sick sinus syndrome?

[ryleep2002]

I'm in desperate need of some advice and some information.
Heres my story...
I'm 25 year old female. I have no weight issues or other health issues. 3 1/2
years ago, I was in school to become a emergency medical technician. While in
the process of learning to read ecg's, we were practicing on each other and we
noticed that I was having pvc's but I could not feel them at all. I printed the
strip and took it to my dr. She sent me for an echocardiogram which was
essentially normal but showed that I had "mild pulmonary insufficiency, probably
physiological due to my age". Nothing of concern. The holter monitor showed
that I had just over 6300 pvc's in 24 hours with no runs of vtach, no couplets
or anything. I could not even feel that I was having them. The verdict from
the cardiologist was that they were benign and I would continue my life and
probably never have a problem with them but if I became symptomatic or started
feeling them, then they would consider putting me on a low dose betablocker.
Now fast forward 3 years. Up until this point, no symptoms, no problems. In
November 2008, I started occasionally having episodes where I would have
pressure in my chest for a about 90 seconds and then have chest pain for about a
minute. After this happened a few times, I went to my family dr. She checked
my blood work for diabetes, thyroid, kidney problems etc. She also checked my
adrenal gland to make sure it wasn't overproducing adrenalin which would
indicate a tumor. This came back normal. She then referred me back to my
cardiologist. While I was waiting to get an appt with the cardiologist, I had an
episode with the chest pain but ended up losing conciousness. This was in
January. I had a holter test which showed that I only had a few pvc's in the
whole day. I then wore an event loop monitor for two weeks. It showed that I
would have occasional episodes of sinus tachycardia with rates up to 180bpm in
casual relaxed situations. There was one event that they thought maybe was
atrial fibrillation but it was not conclusive. I had a treadmill stress test
that showed a few random pvc's and one couplet. The thing that was actually
concerning to them was that although my heart rate was between 70-80bpm at rest
before the test, within 3 minutes of walking at the slowest pace on the
treadmill, my heart rate was 160bpm. Then after the test, I sat down while they
continued to monitor the ecg and said that as soon as my heart rate was below
100bpm I would be allowed to leave. 30-40 minutes later, my heart rate was
still between 130-140bpm although I felt completely fine. Then in April, I was
at work, had an episode of chest pain, passed out in front of my coworkers. I
was breathing and had a pulse but I was unconcious for about 5 minutes in after
being down. They called 911 and I was taken by ambulance to the hospital, the
ecg showed that in one out of the 12 leads, it looked like I was alternating
between atrial fibrillation and atrial flutter but at that time I was not
symptomatic and since it wasn't showing in all of the leads the cardiologist
there felt like it wasnt' a true reading. Now to June, again at work as a
receptionist, same scenerio. I ended up losing consiousness again, my coworkers
caught me and laid me down onto my stomach. At that time I was breathing
irregularly and had a pulse. They rolled me over onto my back and at that point
I turned blue. When they checked for a pulse, they checked 3 times and couldn't
find one they started cpr. After my coworkers doing cpr, I regained
conciousness. I was taken by ambulance to a different hospital where they
admitted me. I had a chest xray which showed broken ribs from the cpr but no
visibly enlargement of the heart. A CT scan of my lungs to evaluate whether I
had a blood clot and that my lungs were perfusing well, this came back normal.
The echocardiogram came back normal. I had a MRI of my heart which showed no
structural defect but that the function was at the lower end of normal. I went
for an EP catheter study which came back normal but again it was made note of my
unusually fast heart rate. I was in the hospital for 2 weeks, hooked up to the
telemetry cardiac monitor constantly. Nothing was seen except again my heart
rate. Around 75 bpm on average at rest. As soon as I would start walking even
at a slow pace, my heart rate would be 130-140bpm. Also, apparantly while I was
sleeping it would occasionally go down to around 30bpm and then a few minutes
later would be over 100bpm. Never once did I feel anything out of the ordinary.
The cardiologist felt that all my tests came back fine and they felt that I was
probably having vasovagal fainting. I've never fainted before from any of the
usual triggers. I don't feel woozy from standing up too fast, or the sight of
blood or anything. I also know that when you faint, you should wake up within
seconds of being flat, you shouldn't turn blue and you should still have a
pulse. The cardiologist said that it is possible that I had a vasovagal faint
which made my blood pressure plummet making it hard to feel a pulse. Apparantly
it is not unheard of to turn blue even during regular fainting and with a pulse.
I still wasn't convinced. They discharged me with no further instruction other
than I wasn't allowed to drive for 3 months assuming that nothing else happened
in the meantime and that they were going to set up a tilt table test to test my
vasovagal reflex. Basically try to make me faint by moving me from a flat
position to a standing position and give me some drugs to increase my heartrate.
I did that test today which came back normal and I did not faint. Now I have no
answers and am worried about carrying on my life wondering when am I going to
need cpr again and this time will I live. I have 2 small children that I am
worried about being alone with now. I did some research on the internet and
came across sick sinus syndrome and specifially bradycardia-tachycardia syndrome
which falls under sick sinus syndrome. Seems to me that I have all the symptoms
of this disorder which is treated with drugs, ICD or pacemakers. I don't know
if there is something specific they are looking for to make this diagnosis that
I don't have or why have they not considered this. Do any of you have sick
sinus syndrome and if so how were you diagnosed. Now I am at home, with no
instruction on what to do to prevent these episodes from happening, what to do
if they do happen again, and really no indication whether any further tests will
be done. What should I do now?

[lollypop45]

Hi I know a few years have passed scince you posted this article.  Your story is identical to the life i lived for four years.  I travelled back and forth to Toronto under going numerous tests including two ep studies.  In the end a loop monitor was implanted in my chest area, with in twentyfour hours i crashed in the hotel room with my husband.  Had i not have had the loop monitor implanted and the doctors were able to recieve an indepth reading of what my heart was doing, I probably would have four very sad kids living without a mother.  The doctors were all amazed and a pacemaker was implanted immediately.  All these tests they did are correct and needed, this problem i have is not common and can only be detected through close monitoring.  Please have the implantable loop monitor put in.  Today I thank the long road i travelled to recovery, to sit and love my husband for being by my side through our adventure, my children as I watch them grow older is  all a blessing it itself.

[BEACHBUMCAG]

wow your story was very emotional i have never heard of that before but i will pray for you and your family

[ryleep2002]

I agree that sick sinus syndrome doesn't completely fit.  I came across an article about IST (Inappropriate Sinus Tachycardia).  After my tilt table test, the EP doc had said directly to me that it appeared that I had Inappropriate Sinus Tachycardia.  I thought he was just making a statement.  I didn't realize that it was an actual condition.  I did some research on that and it definitely seems to fit more closely.  I am seeing my GP on Saturday to go over all of my results and see what she recommends next based on all of the previous tests.  I am going to print an article about IST and take it to her and I am also going to ask her about a possible neuro consult.  I know that they are considering an implantable loop monitor.  I haven't decided if that is something that I want to do.  Thankyou for everybody's input so far and keep it coming.

[underinformed35]

I have sick sinus syndrome and have a pacemaker. I am a 37 year old female. You have to remember that there are variations of sick sinus syndrome. I had tachy-brady syndrome. It was very similar to what you are describing and also very hard to diagnose. I think one reason for that is that most people with sick sinus syndrome are much older. My rates were going from very slow to very fast within seconds. That causes low blood pressure which could cause you to pass out. I am not a doctor but I think you should continue looking for answers. I was sick for a year and a half and went to three doctors before I was diagnosed. I also had an EP study and my heart rate was fast the entire time. They found an SVT but nothing else.
Maybe a loop recorder would be helpful. Good luck to you!

[grendslori]

I will try and answer some of your questions. My daughter had Sick Sinus Syndrome (SSS) This is something that can easily be seen on a regular EKG. It's main symptom is a slow heart rate that doesn't increase well. It usually is in a range of around 40 bpm. The reason they are not considering this in your case is because your EP Study, which is a study of the electrical systems of the heart, were normal. There's really no way you would have had a normal electrical study had SSS been there. To have a fast heart rate during this study is also normal as the EP doctor deliberately makes the heart beat faster. That's the main reason for doing the study, to make the heart beat fast to see if there are any 'extra' electrical tracts that shouldn't be there. If there are extra tracts there, they are ablated, or 'killed off'. If you had SSS you would be having a lot more problems (believe it or not) than you having. If one of your children called to you in the night, do you get up and go to them? Many people with SSS have a difficult time being awaken, you really kind of have to shake them to get them to wake up. Their heart rate drops too low causing a lack of blood flow to the brain. During the day, they are having pre-syncope constantly. They may pass out. What you read about SSS sounds, to you, like you have it, it doesn't to me. Someone who has SSS would never have a normal Tilt Test. When they did that test on my daughter ( and understand that she had severe heart disease requiring a transplant) she went into shock on the table. She had vagal syncope. True heart related chest pains in someone your age is almost unheard of; if you were having true heart related chest pains due to heart disease, it would have shown up on your stress test. Coronary artery disease is the prime reason people have chest pain. There are a few structural problems that can also cause a person to have chest pain, but you have neither of those issues. If all of your tests have come back normal, you may want to consider seeing a nuerologist. I'm not saying that you may not have a problem going on, I, myself, just don't think it's the heart. You are having a significant problem, but you don't have the back-up results leading anyone to think it's the heart at this point.    

[Bubbi01]

Hi could you please tell me more about your daughters symptoms. Im going to have my cardiologist appointment soon and they are 90% sure i have SSS. I had a ecg which showed a low heart rate of 48, 4 pauses in 20mins. Thry ordered me to have a holter monitor test which found i had a low rate of 38 and one increase of 121. They also found one irregular episode. Eaxh night my sleeps are getting deeper and some night hubby finds my breathing shallow. Im very tired all the time. I use tp walk 1hour every morning now only able to walk 30mins. I get pins n needles in my left arm and every now and then random skipped beats/pauses. I get puffed from talking and some days my body is very sore and swollen especially my legs.

[st tropez]

i am so intrigued by your story, i have ectopic heart beats was diagnosed 6yrs ago, sometimes i get palpitations which are really scary, i can feel my heart beating all the time so i am tuned into mine now but because i have had tests done before one doctor said rest assured there is nothing wrong with your heart and wanted me to go on beta blockers but i am to scared incase i faint because they lower your bp and pulse and my bp is already low, if my heart goes abit faster and i can feel it i start to get panicky about it, anyway i think with what research you have you should ask your doctor, you could give it a try.