Would You Get A PM If You Had ..

I have been diagnosed with possible "Sick Sinus Syndrome".
My hr stays around 32-34 bpm for the most part, whether I am sleeping or awake. I have not passed out. I do get lightheaded and dizzy.....not everyday. I thought it was my sugar getting low when i went to long without eating. My sugar is fine. I am TIRED ALL the time.
I ahve chestpain and shortness of breath...but they said it might be acid reflux...the chest pain. the shortness of breath they are not sure about.
My hr goes from 30-40.bpm to 170 in a minute. That causes shortness of breath. it only happens when I exercise. But I am active.
Sooo.....my cardiologist said I do not have to have it. That my heart SHOULD not just stop. NOT WILL NOT.
So..this is a huge decision for me. I was not aware that it was usually a decision you get to make. I thought you either need one or you don't.
I have read post here where some people are having a rough time getting use to there PM.
If you can't feel it PACE you....what makes it hard to get used to. It SEEMS like you would not know it was there.
BUT...i have read that alot of people do feel it and it makes them very uncomfortable.
I go for a consult in two days.
ANY HELP or SUGGESTIONS would be appreciated.
ALSO...what kinds of QUESTIONS should I ask the Cardiologist?

Thank You, Very Nervous & Afraid....Holly

12 Comments

Sick sinus syndrome

by Megg - 2008-07-01 01:07:26

Hi Holly, I am 55,very active and fit.I had sick sinus syndrome and I had a heart rate of 45 bpm,unless I did something really energetic.I would sometimes faint,though usually got a warning,until I had a total blackout without warning.This was unfortunate as I was riding a horse at the time.I was fitted with a pacemaker last December,and I am no longer tired, I am not usually aware when I am being paced and when I know I am there is no pain or discomfort,just that my heart rate lifts all of its own accord for a couple of minutes.The pacemaker unit does not cause me any discomfort at all.When I first got it the car seatbelt was a little bit of an issue but I had a sheepskin cover around it. I no longer do that.I would definitely not be without my pacemaker again. You don't know how bad you feel until you get a pacemaker,because then you realise how good you feel.Hope this all helps.

Sick Sinus Syndrome

by OIMAPRINCESS2477 - 2008-07-01 01:07:34

Holly,

I have Sick Sinus Syndrome and I am a proud owner of a pacemaker. I on the other had was passing out and every time I passed out my Cardiologist said that my heart was stopping. I would ask your doctor to send you for a Tilt Table Test. and If you also don't want a Pacemaker you can have an implantable loop recorder implanted that will record your heart rhythm for up to i believe its 15 months. This will also tell you if you may really need it for when your sleeping. As for people who are having a hard time dealing with their pacemaker its mostly people who are having a hard time dealing with the pain and the discomfort of the surgery. Some people may be able to feel the pacing. I know that I can personally feel it. Its nothing bad just feels like little butterflies in my chest for a minute. I have noticed that before I had the pacemaker I was always tired. and Now that I have it I have a lot more energy and I feel that im sleeping better. If you have anymore questions feel free to send me a private message or email me at OIMAPRINCESS247@GMAIL.COM.

Britt<3

Hi......

by Bionic Beat - 2008-07-01 02:07:44

Holly,

I'd be nervous about NOT having a pacemaker if I was you!

Mine was implanted on Feb. 22/08 and yes, it was uncomfortable, I had trouble sleeping except on my back.
There was some "nerve pain", was concerned about it being on a "nerve" but it has gone away now.

My first doc had me on pills, tons of pills.....I came very close to dying on those pills.

I told the second doc that "I don't need pills" and after 2 days of hospitalization & lots of tests, he stated that I was right, I didn't need pills, I needed a pacemaker and AV node ablation.

It's going to take me about a year to recover, according to my EP guy, as waiting damaged my ventricles considerably.

Yes, it's a foreign body being shoved into your chest, it's a bit miserable (temporarily if you're lucky) but at least I have the
comfort of feeling sooooo much better and life is beautiful.

Please do NOT accept the answer that your heart "should not just stop"!!!!!

This is YOUR life they're brushing off!

A bit of pain for a lot of gain, don't be frightened, just get it put in, ASAP!

You won't regret it, promise!


I feel fabulous!

Bionic Beat

FIND THAT ODD

by peter - 2008-07-01 03:07:09

I cant uderstand your doctor saying you do not have to have it. What is he implying? It is patently obvious that you need a pacemaker from your post and I strongly advise you to get one as soon as possible for your own safety. You are taking a great risk by sitting on the fence. Cheers Peter

Question for doctor

by ted - 2008-07-01 04:07:24

You say you have "possible" Sick Sinus Syndrome with pulse going from 30-40 to 170? Sounds like something is not right. The only question I asked my doctor when told I needed a PM, was: "if you were me, what would you do."? Now, I would also say: " make sure you don't give me a Guidant". Best of luck to you

HR of 30-40

by ElectricFrank - 2008-07-01 07:07:47

Unless you are a super athlete, a HR in the 30's is too low to supply the blood your body needs to be healthy. You HR should also quickly start rising if you engage in any exercise. Based on what you have said I would go for a pacer. It may take a short while to get it adjusted properly, but I think you will be amazed at how much better you feel.
The other factor is that an extended time without proper blood perfusion is likely to result in various problems developing in the organs of you body, some of which may not be reversible.
Getting a pacer is not a difficult procedure. Just be sure to have it done by a cardiologist with plenty of experience and ask that the adjustments be done by the pacemaker rep.

frank

Elective???

by candi51 - 2008-07-01 09:07:40

I have an ICD and was told I HAD to have it and ASAP by one Dr and then when I went to see the EP he was saying "elective". This really confused me as if the decision was mine to make.

Well the only decision you have to make is the appointment.

I talked to several friends in the medical field and they only categorize it 2 ways- "emergency" when you are in the ER and they do surgery immediately or "elective" by scheduling an appt. It doesn't mean you don't need it- it is just not an emergency.

My ICD was installed as a preventive measure and I have never had any arrythmia to date so the terminology was especially confusing. The surgery went very smoothly and recovery has been fine.

I know several people that didn't know how bad they were feeling until they got their PM and now they feel great!

Best Wishes!
Candi

Sounds Like The Right Thing To Do!

by tripastor - 2008-07-01 10:07:47

Holly,

I was also diagnosed with SSS in January after my heart slowed down to the point that it actually stopped for a few seconds.
My situation is different in that I was not given the choice, but told that my EP would not let me leave the hospital without one because I never be sure when this problem would arise again.
I would encourage you to have the PM implanted. I'll admit, I am one of those who can tell that the PM is working, and I still do not enjoy when it goes off (more mental than physical), but when you weigh the alternatives and the peace of mind that you will have with the PM...the benefits win.
By the way, I am still very active and enjoy all the things I love. If you have more questions just send a message, I would enjoy talking with you.

Tripastor

30, SSS/BTS

by tpod - 2008-07-01 11:07:14

hi, holly.

i'm 30, and i have sick sinus syndrome, too. my battle for health began nearly three years ago, when my CEP told me i didn't need a pacemaker, and that, if i should lose some of the weight i've been carrying (i had gastric bypass in nov 05. i've lost a LOT of weight...) i would be a good candidate for an ablation. (i also have a-fib.) he was adament that i did not need a pacemaker, despite my occasional light headedness and SOB.

about seven months ago, i began passing out on a regular basis - not, like, i would do x and y would happen, but i would do a or d or x or z or j or i, and BAM! i would be unconscious on the floor. it was completely random, and terrifying. and you know what my CEP told me?

the first time, he said it was all in my head.
the second time, he said 'well, your heart rate was a little low.'
the third time (and this is with er visits each time.) he said it was all in my head. he said he'd do an ablation if i lost 50 more lbs. (i'd lost over 300 by then.)

finally, i went to my regular cardio. he told me the diagnosis (which i was completely unaware of -- i knew about the tachy and the a-fib, but i had no idea about the sick sinus syndrome.) and he said 'next time, get yourself into an ambulance, and go to memorial. you need a pacemaker. we'll try to force his hand.'

so that's what i did. i was baking cookies, at a friend's house thank goodness, and i felt it coming on. i held on for dear life, made it to the garage where everyone was, and said 'someone call 911.' and promptly hit the floor. (not hard - dave caught me, and i didn't get hurt. in case you wondered.) and you know what my CEP said when he saw me in the hospital two days later? (they admitted me. poking, prodding, medication and bad food. WOO!) he said 'well, let's get you on a tilt table and do a study.'

he was COMPLETELY UNWILLING to do a pacemaker, despite my apparent inability to stay conscious due to a resting heart rate of 17.

my cardiologist decided to 'do a study' of his own, and kept me in the hospital one more night. (this part is amazing, still, to me. i adore my regular cardio guy. i mean, i just love love love him. he's in medicine for all the right reasons, and you can just TELL.) that man sat by my bed for HOURS watching my monitor and taking notes. he didn't want to see the recordings, he wanted to see what HAPPENED when all these things went on. he watched my heart rate go from 17 to 190 in four seconds -- while i slept. he watched that a couple of times, and then scheduled an appointment for me to see him two days later. i was discharged from the hospital the next day.

when i saw him in his office, he said 'you have a choice. find a new EP, start over, and go through all the tests...or we schedule your pacemaker insertion for next week.'

after three. long. years. i finally got my pacemaker, and i have never been more glad in my life. i sleep so well, now, when i do sleep (insomniac. heh.) and i feel...even throughout the day. if i'm tired, i don't get MORE tired, i just am tired, like normal. and if i have decent energy, i have decent energy all day, because my heart NEVER beats less than 70 bpm anymore.

holly, my suggestion? get a second opinion. if YOU are concerned about YOUR health, then YOU need to take action. we are 90%, if not more, responsible for what happens with our health care. if you don't think your doctor is being thorough, or if you think he's wrong (it happens, honest.) or if you want other/better options, then get yourself a second opinion. and if that's not good enough, get a third. see an EP. see another cardio. see ANYONE who might be able to help you learn to live with this, or do something about it.

the pacemaker is the second best thing i ever did, and despite my young age, and my initial fear and anger at my diagnoses, i am happier and healthier than ever. i would encourage you to seek the same -- feeling full of life is so...refreshing.

good luck. and feel free to message me if you want to talk. :)

amy

THANK YOU

by LIVE_STRONG - 2008-07-02 12:07:55

Thank you all for all your help. I meet with my EP tomorrow.
My HR does go up when I stand up. If I am sitting down it drops to 32-36 .Also does that when I sleep.
It does NOT Increase to a TACH unless I am jogging or any other exercise that should put your hr in a TARGET zone. BUT it INCREASES fast. And at 150-160 I feel SHORT of BREATH. I dont know if because my RESTING HR is so low?
The EP said I do NOT ABSOLUTELY have to get a PM at this time.....because I am not PASSING out.
BUT...the SHOULD NOT STOP scares me.

I hate to ADMIT ....BUT I AM SCARED of FEELING it.
Does it feel like palpitations?

AND....HE acted like GETTING A PM..was NO BIG deal.
I wont even KNOW IT"S THERE". It sounds like I will.

He also SAID I could WORK without PROBLEMS. NO need for SSI EVEV TEMPORARILY......unless I was a PILOT!
He sounded like he was just trying not to scare me....but....DID ANY OF YOU NEED TO TAKE SOME TIME OFF WORK?
I would THINK YES!

I am so THANKFUL for all of you being here.

Holly

Pacemaker Experience

by ElectricFrank - 2008-07-04 10:07:53

A couple of comments.
1. At a HR of 150-160 it is normal to feel a bit breathless. Unless it is occurring at a low exercise rate I wouldn't worry about it. Just slow your exercise rate a bit til you are comfortable. Remember, as we age our target HR drops and if we keep pushing it we will at best be uncomfortable.
2. You mention palpitations. PVC's are form of palpitations and can produce unsettling sensations.
3. Finally, the experience of getting a pacemaker depends a lot on your nature and the competence of the cardiologist. You will have some surgical pain from the implant, but it is often minimal. Im retired so it wasn't an issue, but I could have gone back to work the next day unless a job required lifting things over my head. I walked 2 miles right away.
4. Bottom line..if you decide on one get a cardiologist who does them regularly. Insist on having the checkups and programming done by the pacemaker manufacturer rep. And ALWAYS get a copy of the pre and post programming printout at each checkup.

good luck,

frank

SSS

by richan - 2008-07-05 07:07:58

Hi Holly,
The comments seem to point at getting the PM! I also had SSS and my HR would not go above 32/min no matter what I did. So, taking a flight of stairs or walking my dog became quite a challenge.
Since my PM was implanted (March 05), life has been much better for me. My cardiologist set mine to go from 55 to 160.
I am not aware of it pacing me. I am aware of it's presence - specially when I am swimming. At a certain point in my stroke I am reaching as far forward as I can but the PM prevents me from reaching as far as I really can - it is in the way!
As some have stated, it has become a love/hate relationship for me. I am pleased to have it - really is better than not having it!
Anyhow, I hope that things work out OK for you, Holly.
Peace,
Richan

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