Epileptic seizures, psychogenic seizures and downright fakers!

[Rikipedia]

Apologies for the grabby title but this is something that is causing me a vast amount of confusion at present. I'm a paramedic here in the UK and I really just wanted to hear the perspective of some of the people I've had the pleasure of meeting on CWE.

In my role I frequently encounter patients who have/are experiencing some form of seizure, most of the time we are called because the patient's immediate action medication (e.g. buccal midazolam) has failed to relieve the symptoms, the fit has gone on longer than ordinary, or the patient is in a strange environment without their partner/mother/kids etc to advise people what to do.

On top of this, I also encounter people with psychogenic non-epileptic seizures and pseudofitters, and this is about the point that I get confused. I completely understand that there are a lot of people who experience seizures in times of emotional stress, even losing consciousness in the process and I completely understand that they are not in any way feigning illness; I get confused here because in my "introduction to neurology: epilepsy" module at uni, they introduced us to the idea of pseudofits as "Those evil nasty fakers who're after us diazemuls".

Thankfully in the years since then this attitude has changed significantly, however.... we still do encounter people on a monthly basis who do fake seizures.... now these people are very few and very far between, and the process of empirically identifying them as faking their seizures is a difficult one, often done by the emergency doc in ED by power of suggestion or by getting the pt to admit to it. At present the terms "pseudoseizure", "pseudofitter", and "Pseudoepileptic" are still synonymous with "faker", and while I'm trying to change attitudes one at a time it's difficult.

I was really just posting this in order to gather some opinions, how do the good members of CWE see these terms, please do be honest as while i've scanned a number of websites a lot of them use some confusing allegorical terminology for people who may be faking, or may have non-epileptic seizures... Any clarification will be appreciated, and please feel free to speak openly!

Thank you all again
om svasti kamaala kshivi pula sambhava dharmadhatu gitsara svaha

 

[Nakamova]

Hey Rikipedia --

It's a complicated issue, particularly because once a patient is [mis]labeled in one or more way, that label can be very difficult to shake. And all three disorders -- epileptic seizures, psychogenic non-epileptic seizures, and deliberately-faked seizures -- require therapeutic intervention, though clearly the protocols are different. Not all ER personnel (and/or neurologists for that matter) can tell the difference between at least the first two. Plus, some people experience both epileptic and non-epileptic seizures.

If a patient has a negative EEG, some docs will immediately discard an epilepsy diagnosis. However, a properly trained neurologist knows (or should know) that while a positive EEG can confirm an epilepsy diagnosis, a negative one cannot rule it out. Some people w. epilepsy are only diagnosed after multiple EEGs, vEEGs, and/or subcutaneous EEGs. Some are diagnosed on the basis of clinical symptoms alone. Partial seizures that originate deep in the brain can be extra-tricky to diagnose. If a patient's seizures are mislabeled, he or she may suffer from delayed treatment as well as from stigma or hostility from friends and family.

Psychogenic Seizures.Diagnosis and treatment of psychogenic seizures has evolved over the last few decades. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523560/ and http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
But I think it continues to be poorly understood and poorly treated. As with other seizure disorders, contributing factors are not enough research, mis-educated or overworked neurologists, diagnostic difficulties, pressures from health insurers, etc. There's still little consensus about how to diagnose, as well as an overrreliance on EEG to rule it in or out. This is a great video about P.N.E.S.: https://www.youtube.com/watch?v=BMYsxd-0654

In an ideal world, a neurologist would work closely with a psychologist/psychiatrist to evaluate and treat a seizure disorder that might potentially have a non-epileptogenic component. Rather than making definitive diagnoses in an area that resists them, it makes more sense to have an integrated collaborative treatment plan that allows the patient, neurologist, and psychologist to collectively identify and treat all kinds of triggers/stressors.

Fake Seizures: Unfortunately, some people do actually fake seizures. Their motivations may be pathological (along the lines of Munchausen's) or they may be garden-variety attention-seekers. (And there's this guy: http://www.baltimoresun.com/news/ma...ci-dine-and-dash-seizures-20131029-story.html) Epilepsy and P. N. E .S. should be ruled out as definitively as possible before accusing someone of fakery, because the consequences of a misdiagnosis can be severe.

Non-psychogenic, non-epileptic seizures. Physical symptoms that have seizure-like components. See: https://en.wikipedia.org/wiki/Non-epileptic_seizure

So not only is the terminology you use important, but also when and how it gets applied to an individual.

 

[Rikipedia]

That's exactly the type of information I was after, thank you very much for that!
I think my issue comes from the fact that a number of my colleagues seem to dismiss all non-epileptic seizures as fakers and therefore attention seekers, unless it's proven to be an acute syncopic, hypoglycaemic or hypoxic event. I really just wanted to work to ensure that all types of seizure are correctly identified and that some of the stigma of the seizure fakers isn't applied to people with genuine medical conditions for exactly the reason that the consequences can be so dire.
You're quite correct, even the seizure fakers are quite likely in need of some form of mental health treatment (another stigma that needs to disappear), but i'm glad that there is so much knowledge around the subject.

 

[Cint]

In my role I frequently encounter patients who have/are experiencing some form of seizure, most of the time we are called because the patient's immediate action medication (e.g. buccal midazolam) has failed to relieve the symptoms, the fit has gone on longer than ordinary, or the patient is in a strange environment without their partner/mother/kids etc to advise people what to do.

On top of this, I also encounter people with psychogenic non-epileptic seizures and pseudofitters, and this is about the point that I get confused. I completely understand that there are a lot of people who experience seizures in times of emotional stress, even losing consciousness in the process and I completely understand that they are not in any way feigning illness; I get confused here because in my "introduction to neurology: epilepsy" module at uni, they introduced us to the idea of pseudofits as "Those evil nasty fakers who're after us diazemuls".

Thankfully in the years since then this attitude has changed significantly, however.... we still do encounter people on a monthly basis who do fake seizures.... now these people are very few and very far between, and the process of empirically identifying them as faking their seizures is a difficult one, often done by the emergency doc in ED by power of suggestion or by getting the pt to admit to it. At present the terms "pseudoseizure", "pseudofitter", and "Pseudoepileptic" are still synonymous with "faker", and while I'm trying to change attitudes one at a time it's difficult.

I was really just posting this in order to gather some opinions, how do the good members of CWE see these terms, please do be honest as while i've scanned a number of websites a lot of them use some confusing allegorical terminology for people who may be faking, or may have non-epileptic seizures... Any clarification will be appreciated, and please feel free to speak openly!

Ok, you asked......... PLEASE, stop using that ugly word... "fit". I've suffered from epilepsy for 40 years and have had SEIZURES, CP's and TC's, too. IMO, a child throws a "fit" when they do not get what they want.

I once was reading a book about a person who was "faking" seizures when I was in for a visit to my epileptologist (an epilepsy specialist). She told me she suspected one of her other patients was faking seizure just for attention. Something way beyond my comprehension!!

I HATE experiencing seizures and having other folks witness them. I've hated being carried away in an ambulance because I was unconscious and when I regained it, I was SO humiliated. I hated being in public for a while afterwards. Something that NEVER goes away completely! How I wish I would have known how to fake something so grueling and exhausting. My very first TC seizure was the one that damaged me for life. Read my story. Scarred forever!

Here is a bit of info from www.epilepsy.com:
http://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events

What are they?
Events that look like seizures but are not due to epilepsy are called "nonepileptic seizures." Some people prefer to use the term "events" rather than seizures. You will see the terms used interchangeably here. A common type is described as psychogenic (si-ko-JEN-ik), which means beginning in the mind. Psychogenic seizures or events are caused by subconscious thoughts, emotions or "stress," not abnormal electrical activity in the brain. Doctors consider most of them psychological in nature, but not purposely produced. Usually the person is not aware that the spells are not "epileptic." The term "pseudoseizures" has also been used in the past to refer to these events, but we prefer to avoid this term as it is not accurate and has a negative meaning.
It's important to know that some seizures that are not epilepsy could be caused by other physical problems. These are nonepilepsy seizures too, but not caused by a psychological condition. Further testing is needed to find the exact cause so they can be treated properly.

 

[Janus]

Yes. Thank​ you Nakamova. Great points. Nasty terms can hurt when unintended consequences are the.

 

[masterjen]

What isn't mentioned by anyone so far are the medical conditions in which a person can have attacks/episodes that look like seizures but are not. Usually the person with the condition will be able to say that what just happened was not a seizure. However in the case of a first episode, if it is a child who had the attack with no caregiver around to explain to medical personnel what condition the child has, or in a case where a person is unable to communicate, the episode may in fact be misinterpreted as being a seizure. These are not psychogenic seizures but may still fall under the label of "pseudo-seizures" by some because they look like seizures but are not. Some of the medical conditions that can produce seizure-like attacks are paroxysmal exercise induced dystonia, paroxysmal hypnogenic dystonia, paroxysmal kinesigenic dystonia, and episodic ataxia, and kinesigenic choreoathetosis.

 

[seagull]

I must thank uk para medic ,I called one for first time ever few weeks ago I had the most awful aura of all times I knew something really bad was going to happen,I laid down on way to loo could not stand everything was like jigsaw fortunately my phone in pocket and I just able see 999,the medic are on motor bike(he was based at fire station)door unlocked and he came upstairs the relief when saw him.He took command said let's stand up and with him I could all I could say oh thank you walked me to bed,I could do none of these things but with him who firm but kind.i could do none of these things before he got there.All obs normal he spent one hour with me I begging him not to go he did not go.as it was all passing off husband came home told him I just taken tramadol para medic laugh said e and Meds with tramadol would send you into awful high or hallucinations and I like fool had missed night dose because I gone to bed early with idea getting up to take Meds at 9 but 3am I wake up so thought not take it now because I get up at 6am but I laid in so not taking night Meds but taking tramadol at 3am it cocked everything up I did not think missing one dose of lamac would make any difference how wrong I was.i gone with out dose before when had virus puke up Meds.When medic realise he laugh said this not uncommon taking a tramadol on empty stomach or got e saidcalled out for that more one occasion. Got upset thought taking para medic off to me and someone dying I felt awful.He was so kind stayed with me until everything settled down.Now I thought he would think I was psycho not genuine person with e.At no point did he say that but he phoned my doc who saw me nextday.i am so grateful a para medic rather than ambulance or doc had come.He knew more than them all put together.My son came in who gp himself and para medic gave me over to him who had no intention of doing anything.my son told me later I was really lucky a para medic had come out not doc he said para medic far better in the field than anyone else he said doc been useless unless had para medic training himself and ordinary ambulance cart me off to hospital.God knows what that para medic thought of me at home later that day I did need him for something else as I say I never got para medic myself but oh so grateful I did.My goodness para medic as highly trained as docs even more so.i seen doctors panic before now but he was as cool as cucumber and I felt more confident with him than anyone else.He came out see me later in day I was in right state my son the doc with me when had accident as soon as saw the para medic he stood back saying I was in better hands my son was frightened but medic was fantastic but said hoped I never needed see him again.i have most regard gratefulness admiration for the para medic only negative is not enough of them.So in your comment about para medic making judgments to me as the patient he did not and went out of his way to get that over to me and I think that the key stopped my panic attacks he took them really seriously and had no intention of leaving me.i guess must see people with panic attacks and e related stuff.It reads like I patronising but I defo not.If he reading this and maybe he is as you have ,did his training at Norfolk and Norwich I live near he bye I can't thank him enough.he did mention or alluded to what you said but said no judgment calls are made mental or physical it made no odds both be treated the same both can be and are equally horrible.
When I was nurse they use treat over dose with contempt I got a angery they were treated we were not allowed to talk to them like human beings we told to point out sick people and they wasting a bed I never treated them that way I thought they of equally as ill even more so than many others on ward.i saw one girl who was said to have psycho hysterical e.just because they did not sz as book described they were treated abysmally. Saw status ignored and for discharge told wasting bed and sent to mental hospital stuck in a chair which they slipped off nurses stepping over them.One poor girl just because her sz were arching her back and she appeared to be looking at everyone and her aura was intense panic was given no medication and when they finally did epinuton prescribed because did not work they said putting it on.
Thank god things are changing,all this was happening in late 80s early 90s so short time.
Sorry preaching