pacemakers

[taylortotmom]

Hi everyone. I return to my cardiologist next week and the pacemaker talk will likely present again. I have been pushing for one for a couple of years but my cardio wanted to wait as long as possible. For those of you with them, has it really helped? I have MVP with NCS and tachy-brady. I know that my cardio is consdiering a dual chamber pacemaker for me. I really don't know what this means. The point of the pacemaker for me would be to try to reduce the amount of NCS. I have a port-a-cath which allows me to have iv tx daily which helps but boy, do I feel it when I don't do it. So, has a pacmaker helped anyone of you for your dysautonomia? I've read previous threads about ablation having negative effects but I have tachy and brady. Anyone else out there in this position and chosen this treatment? Thank you!

Carmen

[Dawg Tired]

I got a dual chamber pacemaker in February 2003. No meds seemed to help so it was the last resort. It will not help your tachy, it will not reduce your arrythmias. It will only keep you out of the valleys from the brady episodes. It has been *NO* help with my NCS but I was in a position where my LTD was going to be cut off if I refused treatment. of course, once I got the pacemaker they cut it off anyway and I am still fighting it but all in all - no, it hasn't helped me. There may be some on here it has helped but I have asked in the past and no one has really replied to me. I still have pain at the surgical site and cannot sleep on my left side. Which, in my case is bad because I slept on my left side for 43 years so now if I get 2-3 hours of sleep a night i'm doing good.

Then there is the cost of upkeep - telephone checks every 3 months for the rest of my life plus yearly visits to the EP. When I got the pacemaker I had insurance, then I had Medicaid but Missouri cut out the Medicaid so now all I have is Medicare so the cost is basically out of pocket. $33 each for the phone checks and I haven't yet recieved the bill from the annual visit to the EP - and just what will I be trying to pay if they decided the durn thing has to be replaced?? I am trying to live on $647 a month SSDI. (And that is too much to qualify for Medicaid!)

Supposedly it is working 98% of the time - but nobody - even at Vanderbilt - could explain why it had not improved how I feel or my quality of life. I am still just as terribly fatigued, pre-syncopal and fainting just as much as I was.

[Michelle Sawicki]

There is some information on pacemakers/NCS on our NCS page:

http://www.dinet.org/NCS/ncs.htm

Michelle

[goldicedance]

I have a dual chamber pacemaker. It does not do anything for the tachycardia. What it does help is for bradycardia. My pacemaker has lasted 6 years but I am 100% paced. The amount of usage determines the battery life. I go to my cardiologist every 3 months for a pacer check.

[taylortotmom]

Thanks for your responses. Goldicedance- does the pacemaker help your bradycardia sxs? (I get NCS from the lowered BP and pulse moreso than the tachy). I'm 31 with two young children. The iv's help but will the pacemaker? Of course, I assume I will still have to take a betablocker to help with the tachy. My cardio really wants to avoid doing the pacemaker and I'm starting to see why.

Carmen

[AJVDK]

Carmen,

Hello, I had a dual chamber pacemaker put in July of 04. THe ooacemake has helped with the bradycardi as my heart is paced 97% of the time. The bad thing is your heart will still take off and race when it wants too. I have phine checks every 3 months and a vist with the EPS Doctor once a year. It not so bad, but I was looking for a big diffence when I got it but in, I thought it was goign to change they way I felt only to but to much hope into it to be let donw. Now pacemakers are get and I am gald not to have my heart slow down any more as my heart rate is set at 70 beats. Just don't but all the faith in the pacemaker as I did. I was a big let down for me. But keep it mind this was just my feelings, they have helped alot of people!

Goodluck with what ever you do!

Amy

[Rita]

Some of the doctors have discussed that I get a pacemaker; however the eletrophysiologist says that I am too young and the risk sometimes out way the benefits. I am not so sure that I would really want to have one unless there was no other choice. My medical bills are already high enough. I would discuss the possible benefits verses the risk before I would receive one and then use your own judgement. From what I have read they really don't help with ncs.

On another note I also thought my ncs was caused by my blood pressure , but after checking my blood pressure and heart rythm lately I have noticed my heart rythm changes alot more often than my blood pressure. I do this by checking my blood pressure sitting for 10 minutes, then standing for 2,5,and 10. This is how they do it in research and they also noticed this with me. They actually think that I am having trouble with orthostatic intolerance rather than ncs. I f you look up oi you will see that syncope is a side effect from this. I hope that you find something that will help you I will be posting the results from my study at venderbilt of what helps me toward the end of September.

Good Luck,

Rita s

[goldicedance]

The pacemaker did help with the bradycardia. There were times, without the pacemaker, that I felt like there were great pauses in my heart beat and there were. It sometimes felt like I was on a rollercoaster going downhill really fast. I have a superduper dual chamber pacemaker. I had a botched sinus node ablation which caused the bradycardia and then the junctional tachycardia. My first pacemaker lasted 6 years and I am 100% paced both in the sinus node and the junctional node.