I'm new and scared - sick sinus syndrome

Wow - found out Thursday that I have sick sinus syndrome - had holter monitor on Sept 23 due to bradycardia - ended up in ER for abdominal pain - spent night in ER - dx'd with UTI - stressed and in pain - yet that HM came back normal. Went to cardiologist for clearance for knee replacement surgery on Nov 3 and I said I felt the HM was not a true representation since I was in ER and stressed and I just wanted to make sure everything was okay. he said fine - redid HM and it came back with tachy - brady syndrome - I was shocked - what happened in those six weeks to change from normal to AF??? I also had tilt tabel - normal and echocardiogram - inconclusive since I am a large person. Now he wants to do an MRI - I am large and also extremely claustrophobic - I just don't think I can do it. Then he said if I couldn't then I need a MUGA test which is fine with me but he is really pushing for the MRI. He also said I need to be on coumadin and need a pacemaker. When I take my pulse it is usually in the mid 50's or higher. I do have sleep apnea and I'm on BiPap. My head is spinning - scared yet not sure what is going on. I didn't feel any of the tachys - on my HM, HR ranged from one reading of 39 up to 107 - I had tachys for short spans 8 times in 24 hrs. My magnesium level came back low normal. I have to wait 3 weeks to see the electrophysiologist - I'm scared since the dr said I am at risk for a stroke due to the possibility of the blood pooling and clotting. How can he tell me it is urgent and then make me wait 3 weeks? I am 58, female, cancer survivor. I'm in NE Ohio - anyone on here from this area and anyone have sick sinus syndrome?

11 Comments

Oh I forgot

by Ohiogirl51 - 2009-11-22 11:11:26

I just wanted to add - I have been feeling funny for the last few weeks - pretty bad headaches, BP up a bit, tingling in arms and legs, hypoglycemic (I'm diabetic) and just feeling unwell - not sure what to think - heart related or ???

Here are interpretations

by Ohiogirl51 - 2009-11-23 02:11:34

Sept 23 , 2009- normal Holter Monitor

Nov.10, 2009- holter monitor
1. Predominant rhythm is sinus rhythm with an average HR of 61 bpm, min HR is 59 bpm, Max HR 107 bpm
2. 8 beat run of PAT at 7:35 pm
3. 7 beat run of paroxysmal atrial fib at 8:43 PM
4. 10 beat run of AF at 3:52 am
5. 5 beat run of AF at 4:15 am
6. 4 beat run of atrial tachycardia at 8:22 am
7. 9 beat run of AF at 8:37 am
8. Sinus bradycardia , 39 bpm, 8:39 am. Journal entry indicates that was up at 8:20 and did not sleep well.
9. 8 beat run of AF at 8:52 am

I felt none of these so I was surprised.
Even more frustrating - still no word on when they are starting the coumadin - his secretary says he isn't in and didn't tell her about it. First he scares me saying I could have a stroke at any time and then nothing. Holidays are stressful enough without this.

not that bad...

by golden_snitch - 2009-11-23 03:11:19

Hi!

Well, this is hardly AF, I mean the runs are very, very short. And since a holter monitor uses only three to five leads, I would doubt that one can even say for sure that those episodes were AF. Also, if this is just the report the program that evaluates the holter made, you can't really trust it. These programmes often make mistakes in identifying arrhythmia. A cardio should go through it and do the evaluation. For example, everytime I have a mode switch from atrial pacing to atrial + ventricular pacing, the holter report says I'm having a ventricular tachycardia, but it's just the mode switch.
I have these short runs of AF, too, at least I had them before I started the Amiodarone (which was for a different reason than AF), and this is really nothing to worry about or take Coumadin for. Could be that the your heart rate during the AF runs wasn't fast, AF can even cause bradycardia. There almost never is a 1:1 conduction of AF into the ventricles, every other beat from the atriums reaches the ventricles when you are in AF (for example one out of four atrial impulses). Some patients have tachycardia, some bradycardia, some have a very irregular but neither too fast nor too slow rhythm.

The rates are fine with an average of 61. I don't see the pacer indication here. Also, 39bpm just before you got up in the morning alone is not a pacer indication. When you have pauses or are running around with low rates like that all day long, then OK for the pacer. But just because the monitor once recorded this low rate...

Wait and see what the EP says. Maybe I'm totally wrong, who knows.

Best wishes
Inga

here are other facts:

by Ohiogirl51 - 2009-11-23 04:11:18

Thanks so much for your help - I typed all this in and then it disappeared:
On Holter Monitor test these were also included:

Ventricular Ectopy: Total VE Beats 9 (0.0%)
Single/Interp PVC 8/1

Supraventricular Ectopy: Total SVE Beats 123 (0.1%)
Atrial Runs: 7
Beats: 51
Longest: 10 beats at 3:52 am
Fastest: 121 BPM at 7:35 pm
Atrial pairs: 7 events
Drop/late 0/0
Longest R-R 1.7 sec at 2:24 am
singles PACs 58
Bi/Trig 0/0 beats

Atrial Fibrillation: AFib beats 0
AFib Duration 0.0 min
I reallly don't understand all the cardiac terminology but since it says no AFib beats - why was the diagnosis AFib?
They just called - starting on the coumadin tonight - I'm scared - with the holiday comingup - do you have any trouble with the coumadin - I'm on antibiitoics so often and I like veggies and greens - going to be hard to adjust. Thanks again. Paulette

SSS w/A-Fib

by ShadowWeaver - 2009-11-23 04:11:45

I have SSS w/A-Fib as well. I would be curious to know what symptoms you have been having? Are you passing out? Experiencing shortness of breathe? I know I don't really even start to feel uncomfortable until my HR gets to around 160 or 170 on the high side and in the mid to low 30's on the low side. If you are not currently symptomatic, then the pacemaker suggestion may be premature.

Michael

I don't feel the tachys

by Ohiogirl51 - 2009-11-23 09:11:45

Michael - really - the only way I knew my pulse was low is because my home BP machine takes and displays the pulse and my HR is usually in the 50's in the morning and goes up to low 60's or higher during the day depending on my activity level. I don't feel the racing beats that's why I am so surprised - no fainting. More like flu like symptoms - fatigue, insomnia, body aches and pains, headache, neck pain, twitching - that's why I thought maybe it was low magnesium but my serum magnesium level was low normal. So I am at a loss - normal HM 6 weeks before the abnormal one.

sounds strange

by golden_snitch - 2009-11-23 11:11:00

Hi!

Sounds strange, and I would also doubt that your symptoms are all heart related.

The heart rates you have mentioned are in my opinion not that bad: 39 bpm (is that at night?) is a little low, but not enough to indicate a pacer implant, especially since you say that at daytime when you take your pulse it's usually in the 60's. The 107bpm is that during AF or is that a normal sinus rhythm? Do you remember what you did when your rate was at 107? Just to give you an example, when I walk (well, I walk a bit faster) to the supermarket around the corner my heart rate goes up to 110 or 120, and my cardio and EP say that's perfectly fine.

Regarding the AF: did the cardio say how many episodes the monitor showed (or are you in permanent AF and the tachy-brady is a result from that)? You should be on Coumadin if you have frequent episodes.

Sorry for all the questions, but from your post it's not very clear what the rhythm problem really is. You should definitely ask your cardio or the EP questions until you understood completely what's wrong.

Best wishes
Inga

I agree with snitch

by ElectricFrank - 2009-11-23 11:11:22

I agree with snitch about the computer determined diagnosis with Holters or even an ECG. Afib is particularly difficult to detect. It is a very small signal electronically and is often hidden in other electrical activity such as EMG ( muscle) artifacts. A good EP or cardiologist can usually pick the information out of the noise, but the computer program isn't trustable. The ECG's have a physician warning about relying on the computer generated diagnosis, but docs are notorious about ignoring it.

Taking coumadin has its own serious risks including hemorrhagic stroke so I would certainly want to be sure I needed it.

Any doc that uses the fear tactic (like stroke at any minute) raises a red flag for me.

frank

Depends

by ElectricFrank - 2009-11-23 12:11:32

I am wondering if these symptoms are the result of some bug that is going around. I have had abdominal pain and bloating, sore muscles, and severe PVC's etc. since early Sept. It is common for abdominal problems to cause arrhythmia's. I am not a fearful type and have just sat it out. Finally, things are starting to change for the better.

What you do about it is a decision you have to make yourself. The "at risk" statement plays on our fears and says little. We are all at risk for stroke, heart attack, and dying. It is just a matter of how much we are at risk. In today's medical marketing environment we are all at risk for unnecessary surgeries, meds, etc. That's not to say that all medicine is bad. When needed it can be a life saver.

frank

My 2 cents worth......

by Pookie - 2009-11-24 07:11:18

I'd be getting a 2nd opinion and I'd also ask to wear a loop or event recorder.

I too was given the scare tactic....I asked the cardiologist point blank what would happen if I didn't get the pacemaker and he told me I would have sudden cardiac arrest. My 24 hour Holter Monitor showed that while I slept my heart rate was in the very low 30s and my average heart rate during the day was 58. Heck, I lived for 42 years like that and felt fine.

What landed me in the cardiologist's office was I thought I was having a heart attack in the summer of 2004 and low and behold it was just major heartburn which I never experienced before, however, they ran numerous heart tests and that is how they found out I had a slow heart rate and then another heart problem, which is a rare defect which is another Oprah show.

It's just my gut feeling and my past experience that you should seek a 2nd opinion. Doctors aren't infallible...they do and can make mistakes!

take care,
Pookie

My Opinions...

by justme08_2000 - 2009-12-13 10:12:13

I realize this is late, but I figure it's worth saying. I had a pacemaker put in 2 years ago at the age of 28 for Sick Sinus Syndrom. My up and walking heart rate was 35 and I had tachy episodes into the 180s. I realize that heart rates have a normal range for every individaual and I do have to say that 39 is on the extreme low side and 107 is tachy, but not by much. Some people "live" in tachy at 110. It's just their normal.

As far as getting the second opinion I hope you did or do (considering the time lapse here). My first cardiologist said there was nothing wrong with me (due to my age). I went for another opinion. Not because I wanted there to be something wrong with me, but because there was something wrong with me and I felt like I was going to die. So, I'd agree with everyone and say go for another opinion.

As far as what the holter monitor says... I'm a Respiratory Therapist and... even I know not to take those for what is printed. There is alot of artifact that come though on them. The computer will pick up what is abnormal and print off those strips. Even after it's cleaned up the report still shows all that stuff that you were posting. I had 286 Ventricle Tachycardia runs in my 24 hour montior, but there were really only like 10. I also had something like 2000 PVCs, but when you really get to looking at the strips there were FAR FAR FAR less. Maybe 100. So, just looking at the summary report isn't always accurate. I just wanted to let you know that so you don't freak out as much.

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