Mindfulness-based therapy for psychogenic nonepileptic seizures, 2019, Baslet, Ehlert, Oser and Dworetzky

Paywall, https://www.epilepsybehavior.com/article/S1525-5050(19)30736-X/fulltext
Not available via Scihub at time of posting

 

I know someone who was diagnosed with "psychogenic nonepileptic seizures". I feel like it's the MUS category of epilepsy, created to dump in all "unexplained" forms of epilepsy: anyone with outward signs of epilepsy but no sign of it on brain scans.

This kind of epilepsy is no joke: apart from general severe cognitive symptoms (and fatigue), you can e.g. wake up in the morning and find out you've emptied your entire wardrobe without remembering anything; not remember if you've eaten or not, even if you ate ten minutes ago; not being able to find your way home, etc.

It's not hard to understand how having an unpredictable condition like this could trigger anxiety in patients. But then these doctors turn things upside down and say the seizures are triggered by the anxiety. The next logical step, in their minds, is treatment for anxiety as a treatment for the seizures (CBT, mindfulness, etc.). Sounds familiar, doesn't it?

 

I have even seen it claimed online that people can suffer from both epileptic seizures and non epileptic psychogenic seizures at the same time and that the psychogenic seizures look exactly like their epileptic ones.

The problem is its not just doctors saying this its also patients going onto youtube and advocating for PNES (psychogenic non epileptic seizures) to be more understood by the medical profession and that they are functional disorders.

There is no shortage of videos like this.

https://www.youtube.com/watch?v=ZBSXnf1KADA

 

And here's Lorraine Kelly, one of the biggest tv presenters in the UK talking a big bunch of bollocks about FND. No doubt she has had a script put in front of her and thinks she is helping people but really these talking heads in the media need to stop sometimes and ask questions before being used in this way.

I dont think this is a news article although it is presented as one. It seems to be a information piece for some charity type thing but really it just shows the levels of propaganda some groups will go to and how our supposed professional broadcasters have zero journalistic curiosity anymore.

Chuck in some nonsense about helping people and "mental health" and it seems you have a licence to make any amount of unsubstantiated claims and a line around the block of celebrity endorsement.

I would love to know who was behind this video and if Kelly was paid money to narrate this and for whom.

On a slightly separate note the TV news now just seems to be one long advert to convince the whole world that they have some form of mental illness nowadays.

https://www.youtube.com/watch?v=0t0B58WiHqc

 

Can it really be said that those were lower if the reductions are not statistically significant? That sentence should have simply read "Event duration and psychiatric symptom severity were not statistically significant."

Adding to the bias of considering them psychogenic, determined strictly by lack of evidence, and the huge dropout rates it's really dishonest to call something both not statistically significant but also raise the direction within the margin of error. Especially as the dropout rates alone completely obliterate that error margin.

At least they had actual objective measurements in using event duration and severity. But not statistically significant means not statistically significant. It once again shows the gap between objective and subjective measures and that the latter clearly show illusionary benefits.

This is just bizarre, though:

There were 23 dropouts. Doesn't sound like much work to gather those reasons rather than speculate, especially as it's useful information. But I guess we'll have to wait for the full paper to see if they did that.

 

Also try to establish the logic of how a doctor makes the differential diagnosis between an epileptic seizure and a "psychogenic seizure that looks exactly like an epileptic seizure but isnt one".

Good luck with that!

 

Surely they should have included a control group of people with epileptic seizures or is that too logical? Perhaps they could have got both groups to change how they answered questions without objective improvement in the same way CBT is designed to do so in other such "trials".

 

Oh, that one is easy. The example I read was justifying a diagnosis of epilepsy and psychogenic epilepsy (called pseudoepilepsy in the article) If you have a seizure while cooking and burn yourself you have epilepsy but if you have a seizure but manage to move from the cooker and not get a severe burn it is psychological (probably an attempt to get sympathy).

i read this at a time they were talking about blindsight and all the strange ways the brain works

 

and if you do both, at the same time?

e.g. start fitting, fall into the only gap which would avoid hitting edges/corners of furniture but on the way down knock off a load of crockery which smashes and then fit on the smashed crockery - not noticing until some time after coming out of it, seeing the smashed crockery on the floor and then figuring out what must have happened, but not the precise timing (i.e. I didn't know if I had knocked it off, as I went down or during or after the fit, so going looking for cuts/gashes etc (of which there were several).

It was determined that I had fits, but not epilepsy, and the neurologist lost interest and sent me to, I believe, a psychologist.

I have also experienced blindsight, although my eyes and visual cortex are 'fine' at times I go 'blind' and can only sense moving edges/movement, and for some reason, in some situations, eyes (not as normal, but an awareness of them).

I didn't know it had a name, people have always given me 'the look' whenever I mention it.

 

Blindsight is where someone goes blind in one eye after a stroke. If they are shown a picture of a lorry in the blind eye they do not see it but when asked to name a vehicle they will say lorry.

I think what you are experiencing are some of the strange visual problems which come with ME. I was originally diagnosed with migraine without the headache as I had so many of these "weird" symptoms and have been plagued with visual problems all my life.

The seizure like episodes are probably more common in ME than usually acknowledged as well. Dreadful things no matter what the cause. We have a neurological disease so you would expect odd symptoms.

The existence of psychogenic seizures is dubious and the ludicrous ways of diagnosing them have no place in medicine.

Increased adrenaline, even "stress" may bring on seizures but it is the physical process which is important and should be getting the money for research.

 

My hypothesis, after reading the wikipedia entry on blindsight, was that at times something (neurological issue/seizure/whatever) is shutting down my ability to process visual info, leaving me with only 'blindsight' until it recovers. As I've mentioned before when describing this on here there is no sense of panic, only a 'oh no not this again' sensation.

 

We get used to things, don't we I think it is very likely you are right about the brain not being able to process information. Like you, I have formed my own ideas of what is happening with the strange symptoms that are so hard to talk about and no one medical seems to know about.

The idea that there is just not enough ATP being produced to power these things makes sense to me, even if it turns out not to be true.

I get episodes of blindness where everything is like an overexposed photo. It happened to me in hospital and I thought that finally someone could look and find out what was going wrong but no one was interested. I could make out where the nurses were; because of their white uniforms they looked like brighter blobs so I do not know if they believed me. Like you I do not feel any sense of panic and I think they disbelieved me as well because I was just getting on with it, using touch to guide me.