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?

[regula22]

Good think is that this syndrome is highly treatable and most of us can live asymptomatic. Pacemaker is one for the best thing ever happened in medical world, seek out it's remarkably successful history.

As having SSS myself i am more worried not having pacemaker on time than living with it...

[cathyc1967]

i have had a pacemaker for 2 years i was 41 when i got it i have sss my bp was 90/50 and heart rate 40 i had to let another dr redo it but its not any better now besides hurts so bad  sometimes i wish i never got it but i got to go see another sergon about removing it to go even deeper on the other side which they say is very dangerous cause they my have to do emergancy open heart if they cant get thebleeding to stop and im only 43 years old now with 3 loving grand babies and dont wana put myfamily through that

[underinformed35]

Thank you for your concern!
I am going in next week for a chest x-ray and a 24 hr holter. I guess if anything is really off they will see it then.
I know that it takes time to get the programming right on my pacemaker and I do feel better than I did before the pm, so I am just trying to take one day at a time. The doctor already said that if I don't stop having my AV node take over they could try more meds. That is what is causing the headache, I think. He saw it on the last holter they did, but it is beating to high for the pacer to kick in when it does that. I will see what this holter says and go from there I guess.  

[ptadvoc8]

I'm so sorry to hear you are still not feeling better -- you have been through so much in the last several months! How is your phrenic nerve doing? Are you still feeling sore where they put in the PM?

I'm sorry I don't have any information or answers for you, but given everything that you have been dealing with, I would definitely urge you to talk to your doctor about your symptoms. I don't have a pacemaker, but I do have family and friends who have them and my experience with them has been that it takes awhile for your body and mind to heal and adjust -- and it may take awhile for the docs and technicians to adjust the PM to work optimally in your body. The new pacemakers are remarkable in all that they do, but it's my understanding that there are still some variations in individual patients that sometimes need to be adjusted and sometimes meds still need to be used and adjusted, too.

The fact that you are still tired, now having headaches and just not feeling great, sounds really frustrating. If you were to call and explain this to your doctor, would s/he be able to see you sooner? Would you feel better about being seen sooner rather than having to wait until the end of the month? Hopefully your doctor can work with you to help you feel better sooner rather than later. I'm keeping you in my thoughts!

[underinformed35]

I am not pacemkaer dependent. I am pacing about 52% of the time. The rest of the time my heart is beating really fast. It is either fast or slow no in between for me. That is very frustrating. The more time that goes by the higher my heart rate gets again. I just want a normal beat!! I have been getting headaches again lately and not feeling so great. I go back for a check-up at the end of the month. Anyone else had that problem??

[PikaPika88]

Are you same as underinformed?  Are you a pacemaker dependent now?  I hope you're getting better soon.

[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?

[overactor2004]

i have sss & got a pacemaker earlier this year. but i need an icd because i cant take beta-blockers & my a-fib/v-tach r getting worse & im fainting again (i stopped fainting briefly after the pacemaker)

[shazza212]

Hi there

I am a 42 yr old female, have been fit & well all my life and have recently been diagnosed with SSS. When my gp told me this i was devastated, id never heard of it before. I started having symptoms about 10 mths ago, dizziness, palpatations, tiredness and just feeling generally unwell. Iv been referred to a cardiologist and have a heart scan in 4 wks. I tried to ask my gp lots of questions but all he kept saying was 'dont worry'. How the hell can i not worry??? I'v been on every website i can think of researching this condition and they all say the same thing. There is no cure and i most probably will have to have a pacemaker fitted. I just cant get my head round this. I go to bed at night wondering if i will wake up in the morning, il probably have to give up my job, im a real gym bunny and i also weight lift so ill maybe have to stop that also. I just want somebody out there to tell me, from experience, that life is not as bleak as I feelit is at the minute,,, thanks,  sharon x

[Donnaheaps]

Just got back on the forum. My husband has SSS diagnosed when he was 41. He had a pacer inserted 2006 then a year later had ablation for atrial flutter. The doctors tried him on flecinide before the pacer but it dropped his rate to low so stopped after a few days. He now takes BB and lives almost the same life he had prior to all this happening. Its been a long few years of diagnoses and treatment. This site is great for info and support.
Take care Donna

[underinformed]

He said that I have both and wrote it down for me so I could research it. The vt is more dangerous and that is why he wants to do the ablation so bad I think. Thank you for your advice. This is a scary time and doctors are not very good at explaining sometimes.

[PikaPika88]

About 3 months.  Then the doctor at the ward asked me when was the Flecainide starts not working?  I told her 2 months ago!  She didn't do anything because her boss said gave me Flecainide when I discharged.   The whole box of Tambocor still sitting in my cupboard.... I stopped taking it.  The unfriendly beats just disappeared after a few weeks but my chest is still vibrating.

I don't know was my heart played up?  Flecainide bad reaction?  Or the pacemaker induced that?  I am not on any heart medication now.  My cardio said that I don't need to!  At first when he handed me the prescription, he told me that I have to take that for the rest of my life.  I cried in front of him....  then he angry....  He also scold me.......

Did your doctor say VT or RVOT?  I think it is different between VT and RVOT.  Correct me if I'm wrong.

[underinformed]

Well this is just my first day on Flecainide so I have no idea what will happen. How long were you on it before you had a bad reaction?
the doctor said that it would be a two lead pacemaker I believe. Are you on medication now? He wants to keep me on the medication even after the procedures for the pvcs, pacs, and vt. He thinks it will help with my symptoms long term.

[PikaPika88]

Glad you come back and post.

Good patient should listen to the doctor.  I'm a bad patient so don't follow me.  I think my cardio wants to dump me into the bin soon.

Be caution.  You're first time on Flecainide.  If you feel somethings not right then you need to go to the ER and check out.  It did something to my rhythms, even the pacemaker didn't pick up as quickly as it should be.  It picked up 2 beats late that what's the technician told me.  It wasn't a friendly beat.  

"that my heart would not be solely dependent on the pacemaker right now"  I think he means that you're not the pacemaker dependent.  For SSS, the pacemaker will sense and pace only when it needed.  Not like a pacemaker dependent.  It paces every second for life.  

Some type of pacemaker can do 2 jobs.  It can pace out of fast rate (tachy) and speed up the brady.  Like mine one now.  Did your doctor tell you what kind of pacemaker that he'll implant for you?  One lead or two leads?  In 1982, my cardio implanted the one lead (ventricle) for my svt which was not successful.  My tachy over ride the pacemaker.  He did the ablation (His bundle).  Then he changed the pacemaker only for brady.  Until the lead was leaking, showed SSS.  He implanted the 2 leads pacemaker for me which can do the function like I said before.

I wish you go well with the procedures.  Let us know if you have any question.  I hope I can learn something from you as well.

Take care.

[underinformed]

I just wanted to let you know that I went back to the doctor and he does want to do the pacemaker and I started the Flecainide today. I asked him about long term effects of getting a pacemaker like you said and he didn't really answer me. He just said that it was not something to be scared about and that my heart would not be solely dependent on the pacemaker right now. I am not sure what that means. He said that he would leave my sinus node alone for now. He also wants to do an ablation for the fast heart rate once the pacemaker is in. That is a lot to do. I am kind of scared. He said that he really thought I should go ahead now and get the pacemaker instead of waiting.

[PikaPika88]

Hi underinformed,

It depends on your doctor that I believe.  When I was 15, any med that they put on me needed to stay in the hospital for one or two weeks.  Now because I got the pacemaker, they just throw it/them in.  (They used combo as well).  He used Flecainide with either digoxin or atenolol or verapamil.  It made me worse so I stopped.  

The pacemaker isn't that bad.  When the first implant take place, it sore, hurt, pain ....... Second, third.... not that painful.  Other than pain, long term pacing can make your heart lazy.  It becomes a dependent and didn't want to beat by itself.  I asked my cardiologist what is the good and bad things before the implant but he didn't tell me that "long term pacing can cause heart failure."  You can raise that question to your cardiologist.  Let me know what is his answer.  Thanks.

Take care.

[underinformed]

Thank you for your comments. It is hard to decide what to do about things and you feel very alone at times.
To pikapika88- the doctor did not say it was dangerous so I don't know. He did think I should do something about it and recommended an ablation or the Flecainide. Do you have to go in the hospital to start that medicine. Everything I have read about it says you do. That sounds a little scary.

[bobad]

I don't know much more than you, but I have SSS and can relate my experience with tachy-brady.

My SSS started with PVC's. I have noticed tachy and PVC's for years, but not the brady. It suddenly got worse, and I started feeling faint. My cardio doc had no choice but to implant a pacemaker to head off the brady, and put me on beta blockers to slow down the tachy. The PM basically saved my life, because the brady was going too low.

When I sit quietly, I can feel a PVC, which seems to trigger the tachy, which triggers the brady, which triggers my PM, not allowing my heart rate to go below 50 bpm. It's bothersome, but not terifying like it was before the PM and beta blockers.

Watching it on the heart monitor, the sequence goes like this:

65bpm, for 10-60 minutes. (normal resting heart rate)
Sudden hard bigeminy PVC's for 5-10sec
Sudden jump to tachy ~95-110 BPM for 10-15 sec.
Instant crash to brady ~30 BPM for a minute or 2
Repeat endlessly.

I suppose SSS has all kinds of variations, but that's the way mine cycled until I got the PM and went on beta blockers. It's interesting the PVC's seem to trigger the entire sequence.

Best of luck, and keep us informed on your progress.

[PikaPika88]

I'm not on any heart medication.  Did the doctor tell you RVOT is dangerous?  I read a document about this RVOT, it killed.  Most of the cardiologists thought it is benign but I think they're going to change the level of assessment soon.

Once the pacemaker put in, they didn't want to turn it off or take it out anymore.  Unless it has infection or dead.  They told me put the pacemaker in for trial.  Now it caused trouble, I asked him to turn it off.  He said can not.  

I don't know what the cardiologists can do and can't do.  If he is young, he might be able to do something other than pacemaker to his wife if he found his wife has SSS.

Take care, please let us know what your doctor said.