reasonable life: I work fulltime and try and enjoy life. In that respect I'm a lot better off than a lot of people!!
Good to meet you by the way and feel free to PM me anytime!
Karen
CPVT
First ICD 2004.
Current ICD implanted 09/06

kellie
Posts: 12
Joined: June 10th, 2009, 5:40 pm

Re: CPVT

Post by kellie » June 13th, 2009, 1:19 am

Hi Everyone
I am so happy that I found this site so I can connect with people that understand the stress and worries of having an ICD.
It was great hearing from you karen (karenb) as I know CPVT is rare. It was also interesting to hear that some of the situations that cause me fear like crowds, noise and the big one for me arguments are situations avoided by yourself. I thought I was just going crazy.
I am very interested if you do not mind discussing what medication that you are taking?
I know you said I can PM you but I maybe alittle slow on this computer stuff but I am not sure how to do that.
I hope all goes well for you renee (reneemj) and your testing results do not take too long.
Thanks again for everyones welcome and well wishes.
Cheers
Kellie

*karenb*
Senior Member
Posts: 589
Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK

Re: CPVT

Post by *karenb* » June 13th, 2009, 2:01 am

Hi Kellie,

"Going crazy" - oh yes! Before I was diagnosed I saw lots of doctors who told me that I was just "anxious" and "oversensitive"! I've still got the problem of other people thinking that I'm exaggerating or being a misery because I avoid big, noisy social events!

In terms of medication I'm only on bisoprolol 5mg (twice a day). The drug of choice is an old one called Nadalol, but it made me feel so ill I was changed to bisoprolol. I'm fine on it and it is a very low dose because otherwise my BP drops too low and I end up passed out..
What are you taking?

Karen
CPVT
First ICD 2004.
Current ICD implanted 09/06

kellie
Posts: 12
Joined: June 10th, 2009, 5:40 pm

Re: CPVT

Post by kellie » June 13th, 2009, 3:40 am

Hi Karen
I have 4 noten (atenolol), 2 isoptin (verapamil) and now 2 tambocor (flecainide) per day.
Luckily I have a very high tollerence with no side effects. I have been on the atenolol since I was about 10 years old (treated then for long QT) and then started the verapamil approximately 2 years ago when diagnosed with CPVT. The flecainide I have only been taking for 4 weeks since reading an article on the interent about research into CPVT. Majorly crossing fingers as I have had a few difficulties with my ICD giving "therapy". My professor was not even aware of the research being done.
I also have a separate pace maker that was implanted before diagnosed CPVT and it is amazing how basically treatment for alot of heart conditions like long QT is the same.
Hoping to talk again soon
Kellie

*karenb*
Senior Member
Posts: 589
Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK

Re: CPVT

Post by *karenb* » June 13th, 2009, 12:36 pm

Hi Kellie,
Yes, flecainide, I'm going to see my cardiologist soon and will ask what he thinks... I wondered whether you have any trouble with lots of pvcs/weird feelings and whether the flecainide helps?

Karen
CPVT
First ICD 2004.
Current ICD implanted 09/06

User avatar
gvn
Posts: 11
Joined: April 16th, 2009, 7:37 pm

Re: CPVT

Post by gvn » June 13th, 2009, 1:46 pm

I hadn't heard of CPVT before, but my VT has only shown up under heavy exercise. I discovered it by surprise when taking a treadmill for a wellness exam. The doctors did every study they could think of and never found any cause for it. I have an ICD because I went into vfib during an EP study. Is there a specific test for it?
Gavin
Idiopathic Ventricular Tachycardia
Medtronic Virtuoso DR (dual chamber)

kellie
Posts: 12
Joined: June 10th, 2009, 5:40 pm

Re: CPVT

Post by kellie » June 13th, 2009, 5:50 pm

Hi Karen
I had a period of bliss for approx 10 years when I thought I was all sorted with long QT and treatment with no incidents. Then when I moved states and changed professors he believed that it was possible that I did not have long QT. Of coarse I was adament that was not the case. I then had the ICD implanted and it started to give "therapy" (three storms in a matter of 2 weeks) it was then we realised I was just not aware of the feelings of a fast heart as I said it was complete bliss. So therefore (long story sorry) I am not the one to ask about strange feeling as I believe because I have never known any other way to feel so I am ignorant to the feelings but now if you can imagine I am super sensitive and almost talk myself into not feeling "normal" when I panic that all is not well. yehhh

Hi Gvn
The genetic test is the only true test that I am aware of. Please ask your doctor about CPVT as it is rare and therefore not considered very often. Best of luck with everything.

Cheers Kellie

User avatar
ladyheart
Posts: 547
Joined: June 13th, 2009, 2:41 am
Location: St George UT, USA
Contact:

Re: CPVT

Post by ladyheart » June 14th, 2009, 4:10 am

So have any of you with CPVT lost consciousness and gotten shocked back since receiving your ICD? Do you get "warning" feelings and if so, what do they feel like? This is sounding familiar and I am going to check with my doctor about it.

Thanks
Lori
St. George, UT
Lori
Idiopathic Cardiomyopathy & CHF 1996
Mitral Valve Replacement 1997
first ICD 2005, Guidant
second ICD 2010, St. Jude
Sudden Cardiac Arrests: 1 in 2005, 10 in 2009

*karenb*
Senior Member
Posts: 589
Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK

Re: CPVT

Post by *karenb* » June 14th, 2009, 4:51 am

Hi gvn & Lori,

Although some CPVT is linked to genetic abnormality, not all have been! There are several different genetic abnormalities associated with CPVT, but there are people with CPVT without the 'obvious' markers. Therefore, the main diagnosis is examining the ECG from either a 24 holter monitor recording or an exercise stress test.

A heart beat is characterised as PQRST, with each letter signifing a specific event in the heart beat. In CPVT
there is a very abnormal pattern of T wave and an 'upside down' QRS that is characteristic of CPVT.
Exercise/strong emotion is when symptoms first appear. I have always had arrythmia during and after exercise and upset, but no one thought it was important until I saw my current cardiologist!

It is underdiagnosed because it is so rare - estimates are around 1:10000. Long QT is 1:7000. There are only around 40 cases in the literature available to clinicians. It is therefore probably often missed....

Karen

Lori,
I haven't been shocked by my ICD. I do often faint, and do feel the usual dizzy, sick, very tired and just not well when my heart is 'messing about'. I can feel my heart and know when the arrythmia is there - which is often!!
CPVT
First ICD 2004.
Current ICD implanted 09/06

Post Reply