Pacing for sick sinus syndrome

Hi there I am a 34 year old woman who has recently been diagnosed with sick sinus syndrome. The condition first presented 8 years ago after a virus condition when I was doing a lot of fitness training, although I was never correctly diagnosed - I had the full heart tests including a holter but they could never "catch" the arrhythmia. Symptoms were feeling dizzy, faint, and pre-syncope every 2 weeks or so. After about a year my symptoms drastically reduced and I have just lived with it happening once every few months. In the last 3 months however the problem has come back and I now have symptoms every week or so. My husband called an ambulance one time and they caught on ecg a very low and irregular heart beat. The doctor said it looks very much like I have SSS and I'm booked in for more tests again in October.
I get the feeling from all the doctors I have seen that because of my age there is a reluctance to treat with a pacemaker and it is about where I sit on a scale of how disruptive the condition is to my life. I know when a faint is coming so I avoid injury but it is becoming incredibly disruptive to my life and work again.

Is there anyone who has been in a similar situation? what would you advise my own standpoint to be with the doctors?

My resting heart rate is 52 dropping to 40 while I sleep. I like to keep fit but currently have the time only to run once a week so I am certainly not an athlete! It seems in my non-medical capacity that my body can cope with the low heart rate normally but when there are periods of arrhythmias I just cannot get enough oxygen around my body.

I'm in the UK so I'm waiting a few months until I get more tests done.

Sorry for rambling on with my story but just wondered if there was anyone who had a similar experience.

5 Comments

sss

by islandgirl - 2015-07-06 04:07:10

I am 58 with no heart disease, bp problems, cholesterol problems. I had a pm implanted on an emergency basis in Feb due to sss. I played competitive tennis, ran, and raced sailboats and at 46 was stricken with hereditary arrhythmias that caused sudden death for my uncle and his father at age 54. I have always had a resting pulse in the mid 50s. When I went to the EP in Nov. after having 18 hours of constant different arrhythmias, it had been 5 years since I had seen him. My sinus node was not working all the time during my visit. I had an ablation in Dec. and he found my sinus node only working part time and was hoping it would improve after the ablation for 6 different hereditary arrhythmias. Wearing a monitor continuously after the ablation, my pulse began dropping to the upper teens at night and mid 20s in daytime with 5.7 sec. pauses. The dr. said it would only get worse. I didn't realize how sick I was, as I'm always in denial of anything really wrong. The pm keeps my heart beating 60-155. I'm still having arrhythmia problems and am not up to heavy exercise yet. Soon.....
Don't delay.

not a disruption

by knb123 - 2015-07-06 10:07:54

I live in the US and am not too familiar with the ins and outs of the UK healthcare system. However, it sounds as if people are at the mercy of the system. (For example, it would make me absolutely wild to be told I have to wait til October for more tests. This is an untenable situation...and, frankly, having a pacemaker installed at age 34 is considerably LESS of a disruption than sudden death.

Sorry to sound dramatic but there it is. I'm hoping you can identify a teaching hospital near your community and hie yourself over there with a copy of your medical records. Repeat your story until someone pays attention.

What AngrySparrow characterizes is entirely possible. Don't permit yourself to be the victim of what sounds like medical rationing--an altogether unacceptable concept in this day and age.

Let us know how things come out.

Hi

by wired&blessed - 2015-07-06 12:07:30

I also had SSS and has a dual chamber fitted last Tuesday. I had tachy-brady, sob, lightheaded, dizzy, etc fir almost 8 yrs and only until now i had my surgery. I an 46 yrs old now but i was also told the age story. I changed cardiologists/arrythmia specialists and after many exams decided i needed one ASAP. I honestly dont know why thw age is an issue! I have my mom and mostly all her sibblings with pacemakers and also some at an early age and some passed away but had never treated themselves...ill have you in my prayers, all will be good!!

Hi chowder

by IAN MC - 2015-07-07 08:07:48

I am in the UK so I understand the strengths and limitations of the NHS . My thoughts :-

- your age is irrelevant. A new TV may develop electrical problems or it may last 40 yrs; hearts are no different !

- I have SSS and fainting once was one time too many for me

- it sounds as though you definitely need a pacemaker and you need it as soon as possible

- never underestimate the value of having your GP on your side. He / she could get you to see a different cardiologist if you insist.

- my GP told me to go to A&E if ever I got to the fainting stage which is what I did , once I got into the cardiology ward I was fitted with a PM almost immediately

- living in the UK does NOT mean that you have to wait months for tests . See your GP , go through your history and insist that you need cardiology treatment NOW

- there is no reason why your GP surgery should not fit you with a Holter monitor NOW and find out exactly what your heart rate is doing over a few days. Your SSS has obviously worsened so you need another Holter test NOW

- if you can afford it there is always the private option of course

- the level of disruption to your life is not the major issue and learning to cope with faints is not only impossible but is potentially dangerous

Let us know how you get on

Ian


Say hello to your sister!

by slowbeat - 2015-07-09 10:07:19

Chowder, i'm 39,live in Ireland and had your symptoms for years. Had 4 echos,4 stress tests and 4 holter monitors in a 10 year period. My holter results showed an increase in the amount of time my heart rate was low and still i was'nt referred to a cardiologist. It was only when my gp decided to refer me himself to a different hospital that i was diagnosed with sick sinus syndrome. All the years i thought it was anemia or thyroid or anxiety causing my almost fainting,tiredness and funny/heavy sensation in my chest. Get referred asap,don't leave it until your work,driving is affected. In my case i did leave it too long,my children and husband were always on edge in case i fell over. I have my pacemaker now and am road to heallth again. Good luck.

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I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.