Hello Everyone, I am new to this club and have now realised how little I know about my condition and why I have my pacemaker. I was born with congenital hypertrophic cardiomyopathy of the left ventricle. Up until I had my 3rd child I never really experienced any difficulties with my condition until about 20 years ago. I started to get arrythmia and was commenced on Flecainide twice daily which seemed to keep the arrythmia at bay. When this stoppped being effective I had a pacmaker implanted as my cardiologist said that it would help stop the progression of the cardiomyopathy and stop my arrythmia. I have now had 3 devices implanted in the last 11 years and conitnue to take Flecainide 100 mg twice daily and 50 mg daily. I have been told th...

 

Hello! Last night my heart beated very fast. I woke up to have a rest and the HR became ok. I am wondering why it often does this during the nights.

The doctor ordered me betablockers but we later decided together that I do not have to take those because my HR has been ok.

I wonder how long period does the Metronics PM memory have data. Is there any devices available to read pm memory at home?

 

I'm 33 and getting myself mentally prepared for yet another med change. My EP doc swears this is the last one. If this doesn't work than it's a pacer for me, which I'm at peace with. (I've tried everything, except Amiodarone which I refuse to try because of the side effects.) My EP, who is wonderfully charismatic and skilled has decided not to do the AV Node ablation/pacemaker insertion unless I get a second opinion from another EP. This reassures me that my doc really does care about my wellfare. He just wants to make sure that he's not missing something since ablating my AV node is so final. So during my 3 day hospital stay (4 hours away from my hometown) for Tikosyn, my doc has arranged an EP consult with another doc. This will be the 2...

 

Not sure where to post this so I chose Conditions ...

Just a short update: Saturday will be 9 weeks since ICD install and I feel so much better now than I did at week 2 or 3 it is amazing. Last Friday I got to spend an hour with the PM tech and he made some adjustments which got rid of that winded feeling when I went up a flight of stairs.

For those not feeling right - keep learning, asking questions and being a pain. No one else is out there that is going to advocate for you.

Since I joined this club the abbreviations have given me fits, so here is a list that I have collected since joining.
It is not complete. I hope that it is accurate but review and comments welcome.

I will p...

 

Time for a mammogram. I've used the search engine to check out past messages re:others' experiences, but it seems that many of the responses can't be pulled up. So, once again, how did you all manage the mammogram issue? I've read some of the horror stories of fractured leads and all...kinda scary! My PM sits under the muscle and doesn't seem too far away from the top of the breast tissue. Unfortunately I'll have to have additional views on the left side d/t an increase in tissue density...so I'm especially wary of the angles that those plates will be coming at me! Thanks and I await your wise counsel, Carol

 

I take digoxin which in the past befor I got my pacemaker gave me terrible nausea. Since having the pacemaker I fing it very strange that I can tolerate it and do not get nausea. However I also take perindopril an ace inhibitor. When I start taking this I get a painfull pricking sensation, like having needles pushed into the surface of my skin. It starts in the extremities , toes and finger tips, and as time goes by it gets worse with the sensation travelling futher up my limbs until I cant stand it any more. I then stop the drug and gradually after about a month the sensation /pain fades away doing exactly the opposite until it is in my toes and fingertips until it vanishes completely. When I dont take the drug I feel much better, Howeve...

 

Yesterday I had my PM check/doctors appointmeny (finally!)
All went well. I was told I have asout 1 1/2 -2 years left in my pm, wich is good because that's what the said a year ago. My cardiologist is the one monitoring my warfarin/INR results. I asked him if he thought I'd be on it for life or could switch back to taking an asprin a day. (which was much easier) He wasn't sure and said he'd have to look at a video of a trnsecho that I had done a few years ago first but most likeley I'd have to stay on it. He said may one day they'll come up with something that works the same but won't need to all the testing. He understands that it's a pain to go for the testing regularly. It takes me about 15-20 minutes to get to the lab. It's not to...

 

Hi well at last had Tilt Table with GTN Provocation. First attempt the computer broke down. Ok stood for 20 mins absolutely fine no trouble then GTN and my heart rate went from a steady 88 to 200 and started to faint. It did feel exactly how I feel before I faint the doc who was there said that it looked to him as if I have not SSN or Hypersensitive Carotid but "Reactive and Reflective Tachycardia" Ummmmmm I have no idea what he meant but will see Cardiologist soon. On the way home I felt ok not brilliant but ok as I live so far from decent shop we decided to call in to get some things and as we were paying I fainted there was a nurse behind me and she grabbed me and did pulse and said it was easily over 200 I felt so ill but just wan...

 

My husband has been on Amioderone for two months. His doctor has suggested that he have an out-patient test to make sure that the amioderone does not interfere with his pacemaker/defib.'s performance. Apparently they change the setttings on the defib so that he will have an "incident" and the defib. will kick in. This test is only supposed to take ten minutes. Has anyone else ever experienced this? Please reply.

 

Just wanted to say thanks to Chiliman, and Janetinak, and especially Peter (who's responded before) who have helped ease my anxiety about AV Node Ablation. It certainly helps to hear stories from people who've been there. I seem to handle it fine, until my husband gets all worked up about it and asks all these questions. Then I get all twitterpated, confused, and doubtful. Thanks again. I'm sure when the time gets closer to insertion day, I'll be back on the message board again. Ya'll are great. Thanks bunches.

 

I'm headed towards an AV Node Ablation not unless some other divine intervention pops up in my doc's head for me to try. I'm really trying everything except Amiodarone which I feel is just too toxic for my 33 yr old body. I'm anxious as all get out about the possibility of AV node ablation, and doc (who's a total sweetheart) isn't really excited about it either. He wishes that he had more options for me. I wish it wasn't my decision. What happens if I go through with the AV Node Ablation, am totally pacemaker dependent, and the pacer quits working.? Will I just drop dead then? Gee, that sounds like a great choice. This is the biggest decision I've ever had to make in my entire life, and probably will forever be. I just don't know what to d...

 

My husband had blood work last week to determine if he has Congestive Heart Failure and we, of course, haven't heard any results yet. Maybe tomorrow or Tuesday?

Does anyone here have CHF and if so what is being done for the condtion?

He also has atria fib but actually doesn't feel when it is happening. It shows up just about everytime he as EKG.That is how the cardiologist found it.

He has been under the cardiologist's care for 3 years now.

Thanks for your help.

Margaret (PM FOR 3 YRS NOW)

 

My EP doc and I are running out of options for my irregular heart rate. (read my post-AV Node ablation below for more info)
I appreciate immensely my doctor's willingness to try everything possible before pacemaker implant, but now he wants me to try amiodarone. Yikes! The side effects for this drug, I believe, are not worth it, and it doesn't seem like a feasible option for me. After reading the serious side effects of amiodarone, I think I would rather just go ahead with the AV node ablation. Or else, do nothing at all and just live with a constant irregular heart rate of 130+. I just turned 33.

 

Hi

Since my dual chamber PM was put in at the beginning of February for second degree heart block just at night, I have been having thousands of ectopic beats when I am resting - PVCs. My settings have been changed several times and now I am on a 'guardian angel' setting - back up VVI at 35 bpm. So I am only sensed and paced in the ventricle - nothing in the atrium. This has improved the situation but not got rid of it. When I asked if these extra beats could be dangerous, he said "well they probably won't kill you"! Very reassuring!

My EP thinks these ectopic beats can be suppressed with a calcium channel antagonist but this runs the risk of prolonging the AV delay and increasing my pacemaker requirements.
<...

 

I have had irregular heart rhythms for 8 years now. Flutter, a-fib, SVT, atrial tach, v. bigeminy...you name it. All meds I've tried over the years have failed to manage my symptoms, and I've had 3 failed ablations with the last one resulting in phrenic nerve damage. My EP doc and I are running out of options, and I fear a AV Node ablation with pacemaker implant looms in my future. This will either be the best or worst thing for me. I wish there was a sure way of telling, but I know I can't continue living the way it is now. I'm 33 years old. My dream is to run a 5K

 

- HELLO EVERYONE,

WELL ITS BE SOMETIME SINCE BECKY AND I HAVE POSTED ABOUT DAD (BOOG). WELL HE IS DOING SOOOO MUCH BETTER! WE HAVE GOTTEN IN HIS NEW ICD AND DOING SO MUCH BETTER! I CANNOT NOT THANK YA'LL ENOUGH FOR ALL THE PRAYERS AND EXSPECIAL POOKIE, HARLEY, MARRYANNE FOR ALL THE LONG TALKS! WE HAVE HAD SUCH A JOURNEY WITH DAD , BUT I THANK GOD EVERYDAY THAT BOTH BECKY AND I AND MOM WAS ABLE TO WALK WITH DAD THROUGH IT. THIS YEAR WELL TODAY FATHERS DAY WAS VERY SPECIAL, BECAUSE WE ALMOST DID NOT HAVE DAD HERE FOR IT. DADS DOCTOR TOLD US IT WAS ABOUT THE QUILTY OF LIFE FOR DAD, BUT YOU KNOW THAT IS FOR ALL OF US! EACH DAY WE ARE NOT PROMISED NO MATTER WHO YOU ARE, SO IT GAVE ME A NEW MEANING ON HOW ...

 

hi everyone,my name is linda, my husband had a pacemaker and icd put in 6/21/06 he has alot of dizzy spells, also gets a upset stomach. ALOT. is this part of the meds or some thing else. we have talked to his dr. but no real help. can anyone help us ? thank you linda

 

I had the pacemaker inserted on June 4th....have my first doctor's appointment today...but at times feel out of breath after doing something....anyone have these symptoms...my pacmaker is set at 60...thanks vtlaney

 

hi there,

has anyone had experience with subclavian steal phenomenon? if so, what were your symptoms...i did find info on the internet but just wanted to talk to a real pertson who has/had it.

thank you
luckyloo

 

I recently got diagnosed with having asthma. I was wondering if anybody else has this and if it has messed with your heart from medications at all.
It is nice knowing that I am not crazy when I continue to say I am sob but it took having a big spell for a regular dr to tell me that he assumes I have had it for a while. Though, the inhaler that he gave me one of the side effects says it can raise your h.r. I was wondering if this has happened to anybody? Thanks!

Tammy