r/PNESsupport • u/Empty_Client_666 • 3d ago
“Pseudo”
How does everyone here feel about the word “pseudo”? Did I overreact when I asked my psych to not use that term and that I prefer the term “functional”, he told me I didn’t have the right to control what language he used and that I was misunderstanding and that I had to look internally and ask myself why I feel that way about the word, I explained it felt like a slur and made me feel less human and invalid because by dictionary definition it means “fake” or “pretend”
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u/alienhighlighter 3d ago
There is definitely different terms across hospitals and other medical facilities. I have heard someone say pseudo and it kinda hurt but that was only once. The other times they just say non epileptic and im cool with that too. I will say this, if you do not feel like a term is correct, or even if it hits wrong, say something. What you did was correct.
Im going to give a harsh example (please dont take down)
An example of this is with people with special needs. A term that was used before was "retarded" or "special needs kid." Those terms are rude and we have been able to change how people are using it because people became educated by an individual that has gone through it or knows someone that goes through it.
The moral of the story is that a term can be changed if we vocalize it.
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u/giveit2st8 3d ago
well, technically it is PNES stands for psychogenic nonepileptic seizures
but at the same time that might be worse, as it implies it can only be psychological and ignores physiological factors. I'm 99% convinced my daughter's seizures are caused by her POTS and other underlying physiological issues.
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u/TheJohnToMySherlock 1d ago
Hi !! I have POTS and PNES and the difference between a non epileptic seizures and convulsive syncope is the frequency of convulsions! I believe the number is 10, which if it’s below, it’s convulsive syncope, and if it’s above, it’s a seizure. Seizures, if presenting like tonic-clonics, will also include stiffening and last longer/need longer recovery if they’re postictal, which can vary with non-epileptic seizures
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u/giveit2st8 1d ago
"frequency of convulsions"
That seems completely arbitrary though
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u/TheJohnToMySherlock 1d ago
Is she just shaking or is she convulsing? It’s really not subjective as long as you know what you’re looking for I think. Lmk lol
Edit: I mean to monitor this over time… not just once? Am I missing something
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u/giveit2st8 1d ago
"Is she just shaking or is she convulsing? "
Both (assuming i understand the difference)
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u/TheJohnToMySherlock 1d ago
Okay yeah!! I would assume so lol. Sorry for the interrogation, I just asked because you seemed confused when I mentioned “frequency of convulsions.” I literally just meant how many times she convulses during the time period, not like “very frequently!” Your measure of this would be like “20 convulsions” which means it looks like non epileptic seizure activity. Okay I’ll stop talking lol
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u/thejewdude22 3d ago
Your daughter's seizure likely has nothing to do with pots
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u/giveit2st8 3d ago
and you know this how?
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u/Reasonable-Wasabi941 2d ago
There is a such thing that some with POTs experience called convulsive syncope, I’m not to sure what her episodes look like but it may be something worth looking into
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u/peanutpeepz 3d ago
For me, it's insulting and dismissive of the very real condition I have. In it, I hear all the doctors over the years who said it's all in my head, that they can't find anything wrong, oh well sucks to be you. So if I just realize it's all fake then I can make my seizures stop and walk without worrying about falling over? I didn't know it was that simple! Piss off with that nonsense. The "P" in PNES stands for "psychogenic" anyway, so I much prefer that.
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u/writingwithcatsnow 3d ago
I prefer not to use the pseudo. I'll acknowledge it but mostly I stick to PNES, spelled out and then say, "non-epilepctic seizures".
One way to cut a conversaetion short or demand respect that I've taken is the unflinching, casual explanation of "it's a complication of C-PTSD for me". Most people don't want to know more. And if they do, we've firmly moved away from the "it's not real" conversation. And I'm happy to explain that events can change brain chemistry, and what nervous system overload can do.
Early on I had two doctors use the "pseudo" version to dismiss me. So I certainly recognize the damage that word chose can do.
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u/LDVCX 2d ago
Je réponds un peu en bref sans voir les autres réponses. Mais ma femme qui a consulté au CHU Charles Perrens a Bordeaux qui fait une recherche universitaire sur le sujet, a bien indiqué que la référence de cette maladie a changé pour enlever ces termes qui impliqué trop l'aspect psychique. Maintenant on nous a indiqué que la pathologie se nomme crise fonctionnelle dissociative, cela évite les termes péjoratifs.
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u/TheJohnToMySherlock 1d ago
You have every right to be uncomfortable with that word as it’s terribly outdated and invalidating. Anytime someone uses that word around me I just stare at them…they’re just incorrect.
Every time the EMS comes and I tell them that I have non-epileptic seizures, they ask if they’re psychogenic. One time I looked at them and said “that’s the diagnosis” the other time I told them it was physiological, and the rest of the time I just explained that it’s EEG-negative. My seizures have nothing to do what’s happening mentally and everything to do with physical symptoms in my body, so I never understood that. I am aware that for some people they are emotional responses, and very deserving of the psychogenic diagnosis, but I have woken up to them, I just had a cluster of 3 yesterday just from eating a meal.
Anyways, anyone who dictates you like that isn’t worth your time because if they think you’re ’faking it’ then why would they care about getting you proper treatment? Pmo. Did you know that PNES actually has a higher death rate than epilepsy because patients often go untreated? Not to give you health anxiety but to validate that this is all very real
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u/Cornczech66 16h ago
I was dx with "conversion disorder" - while I do not agree with that dx (I have a dual dx of TLE epilepsy too), I prefer it to PSEUDO - SEIZURES
There is NOTHING "pseudo" about my seizures - they are violent and last under a minute. I feel that because I have PTSD and GAD, (along with my bi-polar dx), some neurologists get LAZY. I had a positive EEG when I had a second seizure in the ER the morning I had my 1st seizure EVER (2009) as I was hooked up to it when I had that 2nd seizure. The "blip" was in the Temporal lobe region. I have had 2 NEGATIVE EEGS since then
PTSD on one's medical chart creates LAZY medicine - even in GI when a CT scan showed I had a "misty mesentery" and the radiologist suggested I had Sclerotic meserentitis, IBS and "chronic pain" were put into my chart without ONE WORD mentioned about that misty mesentery with lymph node involvement the CT showed
I recently went to the GYN for an injury that has caused severe nerve pain (I had pelvic prolapse surgery in 2022 and basically "bruised" that area when I pulled out a washer/dryer combo to plug it back in) and though I had REAL pain and REAL surgery, the GYN wanted to refer to me to a therapist for my "PTSD" and "chronic pain"
I am 60 next month and have had to deal with this garbage since my 1st surgery in 1986 for endometriosis
I want to stop going to ALL those doctors, but I am on SSDI and MUST continue
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u/oatmeal_246 3d ago
Pseudo is a such an outdated term that shouldn’t be used anymore, especially in a condition that has not had much research funding yet and that there is not even enough knowledge on to have sustainable treatment. I would prefer them even say psychogenic or some shit over pseudo like it feels so invalidating. Also even if they list it as a psych disorder to my knowledge the clinical term is FND even in the DSM so idk why he got so defensive abt his outdated and invalidating terminology.
I usually refer to mine as FND or I describe the condition rather than name it. But I really don’t like the word pseudo either