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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

they were wrong to think EEGs

Submitted by Amy Jo on Wed, 2017-10-11 - 03:17
they were wrong to think EEGs exclude epilepsy, they only exclude generalized seizures like common absence and then people can wrongly assume that’s sufficient when some complex partials can seem like absence. and a very good pdoc would likely catch you might be having real seizures. you got the short end of a few sticks there.talk to an experienced epileptologist! keep a log of events. consider trialing a drug that treats partials instead a different EEG. our child’s surgeon says iEEG is hit or miss, I would bet it’s frustrating when they are sure about the epilepsy but they can’t get the focus. he says does happen sometimes. they would only put the grids in if they would already be on the surgery track. so the nasal whatever EEG leads might not do the trick. 

I'm not sure I understand you

Submitted by PhilMay on Wed, 2017-10-11 - 04:06
I'm not sure I understand you, are you saying that yes the scalp eeg could have missed the epilepiform and that nasal leads could provide the accuracy without invasive surgical proceedure?

No EEG can provide complete

Submitted by Amy Jo on Wed, 2017-10-11 - 12:50
No EEG can provide complete accuracy for every patient. All EEGs have limitations. The deeper a recording mechanism gets (AND closer to a focus), the better the chance an EEG catches something. I'm guessing now that you were thinking of the maybe sphenoidal leads and not anything else - more comes to my mind when someone says invasive. Intracranial EEG (iEEG), nasopharygeal, etc..That's why an epileptologist is a better choice, they understand the limitations of EEG. Your description alone is a major factor in diagnosis and an epileptologist is a doc who 'gets' that. They are best suited to determine epilepsy from epilepsy mimics. Alternatives to invasive testing can include trialing a drug that only treats partials; it can clarify things.

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