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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

Amy, thank you for

Submitted by PhilMay on Wed, 2017-10-11 - 13:06
Amy, thank you for clarification. Yeah I was under the impression that without the eletrodes.being under my skull they might have missed something, based on exactly what you said about proximity to a focal area. Bases on you're recommendation to see a specialist not just a general neurologist I've begun digging up providers in my area. What I don't understand though is that 2 video eegs I had done were at world class hospitals with what this qebsote.calls a level 4 epilepsy center. How on earth would the neurologists that saw me there would not have thought of that, notice but twice at 2 separate locations?

PhilAll the researching you

Submitted by just_joe on Tue, 2017-10-17 - 17:34
PhilAll the researching you do and all the videos you watch will not tell you whether it is a epileptic seizure or a PNES seizure. PNES seizures of any and all kinds look exactly like an epileptic seizure. They could be absence, partial or a tonic clonic. Oh and the meds you were taking when you were younger were also medications for epileptic seizures. Medications for epilepsy will not stop PNES seizures. In the last few years neurologists that specialize in epilepsy have been working with doctors associated with the PNES group in order to help diagnose a persons seizure. Some people are misdiagnosed  in both directions. My neurologist informed me of the working together so I do know it has been going on for some years.So do check with the specialist you see and do take the information form the hospital that did the video EEG. When I had my video eeg I informed them when I had the seizure and they could checked and yes seizure activity was there So do check

I finally have an appointment

Submitted by PhilMay on Fri, 2017-10-20 - 11:42
I finally have an appointment at Brigham and Women's in Boston, same place I had my first VEEG MANY many years ago. I totally get that putsch meds can't treat epilepsy and vice versa. That's why I don't really 100% believe the PNES diagnosis. If i had PNES, then the current medications and stress free life with TONS of good coping mechanisms should have stopped then from happening. I've had numerous injuries during them too, how can they explain that? I've hit my head so hard I needed staples, broke my nose on my weight bench, fractured ribs falling on objects and more. I was found half a mile fro. Hone at 3am half naked (just my boxer shorts) walking across the avenue. I consider myself a tough person but I'm scared shitless. I'm afraid to drive, afraid to climb, afraid to go near the street, afraid to swim, afraid to ski and more. Its literally robbing me of everything I love in life. I read up on alot of effects of epilepsy on people, specifically inerictal changes. I noticed that like myself, alot of people who have been diagnosed known epileptics suffer from radical mood changes between seizures when they have some frequency to them. I am a happy go lucky person with the tolerance of a saint, except during these times I lash out at people for little to no reason, I'm extremely happening moment and then all of a sudden I want to just die, or I'm infuriated and there is no apparent trigger. This has been my life for the past ten years. What my research has yielded that I believe to be applicable, possibly, is that TLE is often not found on even a video eeg, and that focal onset awareness impaired seizeres not only describe my spaceouts/wandering/automotisns, they can also generalize to a tonic clonic rather quickly but not always. I really feel like this better explains what happens to me. Especially when you factor in certain things like the injuries, incontinence  (I piss my pants sometimes, and once I shit myself), the severe confusion and exhaustion after, a feeling in my abdominal area sometimes comes on like the ground dropped out and I'm falling, there's just so much that doesn't point to PNES in any way at all.Then there are things that do, for example I've been told that more often than not when I convulsed my eyes are closed m, occasionally they are open. I just feel lost and unless they find epilepiform then a diagnosis of epilepsy does seem irrational imo. I definately don't want to be loaded up with toxins and constantly tested if it's just my own lack of self control. Obviously I'm not the only one who has/is experiencing this though 

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