Discussions By Condition: Nerve conditions

please help....NCS vs epilepsy ??

Posted In: Nerve conditions 6 Replies
  • Posted By: Anonymous
  • October 30, 2006
  • 04:41 AM

Hello. Wondering if anyone can help me out?!

I've been diagnosed with epilepsy for seizures, - but even the doctor doesn't think its epilepsy! He called it epilepsy like activity.

I had a normal CT MRI and EEG but the seizures were still there. and very often too. so he put me on epileptic meds and miagraine meds. that was sept last year. i've tried several of them. but no change. and i'm fainting more often now. I'm only 22. And before this was pretty healthy! I can't help thinking that these epilepsy drugs when they're not sure if i have epilepsy. just epilepsy like activities, might be doing more harm than good?

A friend was telling about um i think its called Neuro cardiogenic Syncap or something like that? Apparently people can have what looks like a seizure but it actually stems from the heart not the head or something>???

If any one knows anything about this NCS thing please reply!
Is it something that I should be willing to discuss with my doctor?
Really do please reply if you can be of any help. I'm getting scared. The more seizures i have the worse i feel. If this NCS thing could be whats making me feel so gross than maybe its worth talking to the doc about?

Please help!

Reply Flag this Discussion

6 Replies:

  • I've been doing extensive research on seizures ever since my son was diagnosed in April of this year. I refuse to medicate my 2yr old especially after coming across numerous of articles stating the multiple adverse affects that epilepsy drugs can have on individuals. I have found that an overload of toxins, whether it be toxin built because of; lack of sleep, improper elimination of waste, drugs and alcohol, or even a lack of calcium and magnesium, will cause the neurological part of you to malfunction. I have also read that many individuals with your symtoms were misdiagnosed with epilepsy when they were really suffering from fainting spells. It is in your best interest to continue doing what you're doing. Keep asking question and doing your own research and considered getting off those epilepsy meds. Don't let your doctor treat you unless he/she knows what their specifically treating.Good Luck!
    Anonymous 42789 Replies
    • October 30, 2006
    • 02:21 PM
    • 0
    Flag this Response
  • Hello. Wondering if anyone can help me out?! I've been diagnosed with epilepsy for seizures, - but even the doctor doesn't think its epilepsy! He called it epilepsy like activity. I had a normal CT MRI and EEG but the seizures were still there. and very often too. so he put me on epileptic meds and miagraine meds. that was sept last year. i've tried several of them. but no change. and i'm fainting more often now. I'm only 22. And before this was pretty healthy! I can't help thinking that these epilepsy drugs when they're not sure if i have epilepsy. just epilepsy like activities, might be doing more harm than good? A friend was telling about um i think its called Neuro cardiogenic Syncap or something like that? Apparently people can have what looks like a seizure but it actually stems from the heart not the head or something>??? If any one knows anything about this NCS thing please reply!Is it something that I should be willing to discuss with my doctor? Really do please reply if you can be of any help. I'm getting scared. The more seizures i have the worse i feel. If this NCS thing could be whats making me feel so gross than maybe its worth talking to the doc about? Please help! Hello. I am also 22 & have had one actually seizure... that I definitely know of (there are many types of seizures... I didn't realize myself but my sister is a nurse & works w/ seizure patients). Anyway, I too have had many fainting spells. However, I have had many more different... umm... I guess you could call them symptoms. I am not sure how far this will go. I have to get an MRI. My EEG showed some signs of "abnormalities" but we don't know what that means yet. Are your seizure activities quite different from your fainting? Do you have many seizure activities or is it mostly fainting? If you would like I could share w/ you more of my symptoms if you think it would help. All my prayers & God's speed!
    inquiring 4 Replies
    • October 30, 2006
    • 07:39 PM
    • 0
    Flag this Response
  • HI manda. i can relate to your story.I'm 21 female and I've been diagnosed with epilepsy. More than a year ago I was diagnosed and was told that things would soon be 'managable'. 4 drugs later and a brand new diagnosis of vascular migraine as well and i'm feeling worse not better. For something that was suppost to be easy enough to treat, I can't help feeling a bit uneasy that a years past with no results. I can't work. can't drive, can't take a bus by myself! I wear info on my wrist every where i go like a dog tag and my independence is shattered.All the EEG tests and CT scans etc came back normal and it was put down to idiopathic epilepsy. - basically meaning it has no reason what so ever! :mad: gee great. I'm getting married in 10 months time, i just want it to all go away!:o I'm still having seizures, rigid sessions, trouble finding words,drooling and completely off the planet 'stunned mullet' style after a seizure. i'm haunted by nightmares. i feel sick all the time, i feel so tired and weak at times i'll sleep for days, and thanks to this new migraine medicine i can add hallucinations to the list. I'm (without knowing) agro towards my fiance' and have tried to hurt myself while 'playing a game' i'm starting to think i'm going insane! I feel like such a mess. my normal 'self' is being consumed by dread and drugs. My main worry though is fainting or 'drop attacks' coz i find myself at the strangest of times flat out on the floor. Fainting i've been told isn't normally an epilepsy thing, and your story got me thinking.My mum keeps wanting something else to come up, since the epilepsy treatment obviously isn't working as it could be wrongly diagnosed. but the seizures are sure real. My specialist put it down to 'epilepsy activity' as you called it because of the frequency and duration of the episodes. I don't know what your 'wierd symptoms' were, but if they're anything like mine then i can understand why you're scared about the diagnosis being wrong perhaps. i think its vital to always ask questions and know as much as you can. Thankyou and i will do so as well! :eek:
    had_enuf 2 Replies
    • October 31, 2006
    • 03:54 AM
    • 0
    Flag this Response
  • Thanks 'inquiring' i'd love to chat more. Its a real emotional thing for me and it could be nice to release some stress to someone who understands. best of luck with all your tests and things. prayers back at ya'Kyatay' thanks for your story too. i think kids and drugs should be avoided at all costs and its great that you're doing research to help your son. if you find anything on NCS let me know! :)'had_enuf' seems to have had a simular experience to me. thanks so much for your story. Please keep in touchsorry i didn't word it very well in my first post, but i was having seizures not just fainting, its just that the fainting part frightens me more i guess because it makes me feel so gross. Im unaware of the seizures and sleep through the migraines, so maybe the fainting just bothers me out of the simple fact that i know about it.??but i'll definately keep asking questions ;)
    Anonymous 42789 Replies
    • October 31, 2006
    • 04:09 AM
    • 0
    Flag this Response
  • Hello manda! I would love to keep up w/ you. I just went to the doctor today & he has ordered another EEG, an MRI, and has put me on meds for "epilepsy activity". He said he just needs to get down to what is causing all of my symptoms. If you would like to email me & keep me up to date... my email address is charityfaith02@hotmail.com... i would love to hear from you.
    inquiring 4 Replies
    • November 1, 2006
    • 01:05 AM
    • 0
    Flag this Response
  • Hi! my email is mandz_funky_chicken@hotmail.com . thanks again for your support. hope you're doing ok. -manda-
    Anonymous 42789 Replies
    • November 2, 2006
    • 01:47 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.