Psychogenic non-epileptic seizures (PNES)

Posted by stuckonu @stuckonu, Sep 28, 2019

Last evening while watching Inside Edition, there was a story about a woman who would forget that she was married and didn’t know that the kind man who would visit her in the hospital was her husband. I’m not positive that this is what they said it was but moment after seeing the story I tried doing a search for yesterday’s Inside Edition which is available on YouTube but yesterday’s show was not posted yet but there is an Inside Edition website and the lead story was there but it wasn’t clear if one could watch the whole show, so I did a site search but not writing down the name of the condition the clue I remembered did not present me with an option that made sense. I did recall that in the story they said at one point “ non-epileptic seizure “ so I tried typing that in a search engine and much to my surprise and delight it seems that “ non-epileptic seizure “ is actually a way of describing certain types of events that result in symptoms that are real but it seems to me that this is a great example of how illness’s, maladies, conditions that don’t have an official name can quickly become the generic “ it’s all in your head “ condition.
I’m specifically interested in this state that I find myself in more and more frequently when STRESS effects me and my first specific complaints are horrible headaches, tension in my neck and head and blurred vision which in and of its own right is not just “ blurred vision “
This post like so many of my posts can easily turn into a very long post because as I think about what I’m attempting to say here has so many ways it can go and to me it’s all important to be exacting in the description of details.
So I want to mention the subject of this post:
“ Psychogenic non-epileptic seizure “ because this is the name I found while doing my search. But while attempting to explain the vision problem I realized that “ blurred vision “ seems to be generic way to say that your vision is not clear. That said I notice that one kind of “ blurred “ is like attempting to see through a windshield that fog up and remains that way until it is wiped with anything but a clean towel seems best to me. I’ve also noticed that sometimes it’s foggy on the inside and other times on the outside. Since I actually now about this meaning what causes each type of “ condensation “ I can confidently tell others how to address the condition which would please me if a doctor understood this metaphor and they could apply a similar approach to my saying :” my vision is blurred “ can you see why this metaphor is a good one? “ Most times over the years as soon as I say “ blurred vision “ most doctors but especially most ERs write in your records that you need to see an ( spell check is not helping me here so let me say ‘ an eye doctor ‘ optimologist “ in my humble opinion this is why certain condition take forever to name accurately because the other ways that my vision is impaired is double vision, Smokey vision, cross eyed vision, and other ways I could describe what is not “ normal “.
I know that digressing into this one symptom and explanations that are often not heard nor are they understood ; hampers the main subject which which has other symptoms.
I’m not a doctor I often say but that does not mean what I’ve discovered and or how I break things down and self examine what is going on is not very valuable if the medical personnel take the time and respectfully listen to what I’m experiencing.
It would be great if someone here “ gets “ what I’m saying and can help me strategize a plan going forward. My shrink actually used my vision problem to mock me by saying” look how long you’ve been complaining about your blurred vision and we’ve done all kinds of tests and find nothing; in fact the eye doctor says your vision is remarkable for your age and 20/20 is unheard of SO WHY ARE YOU COMPLAINING? “ “ you can SEE ( ha! ) why we say your blurred vision is all in your head “ How would that make YOU feel?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Leonard | @jakedduck1 | Sep 28, 2019

@stuckonu
Hi there,
I’m not quite clear what it is your saying, sorry, I’m rather simple-minded🙁
As far as I know PNES or Psychogenic
Non-Epileptic Seizures are actual seizures usually Tonic-Clonic but occasionally Focal that occur without abnormal brain electrical discharges. They are however caused most frequently by Psychological factors. People with Epilepsy have seizures because of abnormal electrical changes in the brain. Whether right or wrong I got the impression you were saying basically Pnes can be used as a diagnosis for any unknown or undiagnosed symptom. If that is correct could you direct me to the website you found?
Take care,
Jake

stuckonu | @stuckonu | Sep 29, 2019

In reply to @jakedduck1 "@stuckonu Hi there, I’m not quite clear what it is your saying, sorry, I’m rather simple-minded🙁..." + (show)

Hi Leo, what am I saying? Hmmm, I’m saying that often I have symptoms and there seems to be a few patterns that guide me down long circuitous paths that take time and when I find something as I did on Inside Edition and until I can find and watch that actual show with pen in hand I would not bet my life that what the said that this woman had was in fact PNES, however that term was used to point out a few things1 the epilepsy is not the only cause of seizure, 2 the whatever it is that she has leads to her not knowing her husband 3 talk about stories that meander with side stories that may or may not be about what this woman has they show a clip from a movie with Drew Barrymore and Adam Sadler in which she would wake up in bed with him and scream because she didn’t recognize her husband, then there’s me trying to say to the group as well as my doctors and they look at me as if to say: “ I have no Idea what you are talking about “ So Leo, it’s not just you who tells me that they don’t know what I’m talking about.
Here I can take this in 2 direction eventually wind up back at the beginning.
I’ll wing it. My VA PCP has argued with me for ten years often telling me that what I’m telling him doesn’t make sense. I don’t know the actual number of times that he’ll test for something and get nothing that he can officially call something that I can write about here. For about three years he couldn’t find a reason for my vision problems sending to to the eye doctors who often said I was 20/20. I was telling him that I was being poisoned by my well water. Things were getting so bad that I hit a kid on a bike with my car. It wasn’t bad but scary. Nothing I told him led him to check the results of his testing. Then he called with the news that I had an incredibly high level of ammonia in my blood. He explained to me that I was an anomaly because the VA policy was to not check for ammonia if liver enzymes were normal. So in spite of him asking to check for ammonia the VA thru his request out. But guess what? He didn’t check to see if the test was done. In stead he depended on the lab contacting him or that a quick scan of my results would have an H that the system would earn him about. After three years of complaining and presenting info, reports, bringing water samples in etc etc He either sent my blood to another lab or called the lab to insist that they check for ammonia and sure enough I was so poisoned that I couldn’t think straight. It took almost a year to get back to normal. Do I have liver damage from that or some other consequence? Who knows.
When my vision started going bad again I was back at the eye doctor. The best feedback I could give them is that stress is triggers headaches vision problems and memory lose as well as dumbness I can’t find words I call people by the wrong name etc. Then it gets better usually from intellectual stimulation, meditation, yoga and work. But not one doctor has taken this seriously enough that I don’t think that I’ve been through this before.
I don’t know what’s wrong Leo but I told both docs that when it happen I experience what seems like a concussion, I have all of the symptoms I mentioned and I get lazy and apathetic. I don’t want to answer the phone and I have a short temper.
I’m giving these guys every detail I can but I’m feeling like the can getting kicked down the road

Lisa Lucier, Moderator | @lisalucier | Jan 24, 2020

Hi, @stuckonu - wondering if you are still having blurred vision, headaches, tension in your neck and head, and other symptoms that were making you think you could be experiencing psychogenic non-epileptic seizures (PNES)? If so, have you gotten closer to a diagnosis?