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Anyone out there with a cardiac pacemaker & epilepsy?

Tue, 11/30/2004 - 19:14
Topic: Diagnostic Dilemmas and Testing
I am a 26 year old female, diagnosed with epilepsy ~ one year ago (Undiagnosed since the age of 5). My seizures slowly progressed in severity, therefore the late diagnosis (and multiple incorrect diagnoses...).I have searched the site for people that are similar in complications to me... I have a cardiac pacemaker that was implated two months before my "official" diagnosis of epilepsy. My heart stops after seizures (anywhere from 2 - 24 hours after a seizure), and luckily thus far, has kick-started on it's own everytime.My neurologists and cardiologists were puzzled, and had never heard of anything like me before. Thankfully I found one neuro. that had treated patients with symptoms like mine (only two others). Little information is available about these individuals, and even less I have located in textbooks and online.In summary, I am totally at a loss to further understand *ME*. Naturally I feel very alone, and am hoping to make contact with others that might have any bit of familiarity with all this. Thank you in advance!-Jessie-

Comments

RE: Anyone out there with a cardiac pacemaker & epilepsy?

Submitted by stregademare on Sun, 2005-06-19 - 14:52
Hi, I too have a dual pacemaker and have just been diagnosed with epilepsy. They say I'm an electrical nightmare and I have never felt so alone or lost because there is no information out there. This is my second pacemaker in 3 years and I should probably mention I am an anorexic but I do go into remission from time to time. No one knows what to do but put me on 5 medications and hope for the best. Bah Ha Ha I went through many years of that to find I had 3rd degree heartblock. I do find with the seizure my pacemaker kicks in which means my heart does stop also. If you want to chat let me know. Best of luck and wishes, Danielle                email addy dgaudiosi@cfl.rr.com

RE: RE: Anyone out there with a cardiac pacemaker & epilepsy?

Submitted by Gretchen1 on Mon, 2005-06-20 - 00:23
My heart stopped twice about 5 years ago from status seizures due to a severe drop in my potassium and a severe rise in my blood sugar. A seizure that goes on for 5 minutes starts running this risk. The risk increases at 20 minutes and seizing and in real danger territory at 40 minutes. There are a lot of good articles on cardiac electrical activity, blood chemistry abnormalities occurring with a seizure that lasts longer than 5 minutes and my sz's chronically do this. Anyway during those two times I had full blown CPR. But I had no heart damage, and everything seemed okay as long as I got immediate medical support when I had long sz's, which I did.BUT in the last year I think when I've had some status seizures? they've gotten the seizures eventually controlled but my QRS wave (cardiac) gets out of whack and I start throwing PVC's. What they've done then is put me on an external cardiac pace maker for maybe a day or two. Frankly I'm usually so out of it I'm not sure how long it's on me or much about it. I'm so wired up to so many things it is just another. But now they're talking about implanting a cardiac pace maker that will kick in only when my cardiac waves or tracings are out of whack from a sz. I'm frankly all for it. I'm alone a lot, my worst sz activity is usually in the evening when I am with someone but I can't count on that and in the last few months my husband has come home to me way out of it, gotten me to the ER and my cardiac activity is whacked, my potassium is bottoming out and my blood sugar has zoomed way high. It's the potassium bottoming out for many that is the danger.Again look up status seizure and read about blood chemistry changes, particularly potassium and blood sugar, during a seizure lasting longer than 5 minutes. It seems to me that the more I've done this? The easier it occurs too. I don't get too freaked out about my sz'ing but this one thing is very worrisome to me. I wish "they'd" get going with putting this in if it's something I'm going to need. I feel a little jumpy a lot of the time when I'm alone and start getting auras.Gretchen

Re: Anyone out there with a cardiac pacemaker & epilepsy?

Submitted by Silver5 on Mon, 2009-01-12 - 13:20

Hi Jessie,

 I live in the netherlands and also have a pacemaker and soon maybe also a NVS (nervus vagus stimulator) because my seizures keep coming even with a lot of medicines. I would be the first in europe to have both a pacemaker and a NVS. I have had several heart stops mostly when I had a status epileptic. I read a lot about seizures and heart diseases because when I was 36 I had a heartrate like 200 a minute. (now I can say it is probably from the medicine for seizures. ) If you have the choice please first let them put an NVS in you because that also regulairs your heartbeat. If that isn't enough you can always consider a pacemaker. I know the feeling of "feeling alone" I myself feel somethimes alone to Why me? what did I wrong? I don't know, but now i am 45 (sounds old feels like 28) and I want to do so much. Why?? that is spooking through my head, first the seizures, than my heart, my liver doesn't work perfect anymore, now an NVS surgery sometimes I don't know anymore when will it stop?

If you need to talk about it you can always mail me

paquita14@gmail.com

With regards,

Silver5

Hi Jessie,

 I live in the netherlands and also have a pacemaker and soon maybe also a NVS (nervus vagus stimulator) because my seizures keep coming even with a lot of medicines. I would be the first in europe to have both a pacemaker and a NVS. I have had several heart stops mostly when I had a status epileptic. I read a lot about seizures and heart diseases because when I was 36 I had a heartrate like 200 a minute. (now I can say it is probably from the medicine for seizures. ) If you have the choice please first let them put an NVS in you because that also regulairs your heartbeat. If that isn't enough you can always consider a pacemaker. I know the feeling of "feeling alone" I myself feel somethimes alone to Why me? what did I wrong? I don't know, but now i am 45 (sounds old feels like 28) and I want to do so much. Why?? that is spooking through my head, first the seizures, than my heart, my liver doesn't work perfect anymore, now an NVS surgery sometimes I don't know anymore when will it stop?

If you need to talk about it you can always mail me

paquita14@gmail.com

With regards,

Silver5

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