Search found 12 matches

by kellie
July 25th, 2009, 5:11 pm
Forum: 2009 Forum Posts
Topic: is anxiety normal?
Replies: 16
Views: 1449

Re: is anxiety normal?

Hi Everyone Brenm your story was like a page from my personal book. Anxiety sucks. I was the most care free, happy, easy going person you could meet. You would never know I had a heart condition. Then I had my ICD implanted. 3 groups of shocks in 10 days of implantation and anxiety raised its ugly h...
by kellie
July 25th, 2009, 4:34 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

Hi Everyone It has been a while since I have checked the forum as I know it may sound crazy but I am trying not to think about it all and enjoy life. But I woke up this morning needing to touch base. The elite 3 grows to 4 (hopefully more cpvters will find us). I wish you well Nancy. I am sooo impre...
by kellie
June 16th, 2009, 6:22 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

Hi 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 "th...
by kellie
June 15th, 2009, 11:03 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

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 thro...
by kellie
June 13th, 2009, 5:50 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

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 t...
by kellie
June 13th, 2009, 3:40 am
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

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 ag...
by kellie
June 13th, 2009, 1:19 am
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

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, nois...
by kellie
June 11th, 2009, 4:52 pm
Forum: 2009 Forum Posts
Topic: WELCOME Kellie....
Replies: 22
Views: 1558

Re: WELCOME Kellie....

Hi everyone I can not tell you how great this is to talk to people that understand. John I believe the drug in question is an old drug very commonly used but even the professors do not understand how it is so effective with CPVT. Apparently it was by chance they trialed it on the rats with great suc...
by kellie
June 11th, 2009, 3:28 am
Forum: 2009 Forum Posts
Topic: WELCOME Kellie....
Replies: 22
Views: 1558

Re: WELCOME Kellie....

Hi
I am from Benalla a country town in north eastern Victoria.
I have resently started on Flecainide and am still on beta blockers and verapamil.
Thanks for your responses.
Cheers
Kellie
by kellie
June 11th, 2009, 3:15 am
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

Re: CPVT

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 ...
by kellie
June 10th, 2009, 10:21 pm
Forum: 2009 Forum Posts
Topic: CPVT
Replies: 34
Views: 17731

CPVT

I my name is Kellie and I have CPVT.
I would love to speak to anyone that has this condition.
Cheers
Kellie
by kellie
June 10th, 2009, 10:13 pm
Forum: Main Forum 2019
Topic: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.
Replies: 1169
Views: 408741

Re: .·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Hi my name is Kellie and I live in Victoria Australia. My life revolves around my partner Simon, my horses and my dogs. My new professor diagnosed me with CPVT and have had an ICD implanted for 4 years. Shocks what fun!!!! In the past I have been treated for epilepsy and long QT. I am now trialing a...