My epilepsy diagnosis was changed to PNES after several normal EEGs. My psychiatrists insist I have epilepsy. My neurologists insist I have anxiety.
My neurologist referred me to a functional neurologist, but it’s $900 for a first visit.
I’m willing to try anything, but I have a feeling that $900 is going to get me a prescription for yoga to manage my stress…🙄
What have your experiences been?
#1: If this has happened to you, were you eventually able to get your diagnosis confirmed?
#2: I need a reality check - am I making a mountain out of a molehill? I don’t want to be dismissed as an “anxious patient”
Just to be clear, I’m NOT asking for specific medical advice or EEG review. I’m including a screenshot anyway to see if anyone notices something that might be *helpful* for me to highlight when I ask my neurologist to look at it.
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The spike:
I feel strongly that this event was a focal seizure (nystagmus followed by Todd’s paralysis). My family and I specifically triggered it with alcohol, psychedelic flashy videos, etc. The EEG software flagged that exact second as a spike (Fp1 - F7), which checks out with my eye movements. I think I see a “dip” before it and some waves stretched out after it. I have no medical training though!
Anyway, it was diagnosed as PNES. As someone who HAS had a psychogenic seizure before, I know this is pure bullshit. They said I was molested as a child and just have no memory of it. When I asked how it could be PNES since there was no bilateral shaking or body movement at all, I was basically told to buzz off and stop asking questions.
I’m not an expert, but I think a diagnosis should make basic sense to me as the patient. So, that’s why I suspect there might actually be something here…
Those doctors were my 2nd opinion btw and I haven’t seen them since then. I’m not asking them anything. I’m just referencing the data from that EEG.
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Asking my current neurologist:
My life is about to explode if I don’t get a miracle NOW. I’ve been unemployed for 8 months because photosensitivity has made working near impossible. I’m going to have to sell my house if I don’t get more seizure treatment now. I’m also dealing with a recent cancer diagnosis with surgery happening in a few weeks. I’m a walking skeleton from keto, but it’s the only treatment in my control. I’m almost truly overwhelmed.
I need further seizure medication because Lamotrigine has only halfway controlled my seizures. The only neurologist still willing to work with me is my 1st one who diagnosed me with Juvenile Myoclonic Epilepsy (which I am so certain was right on the money). I’ve been flying back to my hometown twice a year since he agreed to prescribe Lamotrigine for my migraines. He won’t prescribe anything more without EEG confirmation though. He understandably doesn’t believe me anymore. It’s complicated, but *actual* PNES is involved.
Btw just to be clear, PNES is not ongoing - it happened 2 times back in 2023 - I got scared the morning after my diagnosis. It turns out…seizures are traumatic…LOL…and I was being revisited by all the memories of near-death experiences that were now explained as focal aware seizures. I’ve been checked out by 2 psychiatrists who concluded that I do not have a mood disorder. 5 anxiety medications have failed, etc. it’s clearly not my primary diagnosis.
Anyway, he is a very good doctor and kind person. I still respect him even though I’m frustrated. I think he will listen *if* I show him evidence with solid potential.
I have an appointment with him in 1 week. This is my Hail Mary and I need to make it COUNT.
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The only objective thing I can think of is to point out the statistics of how many epilepsy patients also have PNES as a coexisting diagnosis.
Please help me with your thoughts!