Pacemaker???

Hi there.  Can anyone with information/experience with Pacemaker please help me.  Short version: I had Ablation done 3 months ago to treat PSVT and arrthythmia's but EP could not solve problem:  I had 3 AV nodes and he was only able to ablate 1.  I still get PSVT and arrthythmia and I experience palpitations when I urinate, walk, exercise, sometimes when at rest and I have tried 4 different Beta blockers but they do not work - get HR down from 100 to 60, but then "miss beats" are 4 seconds apart and makes me feel dizzy/faint.  I have muscle weakness and always fatiqued.

I had Holter ECG done yesterday/today and have to go to EP again 15 Feb.  Last time he said that if Ablation did not work, only solution is PACEMAKER.

I am really scared of PACEMAKER but if it will make me healthy again, i would consider it.

Is PACEMAKER the way to go at 32 years old?  Would appreciate any advice and would want to hear from someone who have to live with a Pacemaker...

Thank you :)

[Donna-lee]

Hi there, My hubby had a pacemaker for sick sinus syndrome as he had big pauses in his heart rate it has helped. The pacemaker has not altered his life any. He is still working as an electrician, etc.

[PikaPika88]

I had the first pacemaker in 1982 (24 years old).  I really don't know what advise I can give you.  Everything has advantages and disadvantages.  See which side you want?  Planning for long term or short term?

1.  Are they going to ablate all your av nodes and put a pacemaker in?  That way you'll be a pacemaker dependant.

2.  Or leave all the accessory pathways or av nodes conducting their traffic.  They use the pacemaker to pace out of your abnormal rhythms only?  

Are you the one having wpw, Smiley?

[Smiley2000]

I am 32. It makes me feel better that there is someone who had a Pacemaker at age 24!  and I thought I am to young for this.

I have WPW and a bit of a "abnormal" situation:  I had 3 AV nodes and EP ablated the 1, but the "trouble maker" is sitting in line with my normal node and EP could not ablate that one.  If he decides to go back and ablate the other node, then I will become pacemaker dependant.  I don't know much about these things and if I have a choice I would want the PM you described in no. 2

I have to see EP 15 Feb, then I'll ask all my questions.

any suggestion what I should ask him when I see him again?

[Thinline]

Hi Smiley.  I got my pacemaker at the ripe old age of 25, I’m 36 now.  I’m totally dependent on it as I’ve had an AV Nodal ablation.  Doesn’t bother me in the slightest.  It’s often the subject of jokes at my expense.  If anything electronic breaks down or blows up, my pacemaker is blamed!  It becomes part of you and you must never view it as some mechanical thing, rather view it as an organ in your body, just like your heart, liver or kidneys.

[Momto3]

Thanks for explaining about the WPW, etc.  Now, I get it : )

Ask the doctor if there is another line of medication that you can try before he/she moves ahead with the pacemaker.  If that isn't an option, or different meds don't work, then maybe the pacemaker is your best option.  

Do the symptoms bother you so much that this is your only alternative?  Or, is there some danger to leaving things as is?  

[Thinline]

You got power in Pretoria today?  Apart from a bit of a flood yesterday, we in Jo'burg have had power ALL DAY LONG.  I sleep with oxygen at night and the o2 machine lets out a terrible screech with there's a power failure, nearly does my heart in every time, but then my pacemaker kicks in and I'm fine again - see, pacemakers are good things after all and they don't rely on Eskom to keep them powered!

[Smiley2000]

You guys are great, thank you :)  I don't feel so anxious about this whole "pacemaker" thing.  Holter report showed a lot of Atrial extrasystoles and HR between 103-151.  I have tried 4 different beta-blockers in the past year and they only make the symptoms worse by lowering my BP (80/60) and they don't fix rhythm.

Maybe I can learn to live with it?  I just have to figure out a way to get my energy-levels back...

Thinline, I am glad to see that I'm not the only one from S.A. on this forum!  Our power was on the entire day :) I laughed about your description of Eskom and PM.

[banglamom]

I'm sure by now you GOT your pacer if indeed that is still the plan.  I got mine last year- at 40.  I've had 3 ablations to try to stop all the madness (rhythms).  Unmedicated, my rhythm is almost never below 160.  When I just let it go fast and irregular for a long time... I was losing functionality, dropping my ef and my valves were all leaking too.  It HAD to be slowed down to keep my heart from totally wearing out.  They couldn't ablate my AV node because it turned out to be right on the phrenic nerve.  So, all the rhythms have to be med controlled... which as you know means serious hypotension and often huge pauses.  My heart actually stopped at one point, SO.. a pacemaker to go with the meds now.  All that to say... it was the highlight of 2008.  My only regret is that we waited as long as we did.  The dr kept saying.."we better be careful.. or you're gonna need a pacemaker"  When I finally got the pacer, it felt so much better.  Over the course of the year.. the goal is working.  I am nearly 100% paced because the meds are actually squelching the rhythms.  It is a tightrope for me between hypotension problems if there is too much meds and tachy dysrhymias if there isn't enough.  Unfortunately, too much and not enough are often the same amount of medication because the whole cardiovascular system is dynamic.  It is a difficult balancing act.  The pacemaker gives me a great deal of comfort in that I know my heart is NOT going to stop.  I have passed out from hypotension but still know not to worry that it will be too harmful.  I do NOT go to the dr for amy of it... they are doing everything already anyway... I try to just roll with it.  Hope you are doing well.   Take care.

[Chritre]

Sounds like there's been a lot of good discussion already, but I wanted to chip in my 2-cents worth since I'm new to the site.
I have a had a IV degree heart block my whole life and eventually got a pacemaker at age 20.  I never thought the heart block bothered me, but at 20 I got mono and as I was recovering my heart started stopping.  I got a halter monitor and the stopping became more frequent for 2 days, when I finally took the halter monitor in 3 days earlier than planned.  My heart was stopping for up to 19 seconds at a time, so the next morning I had a pacemaker put it.  It was the best thing that's ever happened for my fitness.  After the pacemaker I started running for the first time in my life.  I live in Colorado now and am sure I would not be hiking at 12,000 ft without the pacer!  I was scared when I got too.  I did not want to be dependent on a piece of machinery for the rest of my life.  But I hardly ever think about, except when I am going through airport security!  ;)  Also, at my check-up every 6 months they do a test where they shut off the pacer and see how my heart will respond.  Old reliable is still there at 40bpm.  Not enough for an active lifestyle, but reassuring that if something ever happened and my pacer quit, I'd still have that backup!
Good luck to you!

[banglamom]

Do you find that your pacemaker gets your heart rate up fast enough?  I have had trouble with my heart not keeping up with the demand by the pacemaker alone.  My own heart rhythms are about completely stopped with LOTS of medicine so that it doesn't continuously go SUPER fast.  When my meds make it so my heart doesn't race away, my pacemaker is rate responsive but, by design, it doesn't go 200 bpm.  For 15 years, all activity has had matching rates but now the pacemaker alone makes it so I can NOT keep up activity well at all.  Does your own heart pick up the pace or does your rate responsive pacer bump up the rate enough to tolerate the activity?  I want my pacer to be able to sustain me but not sure how they go about it.  I guess my body is used to having the activity supported with a rate in the 200s and not even a safe rhythm.  I don't really know what to do with it.  When I talked to my cardiologist about it... he said... "that's gonna happen" after I had started to black out trying to shovel the driveway this winter.

[Laurie755]

Hi there l am a 49 ys old women & l had to get a pacemaker in Nov.2007 because l was told l had SickSinusSyndrome. I had passed out a few times,  l was lightheaded, short of breath & dizzy. Since l got my pacemaker l still have problems with the lightheadedness & short of breath when my pulse drops. I have had my pacemaker adjusted 3 times now & have been told there is nothing more they can do, which is really upsetting for me & my family as they worry about me all the time. I don't get these symptoms as often as before but when l do l am not able to do anything for 3-4 days. I wish l was as lucky as some of the other people that are on here. I was told that l was lucky that l suvived passing out so l try to look at that l might not be here if l didn't have a pacemker but it is still a little upsetting because l never know when l will feel like this

[erinspride]

hi i am a 29 yr old but have had a pacemaker since i was 16 yrs due to low heart rate i currently am on my 5th pacemaker due to the first two being brill but i got an infection in my 3rd op in 2007 this one pushed to the serface of the skin i had it replaced deeper in 2008 but due to spreading the exisitng infection this on pushed out right thriught the skin and have just been through(as in 23rd sept and 1st oct 2009 )two ops one to remove old one and the pocket full of puss around it and a week later another one to put a new one in the week without it my heart rate on occasion was as low as 35 bpm but i could still move about i am recovering well and will return to eventing my horses to scottish team level i am extreamly active and live life to the full it has no effect on what i can do please feel free to ask any questions  

[pingi3]

HI , I have had a pacemaker since 2003 and it has not interferred with any of the things I enjoy. Im am a 4 handicap in golf and still can drive the ball 300 yards at age 57. I lift weights every day. I just dont lift heavy anymore ,You can swim, jog ,  ride bike and still make love , so dont be worried . We jsut got back from Disney where I went on every roller coaster. Your still young , enjoy.

[babicka]

My husband got a pacemaker two weeks ago, needs it due to a heart block after two heart surgeries. Since then he can't sleep, he is tired, irritable, no appetite, loosing weight. His pacemaker is set to 80bpm. I suspect some kind of allergy or infection. Going to the heart specialist today.

[ireneo]

Here's your question back to the top.  bump

[imalovins]

I had a pacemaker imnplant two weeks ago due to both brady and tachy cardia..everything is fine so far but once in a while I feel like a bee sting on that side around the area..is this normal??

[bjorn41]

i m going to make this pacemaker this month .can you pls tell me the disadvantages  on it.  if you take  a knock on it the battery loose the contact?

[bjorn41]

i m 36 year oldand  going to make this pacemaker this month .can you pls tell me the disadvantages  on it.  if you take  a knock on it the battery loose the contact?

[mepacer]

First, I have been pacemaker dependent for nearly six years; with no heart history, I suffered total heart block.  After a period of up to three months when you can't raise your left arm above your head and learn to keep and use your cellphone on your right side, it's not a problem.  If you are into physical sports, make sure the doctor knows and can add padding for extra protection if needed.  You could communicate with many PM receipients on the Pacemaker Club site where they have many specifics on things such as settings, batteries, etc.

[mybear9554]

WOW you sound like me.  I have had 3 ablations with the last having 4 nerves and 3 pathways ablated.  Im 32 and going to have a pacemaker placed in a week.  It was also my best option

[mybear9554]

I had my pacer inserted last Tuesday ... and it has made such a difference

[mybear9554]

cardizem was better for me...beta blockers didnt touch it...but even so im now 32 and had the pacemaker for 3 days...and it has helped..there is a lot of messed up stuff with my heart and more ablations for me was dangerous as the phrenic nerve is too involved...anyways hope you find relief

[mybear9554]

i also have phrenic nerve involvement..and wished that i did the pacer long ago...its been 3 days and i feel better even though its still sore...I can see already it was worth it...I dropped EF 12% in a year from trying to do meds and also trying to find the right doc...so so fortunate to have found the doc i have...hope you are doing well

[samhikuama483]

Hello There! I am Sam Hikuama in Orapa Botswana. A Heavy Plant Mechanic living with a Pace Maker and would like to appreciate for the comments which bring hope and confidence to me when i hear that some lived successfully with Pace Maker for more than 10 years or so. wishing those disadvantaged like me a prolonged life.