Sick Sinus Syndrome

[underinformed]

Hello everyone.
I just wanted to know if anyone out there had this or knowledge of this. My doctor thinks this is what I have. I am being sent to another EP doctor on Friday for a second opinion. My doctor said that he has not seen this in someone my age.  (36) I did some research and it does not seem like there is a treatment for this, so I am very scared that I will have to live with all the symptoms. He said it was progressive and would get worse and that I could get a pacemaker but that is really all they can do.
I had a heart infection (myocarditus) about ten years ago and he thinks that maybe that did some damage that is just not showing up. Is that possible?

[kate2314]

yes I am 40yrs old and was diagnosed with SSS a year ago, my heart rate would not go above 19,   since I received the pacer  I have had no serious problems except I still suffer very low BP

[underinformed35]

Well I can sure relate. I did have to get a pacemaker on May 1st and I have been very depressed. It is hard to accept at 36 that I have to live with this, but it is safer. I had a sinus node modification first because the doctor wanted to see if that would help my situation. It didn't and just made things worse. So I had to have the pacemaker. I did not have a choice to wait anymore. My heart rate was going in the 30's with long pauses. I do feel better but not great yet. I just hope that I can get back to feeling normal at some point.

[Missgrateful]

Hi, I am 43 and had my pm implanted 18 months ago. SSS and block. I started a family later in life. My son was 2 and 1/2 my daughter 7 months.  My pregnancies put a bit of pressure on my heart which was damaged as a child.  It took so long for a diagnosis. I was sent for some really silly tests for ulcers etc. It was so easy for gps and specialists to say I was passing out due to my pregnancy.  Anyway PM in and yes it really hurt but my babies have their mum.  AFTER the pm I got depressed and angry.  I found it so hard to make friends with my pacemaker.  I asked a lot of doctors and specialists for help to discuss my feeling with someone.  Not one response.  Did anyone else feel depressed after the procedure?

[overactor2004]

has any1 here with sss had an icd implanted -instead of just a pacemaker?

[grendslori]

My daughter recieved her duel chamber pacemaker for SSS when she was 8 years old. Having a pacemaker did improve the way she felt overnight. Because of other heart issues, she probably didn't have the quality of life that would be expected, but I do know that this device is a wonderful thing and shouldn't be feared by anyone. If you need one, get it implanted....it will make you feel so much better!!

[retref]

I'm 63, female, and have had Paroxysmal  Atrial Tachicardia (with MVP) for almost 50 years.  Years ago, it was thought that people with this condition had some kind of  psychological problem that caused the problem. When I was about 25, a doctor  had me take 4 Valium tablets within about 3 hours.... I was out cold, and my heart just kept racing along.... thankfully, I had to be hospitalized, because someone finally did the proper tests and found that it was a purely mechanical problem.  Nothing specific sets it off... I can be reading a book and relaxing or reach up suddenly to hit a tennis ball. I was told years ago that I'm not a candidate for an ablation, because my heart has an irregular signature beat and two extra nodes (aside from the normal sinus type) that set off my PAT episodes (I go from 80 to 200, in a wacko rhythm,  after one premature beat and stay there until I'm injected with verapimil.)  
After experimenting with Atenolol and other beta blockers, I now
take a "cocktail" of  Tenormin and Digoxin every day, and have been told that I will for the rest of my life.  It holds it at bay pretty well...... The usual maneuvers to convert to a normal rhythm, including vagal massage, do not work on me.   A couple of years ago, I did discover a way of staving off or converting an episode if I catch it on that first premature beat...... I take a very deep breath and hold it as long as I can..... somehow, if I do at the very first moment, it converts it immediately. I hope this might be helpful to someone out there.
Over the years, my full-blown PAT episodes have gone from an average of once or twice a month to twice a year.    But, the medications go on.
I've also been told that I've been on these meds for so long that I cannot now stop taking them (thank goodness for my drug plan!.)  Question:  Anyone out there been on long-term meds and were weaned away from them???  Is this a dangerous thing to do after all these years?