So this afternoon I was fine and the all of a sudden my body felt like it was thumping..
And my abdomen was pounding... and making my whole body move. I lay on the floor as I thought my defib was going to kick in! It didn't and the jumps slowly subsided. When I tried to get up it started again.. .so I lay there some more.
I rang the ICD nurse who thinks it's my lead hitting a frettec nerve ( probably spelt wrong) and says it will now keep happening. It sometimes is felt as a flutter other times a full on pounding out of the abdomen . They are getting me in tomorrow to see if they can 're programme it... just wondered if anyone else has had this? Bloody scary but they assure me it's not dangerous.
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Heartlady1
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I had this when I first got my device and they fixed it by tweaking the settings, no problemo. Still get it occasionally if I'm sitting in a particular position but nothing major. Good luck getting it sorted x
Thanks Laura... the ICD nurse said it may be a lead catching a nerve... and every time I get up it starts pounding again .... it's weird. I definitely think I need a reset! I hope it is easily fix as yours was. I was panicking in case they had to operate. Thanks Laura for the reassurance... Will let you know if this bionic woman is fixed tomorrow. X 😀
Thank you Andrew. I hope its just a matter of tweaking as Laura says. And i must confess i had just done an Irish jig in the kitchen at work! Which I think has moved it. So on a positive front I had been feeling well enough to jig!! 😂
Lol... although they all laughed they assured me it wasnt my jig ( i am not so sure ha ha)
It is what it I'd I just want the op soonest... so I can get back to being bionic woman rather than Jack in a box woman ... I am jumping all over the place lol.
Yes, fingers crossed for a speedy procedure. Could they not deactivate that lead in the meantime? I'm wildly speculating here, rather than speaking from any stance of technical know-how, maybe that's not possible/advisable, but can't be very comfortable to be twitching like that. Good luck! x
I couldn't even walk Laura... I was jumping about everywhere. They then switched the lead off... then realised they had switched off the wrong one 😂 we did laugh while I jumped. So now yes it's the lead that has fallen out and has hit my nerve. So they have switched that one off and have reduced the other to only pace if I get below a certain number. So I am going to go back to feeling tired and less energy for now but at least I have stopped jerking and jumping.
For anyone reading this who is about to have this procedure... I am in the 1% of people this happens to ( I always knew I was special) and happy to have the op again to get me back feeling great. 😁
I just hope it's not too long before they book me in. X
I'm so glad they have made you feel better in the past so it gives you something positive to look forward to although I know you are a very positive person, good luck again.
Hi I am having same problem as you going sometimes from a flutter to a bigger kick. I had my device fitted in March. Did having the op again sort the problem out.
Sorry to butt in... Have you asked your pacemaker team to have a look at the settings? My device did a similar thing initially and just needed the settings tweaked to stop it making my diaphragm twitch. Now I get a twitchy diaphragm very occasionally (like yesterday) but it doesn't usually last too long or cause too much discomfort. If you haven't tried that yet, I'd make it your first port of call - takes a few minutes and is completely non-invasive.
Before Heartlady1 answers your query (I'm going to let her do that herself) please remember that she is the exception to the norm...aka VERY special and unique! [You're welcome, Heartlady1... x]
And yes I agree with Laura the first port of call is call your ICD nurses and get it checked out. If you ate getting glitters and an occasional jump this sounds like your device may just need a quick 're programming which takes 5 mins and then you will be sent on your way all fixed and mainly flutter free.
If ( and this is worst case scenario... only 1% this happens to) and your lead has displaced you will need to get it checked as they will have to switch the pacing off at that point.
However as you are describing intermittent glitters I would very much think it would just be a fine tuning of the lead to right the glittering. Do call and get it checked and do let us know x
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