Pacemakers for Dysautonomia

[halbashes]

I'm just curious if anyone has had a pacemaker, or has had a doctor suggest a pacemaker to them as part of their Dysautonomia treatment.  I've had it brought up a couple of times, but my doctors all wanted me to have a loop recorder first.  I'm frightened by the prospect of an implantable loop recorder, never mind the pacemaker!  I dismissed it without much further thought, but I'm curious about others opinions.

[hadensmomma]

my son had a loop recorder inserted into his chest (it looked like a bic lighter under his skin) and it was very helpful in monitoring his heart and showing the drs exactly what his heart was doing at all times. it was a 5 minute procedure to put in and take out. we have also been told a pacemaker is in our future if the medicines do not work. i'm curious to know more about the pacemaker and the pros and cons...

[mandymoo]

It's been brought up to me too but I've been avoiding it like the plague!

[dolfnlvr]

Thanks for the info.  I'd really never heard of that before.  

[bnlgirll]

Well I got the heart pacer after 5 heart caths to burn abnormal areas. The last year I was hit with severe nausea and vomiting. They said I have severe Gastroparesis with total gut dysmotility. In out terms basically my stomach and intestines stopped working. So that gastric pacer is hook at the base of my stomach and the stimulator part is hook to my pyloris. The pacer stimulates my pyloris to open to pass food through to my intestines. Then I take alot of meds to get everything to pass ok. So I ended up with two. I do feel the one in my heart pace when it is in it's fast rate response. So when I start walking fast the pacer kicks into walking pace and starts pacing me faster. Thats really the only time I feel it unless I have a fever then I get palpatations. So thats how they work.

[halbashes]

I too am curious about the two pacemakers.  Are they working well for you?  What exactly does a stomach pacemaker do?  Do you feel the pacemakers actively pacing?  All of this is unknown to me since I've never had a pacemaker.

[halbashes]

I'm rather frightened by the prospect of a pacemaker as well.  I also have LQTS, so if I ever got a pacemaker implanted, I'd probably end up with an ICD as well.  I faint about four times per week without medication though, so maybe I should be less childish about it.  I'm in no rush though, that much is for certain.

[dolfnlvr]

I have never heard of a pacemaker for the stomach.  Please tell me more.....I'm really curious...........

[bnlgirll]

Try having 2 pacemakers one for my heart and one for my stomach

[dolfnlvr]

They suggested it for me at the age of 18.  Are you kidding me???  A pacemaker??? You must be out of your mind if you think an otherwise healthy 18 year old who has fainted 7 times is going to be okay with the prospect of a pacemaker.  

They put me on norpace (the pacer probably would have been safer given the side effects) and it seemed to work for me.  Two years later, I came off the meds.  I haven't been "re-tested" on the tilt table since '99, but am avoiding the idea because they'll probably bring it up again.

It's just the idea of it..........probably make life easier, but it sounds awfully scary.

[bnlgirll]

Hey I have heard of pacemakers needed for dysautonomia treatment for when your heart rate drops along with your BP. I had a pacer inplanted after bouts of ectopic atrial tach. After 5 heart caths and 4 ablations they nuked my Sinus node and I got the pacer. I'm kinda glad I got it because my bp get low alot and I know normally the heart rate gets low with bp. I have heard of the loop recorder and if it were me. If it gave the dr's the answers they need to know I would do it.  Good luck