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Considering invasive eeg

Wed, 10/11/2017 - 01:29
I need to run something by all of you . I am 36 years old and the past decade of my life has been riddled with a variety of seizure like activity. I have an extensive mental health history as well dating back to my early childhood. To clarify, I was in clinical trials for Ritalin at age 5, and by 18 had been prescribed over 100 different medications for various reasons. When I was a little okder, still not a teenager, I remember doing numerous surface sleep deprivation eeg tests and at one point I was put on heavt doses of gabapentin and depakote. I don't recall at all but my parents told me I would space out and be unresponsive for periods of time. But i was never diagnosed with epilepsy. I remember "spacing out" in high school and when I'd come to my shirt would be wet with drool. I also never daydreamed during my spaceouts that I recall. Anyway depakote made me gain almost 100 lbs so when I was 17 i rebelled against all my meds and doctors. I lived the next 10 years of my.life without taking 10-20 pills a day or going to my doctors every month or no monthly whatever. I felt free and never looked back. One day at work when I was 27, up on a lift in the August sun i was holding a beam up to be hiltied into a sofet when i started getting a tingling sensation that started in my toes and walked up my leg and a metallic bloody taste in my mouth.then it all subsided and a massive headache came on immediately. A few hours later I went to pickup some paperwork at the city hall on my way home from work and was standing in line, next thing I know I'm in a hospital bed. They told me I fell to the floor and convulsed for a little bit. I was having a very hard time regaining my senses so I was kept for the night. During my sleep that night I had another conclusive episode and they put me on IV drip AED that burned in my veins I don't remember what it was called but wow was it unpleasant. I was then sent to Brigham and Women's Hospital for video eeg monitoring. I was there for a week and had one episode on video but it wasn't like the prior 2. I had an intense feeling like I was moving 1000 miles pet hour but nothing was moving at all. That's all I remember then the next day they sat with me and said I have PNES. They said that on video I showed all the signs of a focal impaired awareness seizure but that the eeg portion showed no epilepiform at all. I trust most doctors and these people seemed legit so of course I followed recommendatio ns and went to a shrink. I might have rebelled against medical care when I was young but im older now and this stuff happening woke me up. I've been on Prozac for depression and kolonopin for anxiety for a long time now, and let me tell you im one very happy stress free well medicated dude, but im nowhere near episode free. In the past decade I've had days where they cluster and months where I'm episode free, but there is zero correlation to life events that would indicate PNES and a stress trigger. Furthermore the episodes I've had that were witnessed have varied between 3 main types and sometimes a combination of 2 almost like a transition. I've been found numerous times at random hours just wandering unresponsive to external stimuli followed by a state of confusion, I've had motorized automations while being in a trance like state and also had full on unconscious conclusive episodes. Over thebuears ibmve had several more video eeg none capturing any episodes so my diagnosis remains in this PNES state, not getting better at all. I have to wonder, is it possible that since I've only ever had surface (scalp) eeg that they couldn't detect the activity? Perhaps it's time to bite the bullet and request invasive subdermal eeg long enoigh to capture one? I've watched countless videos of every seizure type I could find, and one thing remained the same no matter what i watched, my movements are more consistent with epilepsy than with pnes, as a matter of fact I've asked people to compare them who have seen my episodes and they also agree that no pnes video we watch looks like what info through, yet the confirmed epileptic seizure ones definately do. I'm at a major loss here. I do not doubt that video eeg is reliable, but is it possible that only using surface eeg isnt capturing weak epilepiform? Should I accept the diagnosis or pit myself through more bullshit for nothing. You all have infinitely more experience than I so what would you do in my shoes?

Comments

So, I just had my first

Submitted by Erinking1129 on Tue, 2017-12-26 - 14:26
So, I just had my first seizure, ever months ago and am still learning. My neurologist told me that I have simple, partial seizures and I've also had automatisms and even paralysis and trance like states. I did a 72 hour, video EEG and had an episode, but it didn't show on the EEG. I've even had one in front of my neurologist, in his office. He still really thinks they're simple seizures. I've asked multiple times why they wouldn't register on an EEG and he said it's really hard for an EEG to pick up where simple seizures are firing off from. Super frustrating, but maybe if you're also having simple ones that's why??? I hope you find answers too. Let me know what they figure out, please. 

I'm curious what kind of

Submitted by Erinking1129 on Tue, 2017-12-26 - 14:26
I'm curious what kind of drugs only treat a partial? My neurologist believes I'm having simple partial seizures, but man EEG didn't pick up the one I had during it. He said that's normal as it's hard to figure out where they're firing off from. They're almost always on my left brain based on the right side of my body always being what's affected and the emotions that I can feel during the episodes but they immediately go away once it's passed. Im on my 3rd med. I'm still breastfeeding my baby so I'm taking that into considering med wise, but so far the first two caused itching/stinging on my eyelids and even a rash on them, as well as feeling sunburnt. So my neurologist now has me on lamotridine and I have been on it a little over a week, but have now been a couple days without one although I almost had one last night but feel I headed it off. So, I guess my question is if I keep taking it and it controls them then we know they are simple seizures? (I'm aware lamotridine also treats BI polar disorder but I've never had that). 

My mom brought up the

Submitted by Erinking1129 on Tue, 2017-12-26 - 14:26
My mom brought up the possibility of PNES to me as I had my first one when my daughter was 3-4 months old and had just gotten over PPA. However, off all the anxiety medications, that's the best I've felt, apart from that I get agitated easier and the fatigue. I don't feel overly stressed or anxious. I get super exhausted and irritable though and fatigue seems to be a trigger for me. I had multiple small simple seizures coming out of anesthesia after a procedure a couple days ago when I was still sedated so I don't think that seems indicative of PNES because I wasn't even aware yet, and was totally fine beforehand. I tend to have more at night (waking up to nurse my baby) and later in the day when I'm super exhausted. Not sure where my fatigue is coming from, but am undergoing labwork and diagnostic testing for GI issues as well. I'm responding because I feel that I can relate. I'll go from totally fine to extreme anger and irritability and it seems like it's worse on days when I'm more fatigued and my seizure activity is apparent. Nothing has shown up on any MRI or even the episode I had during a 72 hour video EEG. It didn't register but my neurologist watched it and thought it was a simple seizure. I had been on Zoloft and Wellbutrin for 10 years and got off Wellbutrin after a number of weeks postpartum when I tried to get back on and it's actually what gave me anxiety. I'm wondering though if maybe my onset is so late in life because it's somewhat of a stimulating medication and helped me from being fatigued all the time. It's all so confusing though. 

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