Pseudoseizures/Non Epileptic Attack Disorder

[Elaine H]

Hi There Guys

I just wanted to ask if anyone out there has ever been diagnosed with the above? I've been reading up on this subject, for the book, and because I have two friends, one with with epilepsy, who has been told he also has Pseudos and one who has been having regular Tonic Clonic seizures, incontinence, biting her tongue etc, and her family doctor (she has not yet seen a Neurologist) refuses to prescribe any anti convulsants,or refer her to a specialist, who will know what he is talking about, as this Dr is obviously just guessing, the poor woman has been taken the casualty several times a day for the last few weeks!!! Her EEG is normal, so they tell her she has Pseudo's, or are basically accusing her of showing all the signs of a Tonic Clonic Seizure, but not actually having Epilepsy. Pseudos are more common in females, but why the Hell would anyone want to pretend to have epilepsy????!!!!!!!! Anyone out there have any ideas? My other friend who was accused of it, had brain surgery for the epilepsy, you're hardly going to pretend to have seizures if it involved brain surgery are you?? Anyone else been in a similar predicament, I'd love to hear, the brain fascinates me so much!!
Hope everyone is well, and by the way, I have a job, after four years of looking, I have finally found a sympathetic understanding employer, I started last week, when I told them at the interview about my epilepsy, they were like.... "Ok right, no problem" and that was it! So far so good, and it is just so good to be back at work, I'm working in Conference and Events for Holiday Inn hotels.
Lotsalove

Lainey
XXXX

 

[nicholas:)]

Hi Elaine, the first neurologist I saw in 2010 arranged for me to have 1hr and 24hr eegs, an MRI scan and a 24hr video telemetry after persistent calls from myself. He was already of the opinion that my seizures were Pseudo seizures. When the eegs and the scan came back normal he was happy to discharge me. I think he was influenced by the fact that I have mental health issues. He was quite arrogant and dismissive of me even when presented with the diaries of my seizures.

I should mention here that Pseudo seizures are no longer seen as some one pretending to have seizures but rather seizures caused by stress or mental health problems but not necessary by recordable abnormal brain activity. I asked for a second opinion so my GP referred me to a second Neurologist. The second neurologist was persuaded by my presentation and my seizure diaries that I probably had epilepsy and in 2011 started me on Tegretol. After a month my seizures dropped from 78-109 a month to 15-25 a month. In September of last year she added Clonazepam to the Tegretol and my seizures dropped from 15-25 a month to 5 down to 1.

The neurologist cannot for definite diagnose me as having epilepsy because clinical tests offer no proof. I can, however be said to have probable epilepsy because my diaries indicate this to be so. My seizures are nocturnal so I have no witnesses but I remain conscious throughout my seizures so I can provide the GP and Neurologist with accounts of what form my seizures take.

Good luck with your work.
Nick

 

[LJ-Bain]

I was diagnosed with conversion disorder and hence pseudoseizures for four years before my seizures became worse and more recognizable.
Four different neurologists saw normal CT, normal MRI, normal EEG and then they believe that you simply can't have epilepsy without proof. Being a woman also leans you towards pseudoseizures because they believe that women stress out easily and become "hysterical". There are drs out there who actually listen and Video EEGs can help too to prove otherwise.
Sometimes a dr. will give you the benefit of the doubt and finally try an anti-convulsant when nothing else helps and when they do...ta da! Diagnosis. It can be a long hard fight.
Pseudoseizures you generally don't bite your tongue on the side or wet yourself and it's really difficult to imitate certain aspects of your face, like your eyes when you have a t/c. Apparently pseudoseizures are done with an audience and noisily ramp up with alot of drama. Sometimes crying. They also look to see if your eyes are open or closed during the seizures. Dilated pupils? Breathing patterns post ictal are a key too. Is the person panting? Shallowly breathing with long inhale/exhale patterns....also how long they last and if there is any warning is helpful to differentiate.
Nobody wants to pretend to have seizures. With pseudoseizures I believe the body is expressing the distress that the inner body is having difficulties with.
So yes, both real. Both valid. One simply has much more stigma attached.

I'm glad that you have been so accepted in your life! Way to go with the new job! Very exciting! I hope your friend has success! Fighting that diagnosis means seeing many new neurologists but in the end it is worth it. Validation and finally help to reduce the suckers.

 

[jayde-101]

It is indeed getting worse Elaine and yes i have been up casulty again but they discharge me i have had two TCs today lasting quite a while and yes I've gotten a badly bit tongue and wet myself on both Im at my wits end ....
Im to interested in this subject ... when in feeling better i would love to come over and discuss it all with you ... but only when Im bit better

lots of love jade xxx

 

[MaryK]

Speaking of work, I watch the show Undercover Boss and in the past two weeks, one show in UK at a famous lunch place with a funny name (cannot think of it) and the other at US famous candle company, both had employees with epilepsy and both the CEOs were very supportive and just incredible to these two employees with epilepsy. YES!

Congrats on your job Elaine. So sorry you have not found an answer Jade. This is incredibly confusing to me that you cannot be admitted to the hospital for an accurate diagnosis and of course the appropriate seizure meds. My best to you.

MaryK

 

[jayde-101]

well im off up to the drs again today :/ .. im trying to go with an open mind but i am struggling... i think this is becuase im fed up of them not doing anything and just going "its psychogenic"

yes i did really want to fling my arms and legs about and wet myself in the Asda supermarket for 20 mins ...

oh well we will see i dont really understand it to be honest ... the gp keeps signing me "un-fit" to work and have been signed off work but yet they are not doing anything ?!?1 ...if they gonna sign someone un-fit to work and sign them off so they cant go to work even when they want to surely they should be doing somthing to help me and if they believe that its is truely psychogenic why are they still signing me off work
:soap::soap::soap:

arrggh oh well i shall see ... i dont like this NHS much there are some things that it seems to fail on .... like recognising when someone + someones body cant cope with much more torture from seizures ...

sorry for the rant
love jade x

 

[JanRich]

I am a clinical psychologst working in Sussex (NHS) we run a Non-Epileptic Attack disorder service. IF your friends want some assistance they can be referrred through neurology or their GP. Addressed to the Neuropsychiatric Clinic, Hurstwood Park, Princess Royal Hospital, Haywards Heath.
Dr Jan Rich

 

[horsehead]

I was once dxed with epilepsy as a child . I've been having seizures my mom thinks since I was 9 years old. My parents took me out of school my freshman year and my seizures stopped so they believed I wasn't having seizures but was just stressed. I went back to school the next year and still had no seizures . I didn't have seizures again till I was in my 20's at that point they did lots of tests and couldn't find anything wrong. i was givin anxiety meds and they made things worse so i stopped all meds. 9 years ago i started having seizures again this time i didn't bother going to the doctor. A few years ago my seizures increased to daily so I went again to the doctor they put me on keppra. The seizures dropped dramatically going from sevaral a day down to just a couple a month. then they added klonipin and they stopped completly. they decided to do a three day video eeg at that point and when that came out clear , even though I had 4 seizures during the video eeg, they took me off all meds and did nothing more for me. the seizures started again a day and a half after taking me off the meds for the eeg. They said the meds only worked because my mind was saying they would. The doctor even wrote a note to my primary dotor telling her to never put me on any seizure meds.

 

[Rae1889]

I was first diagnosed with Frontal Lobe epilepsy after waiting a long time for any diagnosis, Then that neuro sent me off to another neuro after I landed in the ICU. That neuro told me that I was crazy and having pseudo seizures. I saw a psychiatrist after that (not wanting to see him, but figured if it proved that neuro wrong I would be happier). The Psychiatrist told me I did not need him and he did not think the seizures where psychogenic in nature. So now here I am, stuck with no doctor, no neuro, no help and nobody that wants to listen. Yet my seizures get worse.

 

[Sandylu]

Oh, Horsehead, I feel for you. I had a similar experience. During a weeklong hospital stay, had one "episode", only to be told it was psychogenic, then sent home with no meds and told to see a therapist. I had even had two abnormal EGGS in the past. Even at the hospital, though, I was told people could have both kinds of seizures. My neuro told me that the body can "learn" seizures and once you start having epileptic seizures, when under stress it will go into the fight and flight mode and can "remember" that response as a coping mechanism, even though not epileptic.
After a recent upper GI test, when coming out of the anesthesia, I had five seizures in a row and am now back on seizure meds. The seizures have all but disappeared, now.

 

[Cint]

Hi Elaine,

Glad to hear you've found work after you're surgery and road to recovery. I hope your seizures remain controlled.

Although I was never diagnosed as having pseudoseizures, I do find it quite interesting. IMO, all aspects of life from wellness to illness start with the brain/body/mind connection. Years ago when I first started having simple partial seizures, the dr. said I was hypoglycemic. Then the seizures progressed to TC's and that is when I ended up in the hospital with serious burns from seizures.

One can't always go on the opinion of the first or second dr. Sometimes it takes many doctors before you find the right care. And the best are those who specifically work in this field of epilepsy: epileptologists and neuropsychiatrists, neuropsychologists.

Here's an interesting article about pseudoseizures:
http://www.aesnet.org/files/dmFile/epc_277.pdf

 

[qtowngirl]

I was first diagnosed with Frontal Lobe epilepsy after waiting a long time for any diagnosis, Then that neuro sent me off to another neuro after I landed in the ICU. That neuro told me that I was crazy and having pseudo seizures. I saw a psychiatrist after that (not wanting to see him, but figured if it proved that neuro wrong I would be happier). The Psychiatrist told me I did not need him and he did not think the seizures where psychogenic in nature. So now here I am, stuck with no doctor, no neuro, no help and nobody that wants to listen. Yet my seizures get worse.

Rae...???
So you've been diagnosed (proves you have it), and the psych backed that up as well. What's the reason for not having the original neuro anymore that first diagnosed you? And more so with no doc/neuro how do you get prescribed meds? Are you going med free without regular prescriptions and bloodwork? If so that is shocking, not the norm here in Canada at all.
Sorry to hear it if that's the case.

 

[Nakamova]

Many neurologists seem to make the default assumption that a negative EEG means that any seizures/symptoms are non-epileptic in origin. Ideally, all neurologists would have the training and experience to know that:

1. The EEG is an imperfect tool. It can miss seizures that are transient or that originate in areas not covered by the sensors. Certain kinds of epilepsy (such as frontal lobe epilepsy) can be especially hard to record.
2. Clinical evidence (i.e. actual symptoms) can in many cases be sufficient to make a provisional diagnosis of epilepsy.
3. If symptoms respond positively to treatment with anti-seizure medications, that can provide confirmation of an epilepsy diagnosis (not to mention relief for the patient).

So... how do we get neurologists to evolve?

 

[Cint]

Many neurologists seem to make the default assumption that a negative EEG means that any seizures/symptoms are non-epileptic in origin. Ideally, all neurologists would have the training and experience to know that:

1. The EEG is an imperfect tool. It can miss seizures that are transient or that originate in areas not covered by the sensors. Certain kinds of epilepsy (such as frontal lobe epilepsy) can be especially hard to record.
2. Clinical evidence (i.e. actual symptoms) can in many cases be sufficient to make a provisional diagnosis of epilepsy.
3. If symptoms respond positively to treatment with anti-seizure medications, that can provide confirmation of an epilepsy diagnosis (not to mention relief for the patient).

So... how do we get neurologists to evolve?

onder: Send them all back to school?! Let us teach them.

 

[qtowngirl]

onder: Send them all back to school?! Let us teach them.

EXACTLY!!!
I don't know how many times I've heard, and dealt with it twice myself, that in even a 1-hour appt. the patient told the neuro way more about E than they told them. We research endlessly, have all types of facts, and half the time they sit there waiting to write a script and get you out of the office, or, are rambling on just to hear their own voice and it's all bullshit.

 

[Nakamova]

Seriously, it would be great if there were a "patient advocate" who could do a presentation at all the major epilepsy conferences. Of course that assumes the neurologists would be willing to listen...

 

[Rae1889]

Rae...???
So you've been diagnosed (proves you have it), and the psych backed that up as well. What's the reason for not having the original neuro anymore that first diagnosed you? And more so with no doc/neuro how do you get prescribed meds? Are you going med free without regular prescriptions and bloodwork? If so that is shocking, not the norm here in Canada at all.
Sorry to hear it if that's the case.

I was diagnosed Just before I landed in the ICU with Status. In there they did more EEGs and came up with Frontal lobe again, as well as issues with both the right and left temporal lobes (more so the right one). The neurologist was a jerk and was frustrated that the 3 meds he was willing to prescribed did not work well for me (I tried them all monotherapy, Lamictal gave me a rash and didnt really help with seizure control. Dilantin gave me a rash that looked like bruises but worked well for seizure control and hurt my teeth quickly. And Gabapentin made my seizures horribly out of control and probably one of the reasons I landed in ICU in the first place) So he passed me off to another neurologist.

That new neurologist was a jerk and used every miniscule thing against me. financial troubles? must be psychogenic seizures (not understanding that financial issues happened because I was missing so much work from seizures and appointments.) planning a wedding? thats too stressful, must be psychogenic seizures. (not caring when I told him my wedding was not going to be stressful as I didnt care what happened that day as long as Chad showed up). then I had a complex partial seizure during the video EEG and pulled off most of the leads during it. Nobody came around to check to make sure they were all still attached properly and when I had a Tonic clonic, it did catch anything but my head movements and jaw motions because that was all that was left attached.

i am currently on no medication, trying to control them the best i can with proper sleep and eating etc. But I go the phases where I pretty much say F--K it and do whatever I want. I figure if nobody wants to help me and the medical community wants to just watch me slowly die then I may as well do what I want.

 

[horsehead]

I know how you feel rea

 

[Sandylu]

That is a good question. How do we get the neurologists to evolve?

 

[rebecch]

Hi Jan,
I nearly contacted you via LinkedIn but thought I'd stay here. I am the mother of a 21 year old young lady. She has been I'll for about 10 years at first diagnosed with severe migraines. Cut a long story short in the summer she attended a clinic in Buckinghamshire where they diagnosed Non epileptic attack disorder NEAD. It would appear that the treatment for this is CBT. There is a two year waiting list on the NHS so we have gone privately, after doing lots of research etc to find a suitable therapist, we travel 60 miles to see her. My daughter and us understand that this is not a quick fix and no guarantees. But she is struggling so much at the moment. She is normally a very up beat girl but it all becomes too much sometimes. She can't work ATM but has a job waiting for her. Please can you give us any advice what so ever. She is also depressed quite understandably. Please help. Thanks.