No Diagnosis?

I just got a pacemaker implanted two days ago. I am still in the shock stage since I have been very healthy. I am quite overweight but shock the doctors every time they run tests because I am so "normal". No diabetes, slight high blood pressure but that's controlled with meds, no high cholesterol, etc.

Anyway, I've had fainting episodes in the past but most of them have had an explanation. Like the site of blood or shock over traumatic news. Two or three times there was no explanation and my fainting spell seemed more like a seizure. Each time the people around me rushed me to the hospital, tests were done and I was told I was fine and it was a fluke.

I have always had a fluttering in my chest off and on all day. My mother told me that I had an "innocent heart murmur" as a child but only one doctor has ever said anything about it. That was a couple of years ago and he said my heart had a mild misfire but it wasn't dangerous.

A few days ago I went two days without sleep and was under a great deal of stress. I ended up passing out 3 times and quit breathing and a pulse couldn't be found. I was taken to the hospital and every test under the sun was done. The doctor said that everything was normal except for a long QT something. That is the first time I've heard that before. He told me that he wasn't comfortable letting me go home so he admitted me for observation. FINALLY what I had experienced before actually happened when a Dr. could see it. My heart quit beating for 5 seconds and then again for 18. I guess I also quit breathing. Each of the last 4 episodes began with me having this horrible feeling of dread so after the first time I knew it was coming. I was rushed in for a temp. pacemaker and the next day a permanent one was put in.

The thing is... I don't have a diagnosis! I don't know why I went from fine to this in a matter of a few hours! I was told yesterday that my pacemaker is working almost constantly. How does this happen? My heart is healthy and not diseased, my arteries are perfectly clear and my Echo said that my EF # is 65 which I was told is perfect. Why would I suddenly need a PM?! I'm so confused and stressed and afraid! The only thing my discharge paperwork says is "Arrhythmia", "Syncope" and "18 second cardiac pause". I feel like "duh!" those are the symptoms not the diagnosis aren't they?! Isn't Arrhythmia what everyone has that gets a pacemaker? Doesn't that mean an unusual heart rhythm?

I'm sorry this is so long. I am the type that needs to understand every little detail and its making me crazy that I can't even google anything!

Thank you in advance for your help and patience.

13 Comments

Bradycardia

by Elleninminn - 2014-06-21 11:06:29

Pacemakers are usually implanted to control bradycardia (a heartbeat that is too slow) or to prevent the pauses you describe, which show up as a long QT (distance between those waves) on the EKG. You might also have a tachycardia such as atrial fibrillation. The pacemaker doesn't prevent fast or irregular heartbeats but does keep your heart from going above a certain rate. Most of us start out with settings of 60 bpm for the minimal rate and 130 for the highest. I'm just suggesting a possibility and don't mean to diagnose you. Ask the hospital for a copy of your record; they have to provide one.

Your situation sounds very similar to what I went through a year ago. My diagnosis was tachycardia-bradycardia. By any chance were you being given an antiarrhythmic drug when you felt the dread that accompanies heart pauses? (Awful! I felt those too, many times, and felt like blackness was entering my brain. A drug caused it in my case.) My heart and arteries are healthy too, but electrical problems can occur anyway.

It can be frustrating when doctors don't answer all our questions, but having the symptoms properly diagnosed and treated is the important thing. Don't be afraid to call your doctor for answers. Best wishes. I know it's hard to accept this sudden change, but you are safer now than before.

We Get It!

by NiceNiecey - 2014-06-21 11:06:36

Wow! Let me first say I'm proud and jealous that you have 10 kids!!! Amazing!

I have another friend that's an Orthodox Jew in Israel and she is about your age and also has 10 kids (2 still at home that are 16 and 8) and 20 grandkids so far. Unbelievable.

You sound a lot like me except that I'm 56 and only have 4 kids and one grandchild to date. Since your cholesterol is perfect, EF is great, no blockages, we call that not having an "plumbing issue."

What you probably have is HEART BLOCK. It is an electrical conduction problem and is not related to the plumbing. As simply as I can possibly explain it: there are "nodes" in the heart that send signals between the chambers. When one has heart block, those signals are not getting through. If the PM is working almost constantly, you may have Mobitz Type 2 Second Degree Heart Block OR you could be right on your way to COMPLETE HEART BLOCK. Mobitz Type 2 can very quickly turn into complete heart block. Once that happens, your PM will work 100% of the time.

Please try not to be afraid. Be thankful that God led you to a doctor and hospital that saw your heart was skipping beats for lengthy periods before you died of cardiac arrest. It's not a heart attack but if the signals can't get through the upper chamber(s) (atrium) to the lower chamber(s) (ventricles), you cannot survive it.

I'm only 6 months into this journey myself and I'm sure others will weigh in, too. I had never fainted but had very real feelings of my own mortality plus a lot of other symptoms I related to menopause, crazy mom syndrome, thyroid, everything but what it was: my heart's electrical system.

Please, please, please give yourself a few weeks (6??) to recover from this shock. I was under the impression that I should be able to walk out of the hospital feeling better than ever. Nothing could have been further from the truth! Remember: patience and time.

You can private message me if you'd rather. I'm so glad you posted; you're on the right website for help. You will soon realize how fortunate are to be in such good company with people that have been there and done that! And so many with more serious problems than us.

Hang in there, Friend. Read and learn on this site and you'll be armed for bear when you go in for your first checkup!
Niecey

Welcome!

by kmom - 2014-06-22 01:06:54

From one Utahan to another! Give yourself time to heal! Glad you found this forum! I found it last year when I was dealing with arrhythmia issues and just got my PM about 2 months ago. It took my dr. quite a while to find out what was really going on with me but so glad to have my new little friend! Please come back often, there is a lot of support here on the forum! Hope you get to feeling better soon!

Cardiac rehab ..why ??

by IAN MC - 2014-06-22 03:06:13

I know that Grateful Heart is a great advocate of Cardiac Rehab but I can't work out why you should need it. You sound healthy to me apart from the electrical heart problem which has occurred.

Here in the UK , cardiac rehab is usually only offered to people who have been debilitated by long standing plumbing problems. This is lifted from the British Heart Foundation website :-


""Who is cardiac rehab for?
Cardiac rehabilitation is available to anyone who has had:

a heart attack
a coronary angioplasty
heart surgery
some people who have angina or heart failure. "

{Having a PM installation is not classed as heart surgery)


As you don't seem to fit those criteria I can't think why you would benefit from it but maybe I'm missing something ! I'm sure that G Heart will enlighten me.

Best of luck

Ian




Cardiac Rehab....Why Not??

by Grateful Heart - 2014-06-22 05:06:05

Hi Ian,

I think every heart patient would benefit from Cardiac Rehab if their Doctor allows them to exercise. For some, it is starting them off on an exercise program they would not have started on their own. Great benefit if they stick with it, not to mention the confidence building it does for someone afraid to move after a PM or ICD implant.....confidence in the device. Many times there is an emotional component to healing as we read on this site all the time.

I haven't heard one person say Cardiac Rehab was a waste of time, but I have heard many at Cardiac Rehab and on this site say how much it has helped them.....including me. I'd say that's a benefit.

But since you are an evidence based kind of guy...

I took this off of the American Heart Association website:

*****************
Who needs a cardiac rehab program?

Many people of all ages who have heart conditions can benefit from a cardiac rehab program. You may benefit if you have or have had a:
Heart attack
Heart condition, such as coronary artery disease (CAD), angina or heart failure
Heart procedure or surgery, including coronary artery bypass graft (CABG) surgery, percutaneous coronary intervention (PCI), including coronary angioplasty (balloon angioplasty) and stenting, valve replacement, or a pacemaker or implantable cardioverter defibrillator (ICD).
******************

We all can't be fit and fab like you. :-)

Grateful Heart

Let me add...

by donr - 2014-06-22 07:06:22

...why it's good for some people. I don't know what your NHS provides for, but our system provides for three levels of rehab. I & II are conducted for people who have serious physical problems following heart surgery. Yes, there are guidelines along the same vein as yours. BUT if a Cardio feels strongly about the need for it following a PM implant, it can be justified.

Level I is conducted in the Hosp while a patient is still recovering from the surgery, so that is pretty much restricted to the cases you laid out. Stage II is conducted in a PT clinic setting so anyone w/ the need can get into that. Finally, we have a stage III which is conducted in the PT Clinic & is paid for by the patient & is available to anyone who a Cardio will refer to it.

The Stage III is general conditioning to increase stamina & endurance & to give folks their confidence back. It is performed w/ minimal medical supervision, consisting mainly of BP checks at the beginning & end of the session & O2 saturation & HR checks between events. The Stage III is also valuable in that it is conducted in a collegial atmosphere with many people coming together to enjoy the exercise & jointly recover from whatever ails them. They learn that they are constrained only by their own mental attitudes and not by their physical condition. Pretty much like the attitude on the PMC is - people lending one another support, much as a bunch of poles in an American Plains Indian's Tepee. It's a whole bunch of people chatting while exercising & boosting one another's spirits.

The Devil w/ the criteria - it works for a lot of people & that's what counts.

I've quoted Napoleon many times & will do it once again "In Battle, the mental is to the physical as three is to one." And that applies doubly to folks who come out the other side of PM surgery w/ general deterioration due to a long run up to the actual surgery & general physical deterioration or significant stress/anxiety or depression problems.

Whether a person is physically or psychologically ailing, it is real & deserves treatment. Cardiac rehab is part of that treatment - aimed principally at those with psychological issues to overcome.from PM surgery.

Don

Diagnosis, is it important ?

by IAN MC - 2014-06-22 07:06:55

We all like to know " What have we got ? " ; ' What is the diagnosis ?"

In a way it doesn't matter what the diagnosis is. A diagnosis is just giving a name to the condition which is causing your symptoms !!!! If you think about it, it is only symptoms that really matter.

You have had life-threatening symptoms . If your heart quit beating for 18 secs , that symptom needed treatment or you could have died ! You have now got a pacemaker , which is the ONLY treatment to deal with that symptom.

So welcome to the club and I'm sure that you will now, like most of us on here, be able to lead a perfectly normal life without any more cardiac pauses.

As NiceNiecey said you obviously have an electrical problem of the heart which may be heart block or you may have Sick Sinus Syndrome (where the signals aren't strong and regular enough to contract the upper heart chamber as it should) , but knowing which it is won't make a scrap of difference to your life.

Best of luck

Ian

shock

by judyblue - 2014-06-22 10:06:09

Welome, and I totally know that shocked feeling. My symptoms were 24 hours before being hospitalized, so such a permanent solution for what I thought was a temporary problem was hard to swallow. That was 9 months ago. I too had to push my doc for all the information. They give you the excuse that some people don't want to know the details. I am not sure if that group is just a few. I was diagnosed with sick sinus syndrome with the same symptoms you had (low heart rate, syncope) but I do not have heart block. There is a difference. The block is when the signal is sent from the sinus node, but blocked from reaching the chambers. SSS is a mysterious (thus the term syndrome) in which there are times there is no signal. they can both occur, but do not have to. I am in the process of waiting for an answer to whether I have long QT syndrome. It is rather rare, but runs in families. This process has taken now 6 months- long story there. You might want to google it.
good luck and be very gentle and loving to yourself as you adjust to this shock. And do not listen to anyone who says it is no big deal. That is for you to decide!
judy

Welcome Joy

by Grateful Heart - 2014-06-22 11:06:38


Ask your Doctor for the diagnosis when you go back for your checkup. Since it was an emergency, he probably had no time to discuss the particulars with you.

You will learn a lot in a short period of time here. Many of us have only the "electrical" issues and yes, it is a shock to most of us.

Also ask the Doctor about Cardiac Rehab. I think you will benefit from it greatly, I know I did. I can't say enough wonderful things about it and my Nurses were the best!

It is an monitored exercise program for the heart....monitored by Nurses. It is very comforting knowing they are there in case something should happen. You exercise at your own pace, nothing rigorous and will meet other patients with heart issues. It also includes a short class on nutrition and another on stress but it can be the start of an exercise program for you. It was for me, that was over 5 years and 70 lbs. ago and after that I branched out on my own....to a gym.

You have found a good site. We will get you through this...we've all been there.

Grateful Heart

But not needed for everybody!

by IAN MC - 2014-06-23 04:06:50

Hi Grateful Heart / Don Thanks for giving more details on the merits of Cardiac Rehab for certain patients.

I can understand that if your heart is not accustomed to being exercised or if your confidence re exercising has been destroyed then CR will help. But where we part company is the advice often dispensed on here suggesting that EVERY PM patient would benefit from Cardiac Rehab.

It seems to me that a high proportion of people on here were already high-level exercisers before developing electrical problems so do not need advice on how to increase their stamina and endurance.

Whilst I would be the last person to argue with Napoleon, Don, I do believe that mental problems after having a PM only occur in a minority of people .These people may obviously benefit from Cardiac Rehab but it is blanket recommendations for the whole PM population that I question

Grateful Heart : I loved being told that I am "fit and fab" . My wife has just yelled across the room that " fit and flab " would be more accurate !

Cheers

Ian

not sure if this will help...

by funkymoocow - 2014-06-23 05:06:35

hi there! i'm new here. i've had a pacemaker since 2 years of age (i am now 27) and am pacemaker dependent.

what you've described sounds like something i went through 2 years ago when I had a new battery put in. after surgery and going home, i had palpitations and I fainted a few times which had never happened before. it wasn't until they took an x-ray of my chest that it revealed that one of the leads was a centimetre off where it was supposed to be and therefore wasn't pacing my heart properly (leading to all those episodes). not sure if this could be the same case for you, but have you had an x-ray done? i had to have a second surgery to correct the problem, but am as fit as a fiddle after it!

Now that we probably lost Joy....

by Grateful Heart - 2014-06-23 11:06:01

Ian: It's all about helping people. Some people have never heard of Cardiac Rehab and they learn about it here.

When I talk about the benefits of Cardiac Rehab, I speak from experience.

Your first question to me was why I thought Joy would benefit from Cardiac Rehab. Asked and answered.

Now you are questioning my comment that EVERY PM patient would benefit from Cardiac Rehab. I shall explain this too.

Yes, I think EVERY PM patient would benefit from ANY exercise program.....again, if their Cardio allows.

I know you know this....Cardiac Rehab is an exercise program for "beginners" if you will, in a safe, monitored environment. For some it is scary to move after the implant, not knowing what you can and cannot do. Some people need that when they start exercising after their PM/ ICD implants. I needed that! I did not know anyone with a pacemaker/ ICD device and did not know about this site until 2 years after my implant.

When speaking on this forum to someone (usually a newbie) who might be having a hard time with acceptance, is in shock about having/ needing a device or starting an exercise program and has concerns about moving etc., then I suggest Cardiac Rehab because it works! I don't think you would argue that exercising is great for the body, mind and heart and many people can "benefit" from it.

I think athletes would have already discussed this with their Doctors since exercising is a big part of their lives and I did not think it necessary to qualify my statements if they are already exercising with their Cardio's blessing.

But I was wrong and at your insistence, I will qualify my comments to read "EVERY PM patient who is not already exercising can benefit from Cardiac Rehab" from now on and give you the credit for the qualification.

BTW: Since Mrs. Ian knows you best, tell her it was a typo and I left out the "L". Also tell her I said she is a Saint. :-)

Always fun sparring with you.....not really.

Grateful Heart

Thank you all so much

by joy.full.home - 2014-06-26 02:06:13

I apologize for not being back! I am so grateful for your comments and help. My first follow up is tomorrow so I will ask lots of questions. Don't worry... no one chased me away lol. No matter which type of exercise, I know that I do need something. I had started Zumba and yoga a few months before this all started (or got worse). I'm anxious to get back to it. One thing that came out of this is gratitude for life and a renewed dedication to living it!

I am so grateful that I found this board and for those of you that answered. Every opinion and experience matters and will help me in one way or another!

Thank you!!!

You know you're wired when...

Your old device becomes a paper weight for your desk.

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I feel so blessed to have this little gem implanted in me. When I think of the alternative it is quite overwhelming sometimes.