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Update. Does anyone have Sick Sinus Syndrome?


Scarlett
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I have issues....EKG abnormal......waiting on test results from the Holter monitor. Just looking for some experience.

 

 

Update 4/28/17

I had an echocardiogram. Then a consult with an electrophysiologist. Echo is normal, which is great news. I do have AFib. My trigger is cold drinks and the EP says it is a very common trigger. He had also review my Holter monitor results and said I had 3 episodes of a minute or two in 24 hour period. He asked me if I had intentionally induced them and I said said yes. He said 'good job'. Lol

 

So bottom line is he said normal course of treatment is meds ( I think beta blockers) first. I told him that I can avoid cold drinks and prevent 90% of them....and that I prefer to not take meds because I can deal with the symptoms as long as I know what it is and that I am not likely to drop dead. He said he is fine with me not taking the meds.

 

He did tell me my stroke risk is slightly increased but because I have no other stroke risks and I am over all healthy that my stroke risk is only slightly higher than an average person. Thus he is ok with non treatment for the moment. He told me the symptoms would worsen over time and I would eventually need meds or an ablation.

 

Dh is concerned but I am super excited that I am relatively fine and require no meds or surgery for now.

Edited by Scarlett
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Thanks. I had never heard of it either. It is a some sort of arrhythmia that may require a pacemaker.

Yikes. :eek:

 

I was thinking it was some minor thing with chronic sinus infections or something like that. I had no idea it was heart-related.

 

I hope you don't have it! When will you find out?

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Yikes. :eek:

 

I was thinking it was some minor thing with chronic sinus infections or something like that. I had no idea it was heart-related.

 

I hope you don't have it! When will you find out?

 

 

Well I did the monitor Monday a.m. through Tuesday a.m.  Dropped the monitor off yesterday afternoon....waiting to hear but apparently it may take days to read it. I have been putting it out of my mind for a long time but now I am starting to freak just a little.  I really don't want a pacemaker.

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Well I did the monitor Monday a.m. through Tuesday a.m. Dropped the monitor off yesterday afternoon....waiting to hear but apparently it may take days to read it. I have been putting it out of my mind for a long time but now I am starting to freak just a little. I really don't want a pacemaker.

A close friend of mine has a pacemaker and he said it took a while to get used to having this strange foreign thing in his body and it was scary for a while. He's used to it now, though.

 

I hope you won't need one. If your current doctor says you do, I think you should get a second opinion, even if you have to travel to get to a hospital that is highly rated in cardiac procedures. Even if your doctor is supposed to be one of the best, I would still get another opinion, in case there are other options.

 

But hopefully you won't need to worry about it at all. I would call the doctor first thing in the morning and be super-nice to the receptionist and let her know how you're so worried about the results and would hate to have to wait and worry all weekend, so you really need to talk to the doctor about your results. It's worth a shot. If you wait until Friday to call, the doctor might not call you back until Monday. I know that once when I was worried about some test results and they weren't in by Friday morning, I asked if it would be ok if I called again later in the day to see if they had come in, and the receptionist was very understanding about it, but if you start calling on Thursday, I think you have a better chance of hearing something before the weekend.

Edited by Catwoman
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Scarlett, my teen has had a pacemaker since he was 12, and we honestly forget he has it. They are tiny and it barely makes a bump on his chest. The batteries last Many years, and they are working on rechargeable models. He does have a few precautions: no contact sports (basically, avoid getting hit on the chest), no arc welding (lol), and no metal detectors. He gets the X-ray at an airport instead of the metal detector. We send a report via an iPhone app every few months (it reads the pacemaker data through Bluetooth tech). It really isn't a big deal to us, so please don't be too worried if it comes to that.

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Scarlett, my teen has had a pacemaker since he was 12, and we honestly forget he has it. They are tiny and it barely makes a bump on his chest. The batteries last Many years, and they are working on rechargeable models. He does have a few precautions: no contact sports (basically, avoid getting hit on the chest), no arc welding (lol), and no metal detectors. He gets the X-ray at an airport instead of the metal detector. We send a report via an iPhone app every few months (it reads the pacemaker data through Bluetooth tech). It really isn't a big deal to us, so please don't be too worried if it comes to that.

Thank you. I am sure I would get used to it.

 

How about roller coasters?

Why does your son have a pacemaker?

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Thank you. I am sure I would get used to it.

 

How about roller coasters?

Why does your son have a pacemaker?

 

He has sick sinus syndrome. He had an injury to his SA node during a different heart surgery, and it wasn't working properly. Sometimes it would fire too quickly (tachycardia), and other times it would fire so slowly that the AV node would initiate a junctional rhythm. His resting heart rate would vary between 40 and 200 bpm.

 

He just went on a rollercoaster at Disneyland. I didn't even think about asking his cardiologist first. Well, he did fine LOL.

 

His cardiologist has been able to adjust the settings so that the pacemaker initiates a beat when his heart rate goes below I think 60 bpm. He also takes Atenolol, which helps the tachycardia. The result is that his SA node has taken a break and the pacemaker keeps his rhythm regular. This is overall fine, but it does mean that he is now pacemaker dependent. We see the cardiologist now once a year, and they can gauge the battery life. I think he has about 8 years left. The more the pacemaker works, the faster the battery goes, but he had it put in almost 5 years ago (I was wrong - he had it put in around his 11th birthday). So about 13 years total for him - but you would get a newer mode.

 

I don't remember the exact details, but sss is where the sino-atrial node isn't firing properly. It's your body's natural pacemaker.

 

Dh has a pacemaker, for other reasons. You wouldn't know. They put it under the muscle, because he coaches high school sports. Never had an issue and he's fine.

 

Ooh, I didn't even know they could put it under muscle. I wonder if they didn't do that with my son because he was still growing, or maybe because 11 year olds aren't that muscular. Good to know that when he has it replaced they might be able to protect it more so he doesn't have to worry about that.

Edited by ondreeuh
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I don't remember the exact details, but sss is where the sino-atrial node isn't firing properly. It's your body's natural pacemaker.

Dh has a pacemaker, for other reasons. You wouldn't know. They put it under the muscle, because he coaches high school sports. Never had an issue and he's fine.

  

He has sick sinus syndrome. He had an injury to his SA node during a different heart surgery, and it wasn't working properly. Sometimes it would fire too quickly (tachycardia), and other times it would fire so slowly that the AV node would initiate a junctional rhythm. His resting heart rate would vary between 40 and 200 bpm.

 

He just went on a rollercoaster at Disneyland. I didn't even think about asking his cardiologist first. Well, he did fine LOL.

 

His cardiologist has been able to adjust the settings so that the pacemaker initiates a beat when his heart rate goes below I think 60 bpm. He also takes Atenolol, which helps the tachycardia. The result is that his SA node has taken a break and the pacemaker keeps his rhythm regular. This is overall fine, but it does mean that he is now pacemaker dependent. We see the cardiologist now once a year, and they can gauge the battery life. I think he has about 8 years left. The more the pacemaker works, the faster the battery goes, but he had it put in almost 5 years ago (I was wrong - he had it put in around his 11th birthday). So about 13 years total for him - but you would get a newer mode.

 

 

 

Ooh, I didn't even know they could put it under muscle. I wonder if they didn't do that with my son because he was still growing, or maybe because 11 year olds aren't that muscular. Good to know that when he has it replaced they might be able to protect it more so he doesn't have to worry about that.

Thank you for this info...both of you. I am feeling a little weird this morning. My rapid heart beat is waking me up from a dead sleep now. And there is really no telling how long it has been going on because I wasn't even feeling the 90s that ekg picked up. Every time I feel it it is at least 110.....and I have been waking up with what I was thinking was anxiety but now I think it is just my wacky heart rate.

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A close friend of mine has a pacemaker and he said it took a while to get used to having this strange foreign thing in his body and it was scary for a while. He's used to it now, though.

 

I hope you won't need one. If your current doctor says you do, I think you should get a second opinion, even if you have to travel to get to a hospital that is highly rated in cardiac procedures. Even if your doctor is supposed to be one of the best, I would still get another opinion, in case there are other options.

 

But hopefully you won't need to worry about it at all. I would call the doctor first thing in the morning and be super-nice to the receptionist and let her know how you're so worried about the results and would hate to have to wait and worry all weekend, so you really need to talk to the doctor about your results. It's worth a shot. If you wait until Friday to call, the doctor might not call you back until Monday. I know that once when I was worried about some test results and they weren't in by Friday morning, I asked if it would be ok if I called again later in the day to see if they had come in, and the receptionist was very understanding about it, but if you start calling on Thursday, I think you have a better chance of hearing something before the weekend.

I called first thing this morning and left a message for the nurse.

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I hope everything turns out ok. I've had two abnormal ekgs since December. Perhaps I should mention this to my dr. I'd never heard of it until now.

 

 

Do you feel your heart beat racing out of control?  I started checking it and when I felt that way it would be up to 185 sometimes. That is the symptom that took me to the doctor.  

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Just checking for an update. :)

 

I hope you hear from the doctor soon, Scarlett!

 

 

No call back and it is 3:30 here now.  I've kept my phone glued to me today so I don't miss the call.  I feel pretty sure that whoever downloads the data and then gets it back to my doctor is the problem.  He told me they were slow before I even went in.

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Sigh.  I got a message through the patient portal from the doctor about a test dh is having next week....and he mentioned my phone call to him.  He said I could address it through the portal or call his nurse today....so I addressed it through the portal.  Still no call back.  I strong suspect I won't hear anything until next week.  I am just going to chill and deal with it.

 

Thanks for checking on me.

 

Dh has a scope scheduled for Monday.  Something is seriously wrong with his esophagus.  And he got the results back about his back X-Ray.  There are bulging discs---he already has a fusion so more bulging discs could be very serious.  We are suppose to get a call from a spine doctor to set up appt. for that.

 

And dh doesn't have a job.  If he has to have surgery I am not sure what will happen. 

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  • 2 weeks later...

Try not to worry. I know, I know...

 

There are several options--meds, pacemaker, etc. The cardiologist will look at what is causing the a fib and give you the best choices.

 

Even though dh didn't have a fib, it's been kind of nice knowing the pacemaker will work no matter what, so I don't need to worry anymore about whether his heart will keep up.

 

Pacemakes, meds, and procedures have come a long way!!!

 

 

 

Thanks.  My mom thinks it is caused by stress.  I really don't think that is accurate.  I never feel like stress brings it on.

 

I read on Mayo Clinic and it said there are a bunch of possible causes and one is Thyroid issues....and of course thyroid is tied to hormones and my symptoms became prominent about 2 years ago after I stopped all HRT (I was taking a super low dose anyway, but I stopped completely 2 years ago).

 

Sorry just rambling.  I am anxious to get in to see/talk with the cardiologist.  My friend works for the local big heart network and she says the doctor I've been referred to is a well known and well regarded cardiologist. 

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  • 1 month later...

I had an echocardiogram. Then a consult with an electrophysiologist. Echo is normal, which is great news. I do have AFib. My trigger is cold drinks and the EP says it is a very common trigger. He had also review my Holter monitor results and said I had 3 episodes of a minute or two in 24 hour period. He asked me if I had intentionally induced them and I said said yes. He said 'good job'. Lol

 

So bottom line is he said normal course of treatment is meds ( I think beta blockers) first. I told him that I can avoid cold drinks and prevent 90% of them....and that I prefer to not take meds because I can deal with the symptoms as long as I know what it is and that I am not likely to drop dead. He said he is fine with me not taking the meds.

 

He did tell me my stroke risk is slightly increased but because I have no other stroke risks and I am over all healthy that my stroke risk is only slightly higher than an average person. Thus he is ok with non treatment for the moment. He told me the symptoms would worsen over time and I would eventually need meds or an ablation.

 

Dh is concerned but I am super excited that I am relatively fine and require no meds or surgery for now.

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Thank you for the update -- you must be so relieved! :hurray:

 

 

Yes I am.  My other trigger seems to be alcohol.  Anything more than 2 glasses will wake me up in the night.  Doctor said it is also a common trigger...his mom can only have one glass.  He asked me what kind I drink...I said merlot...and he said, 'well you don't drink COLD merlot do you?'  I recoiled in (mock) horror...of COURSE NOT.  I like him.

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Yes I am. My other trigger seems to be alcohol. Anything more than 2 glasses will wake me up in the night. Doctor said it is also a common trigger...his mom can only have one glass. He asked me what kind I drink...I said merlot...and he said, 'well you don't drink COLD merlot do you?' I recoiled in (mock) horror...of COURSE NOT. I like him.

:lol: :lol: :lol: :lol:

 

He sounds nice!

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