Pacemaker for 8 months and palpatations

I am a 23 year old male and I had a pacemaker implanted March of 2013 due to cardiac pauses of up to 18 seconds causing me to black out. Since my surgery I have had many episodes where I feel my heart racing and chest pressure, similar to what I experienced in my blacking out episodes I had prior to the implantation but without the actually syncope.

In order to determine the cause of all this my cardiologist has played with the setting which would record episodes above the set heart rate. We started at 194 BPM and missed an episode because it was below that point...then we went to 150 BPM but that of course did not record anything because of my daily exercise.

I decided to see an electro physiologist and had my rate drop response removed and hope that everything would be solved. I have had several episodes over the past 48 hours and went in today and discovered he had set the pacemaker to keep record of episodes over 240 BPM!!!! During my first visit I explained to him what the previous Dr. had done in order to capture these events but he clearly did not listen then nor the 2nd time seeing him. He insisted I had a panic disorder and essentially refused to work with me anymore and push me to see a GP. I had an event monitor ordered for me, which is what I used to determine my cardiac pauses before the implantation, and I hope this will find the solution to the problem.

I am looking for any advice or experiences that can be shared because no one seems to want to work this out with me...I am pretty sure what I am experiencing is not a panic attack because I don't have feelings of terror except for the excruciating pain I feel in my chest.

6 Comments

extra info

by jd1990 - 2013-11-21 06:11:49

Also no sweating or trembling....just chest pain and pressure.

response

by jd1990 - 2013-11-21 07:11:28

I actually called right after one of my episodes this morning and saw the doctor at 1 pm. I gave him pretty much a specific time as to when they happened but they did not appear on the monitor because he set the pacemaker to only record events over 240 BPM. I requested an event monitor so when I have an episode I press a button and it will record the event no matter the heart rate. Prior to this doctor I had an episode when I was sitting watching TV and my Mother, a nurse, counted the heart rate to be around 170 or so...which is not normal when sitting down in a relaxed environment.

Hmmm 23 eh?

by Theknotguy - 2013-11-21 07:11:36

Sometimes youth gets discounted because they are young. People don't always see how life experiences have matured you beyond your years. Very frustrating.

I worked in a tech shop and one of my best young techs gave the customer the correct answer to the customer's question. I was about twice as old as the young tech. So the customer asked me the same question and I gave the same answer. The customer believed me instead of the young tech. The only difference was the age. You may have the same problem.

Question is if you have documented your symptoms? Perhaps if you showed up with a logbook and some analytical work they may take you more seriously.

That takes the discussion away from your personal feelings and goes to some impartial data. Just documenting dates and times gives your statements some impartiality. At the worst case it may lead your cardiologist to putting on a monitor which would lead to even more impartial data.

Hope this helps.

Theknotguy

response

by jd1990 - 2013-11-21 08:11:10

During my 1st visit with the electro physiologist she mentioned that to him but as I said I think he has no intention of helping me. During my visit today I brought my younger sister with me and even she got the feeling that they either didn't care or they didn't know what to do and as opposed to admitting it they pegged the blame on something else in order to not discredit themselves. Next time I have an episode and have the event monitor I should have some evidence as to what is going on. I have been researching panic attack symptoms and while some of them match cardiac complications I intuitively know that is not the underlying issue....the pains I am experiencing are similar to what I had prior to the pacemaker implantation and I get the chest pain well before anything else....I told the doctor that it feels like I am dying and that might have encouraged his panic attack diagnosis but when you have a lot of pressure on your chest what am I supposed to say??? This whole ordeal has been the same, fighting for answers to my questions and no one seems to take my age seriously.

So if your Mom's a nurse...

by Theknotguy - 2013-11-21 08:11:27

I'd have her get on the phone and start telling everyone you're not dreaming it up. Sometimes screaming and yelling gets things done.

Can I give you a few of my years?

by BillMFl - 2013-11-21 10:11:43

I have about 48 more than you, but my symptoms and experiences are similar to yours. I got my first pacemaker in 2002 and am now on my second. My initial dx was SSS (sick sinus syndrome) with a pulse of just over 40. Never passed out but got dizzy, clammy and fatigued. The pacemaker (low rate of 60) has performed nicely. I pace almost entirely from the atrium and seldom if ever require V pacing. But, and and so many of us can say BUT, I have frequent though not lengthy episodes similar to what you describe although mine don't include any significant pain. Just a sharp piercing jab now and then. Some of the episodes are very chaotic. Others have a repetitive pattern. I am told they are not life threatening, but they are still quite uncomfortable. I have seen three Cardio's and one EP over the past 11 years. The EP wanted to do ablation (of course he would) one cardio agreed with him, another said they were both "pushing" a procedure I didn't need and my new cardio has me on a 30 day event monitor (I transmitted 3 events today). My personal conclusion is that pacemakers can only do so much and probably can't manage or treat many irregular rhythm problems. .But I would like a definitive answer as to what is going on just for peace of mind. Ablation is a big step that I don't want to take unless my symptoms get a lot worse. I really appreciate and understand what you are going through. I think if a cardio sees a nice steady sinus rhythm when you are at his office he tends to think we are lucky compared to most of his patients and its easy for him to think we are over reacting. Whats a little chest discomfort compared to his patients who have suffered ischemia or heart failure, etc. I have decided that when my 30 day trial is over, if I don't get a definite dx or some non invasive solution I am just going to do my best to ignore the queasy chest, thumping and bumping pulse, the gulping urge to cough, etc and just chalk it all up to my senile brain and my imagination and pretend it isn't happening. You are way too young for that approach and deserve a sympathetic ear from a cardio who takes you seriously. Be your own advocate, perhaps a young cardio who is not so accustomed to a waiting room full of severely ill heart patients will be more responsive. Try to be as factual as possible, remain calm and logical, down play the emotional aspects so they don't read you as histrionic. Good luck and keep posting your experiences.

You know you're wired when...

You always have something close to your heart.

Member Quotes

So, my advice is to go about your daily routine and forget that you have a pacemaker implanted in your body.