Questionable article from another website

[masterjen]

http://my.epilepsy.com/newsletter/o...ail&utm_term=0_cf0feb6500-6de39bb67c-12030341

So what is everyone's opinion of this?
I think all of the sudden everyone in the early stages of seizure diagnosis or not yet diagnosed are suddenly going to question whether their seizures are "real" or not, and maybe not go through with getting a proper diagnosis. No one wants epilepsy, but at the same time I think no wants to be told they have a psychological problem. For these reasons, I want to bring the article to the forefront so it can be discussed, and anyone with questions can throw them out to the knowledgeable members of this forum.
For me:
-if the seizure wakes me: often my eyes will CLOSE because they become extremely painful and sensitive even when it is dark. Strike one.
-my seizures are largely left-sided so movements are asymmetrical or asynchronous (my left arm curls to my head, my head turns and stays turned to the left and my left leg does a sustained kick to the left, while my right arm does a sustained extension out to the right Strike two.
-I can recall some of the event most of the time. Strike three.
-I am exhausted after the event and the next day, but I wouldn't call myself confused exactly. Unless I'm taking too strong an interpretation to the meaning of confused. Strike 4.
(I haven't had a vEEG yet, but standard one hour EEGs normal).
Hey, strike 4; I was probably already "out" at strike 2 or 3.

Based on history, MRI and event descriptions the epileptologist feels frontal lobe epilepsy. While I realize the article is probably a summary, it doesn't even mention the importance of MRI, event descriptions, and history. I was on a rant to my sympathetic best friend about my employer being upset today about my taking too many days off due to seizures, and then when I got home today I got chewed out by my sister-in-law about something else not my fault so I guess I'm on a roll or something Anyway, I would like to hear what others feel about this article.

 

[QueenieKP]

I hadn't heard of non epileptic seizures until my epilepsy recurred a decade after being seizure free.

I went round and round thinking I must have non epileptic seizures, as surely I 'didn't have epilepsy anymore to thinking I might have another neurological condition to thinking it probably is epilepsy.

But it is hard newly diagnosed or waiting for a re diagnosis.

Also from the reading I have done, it's suggested that some people with non epileptic seizures also have epileptic seizures (estimates between 5 and 20 %).

Q

 

[Nakamova]

I think no one wants to be misdiagnosed, regardless of whether it's with a psychological disorder or a seizure disorder.

I come down on the side of PNES being over-diagnosed, particularly by neurologists who [mistakenly] rely on a positive EEG to diagnose epilepsy. I do think it can be a very difficult area of diagnosis for a neuro with very little experience with epilepsy (not that that's a good excuse). What can be most damaging is to be labeled with a diagnosis of Psychogenic Seizures right off the bat by an incompetent or inexperienced doctor. From there on out, the patient has to deal with the skepticism of every subsequent doc they see.

In addition, a psychogenic seizure diagnosis can make it extra-hard for someone to get help and acceptance from their friends and family members, regardless of whether the diagnosis is accurate or not.

To be fair, the article doesn't say that the requirements they list for a diagnosis of psychogenic non-epileptic seizures are absolutes. It says that certain signs might suggest non-epileptic seizures or favor an epilepsy diagnosis. This study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2610232/ suggests that the most useful sign may be the breathing pattern that is characteristic of a the post-seizure phase of a tonic-clonic; that seems less ambiguous and more helpful than some of the other things on the list. Overall it's still a controversial area (see http://professionals.epilepsy.com/page/e_b_psychogenic_pseudoseizures.html), so the hope is that the docs are fully aware of the importance of being both conservative and open-minded before making the call.

 

[Bernard]

Difficult diagnosis is difficult:

http://www.coping-with-epilepsy.com...ex-partial-nead-nes-pnes-including-ptsd-1680/

 

[Kgartner]

I read that article, and while the seizures my daughter had six weeks ago do not fit the pattern of psychogenic seizures at all, I was very curious about what "stertorous breathing" is, particularly since it is considered the most useful marker of a true t-c seizure. I looked it up, but it didn't help me much.

I am wracking my brain, but I honestly have no recollection of what my daughter's breathing sounded like once her seizure had ended. I don't remember it being particularly loud - once she stopped convulsing she closed her eyes and was completely unconscious and unrouseable for several minutes. I remember confirming that she was actually breathing and feeling very relieved! Of course, since this was her first witnessed seizure I was extremely distressed and distracted at the time, and missed a lot of important details.

Can anyone enlighten me?

 

[Nakamova]

It's harsh, noisy breathing -- it can sound like heavy snoring or gasping.

 

[Cint]

Kgartner,

Did your daughter sound like she was gasping for air during the seizure? This is what they mean by "stertorous "breathing.

I agree with Nakamova in that PNES is over diagnosed by docs who are not well educated in the field of epilepsy. It does take much patience and training in order to make the right diagnosis. For some patients, it may be years before they receive the correct diagnosis and treatment, unfortunately.

 

[Kgartner]

Thanks for the clarification.

My recollection is that during the seizure I actually couldn't tell if she was breathing or not. Her mouth was clamped shut, her coloring was purpulish, and she was drooling, and I could not discern whether her chest was rising and falling. I remember this because my younger daughter was on the phone with the 911 operator, and they told me to "make sure she's breathing" and I couldn't tell. She may have taken a loud breath at the end of the convulsions before lapsing into complete unconsciousness - that's what I don't remember. At that point I did get clear that she was breathing, but my memory is incomplete about how I knew that.

She has responded well to her medication and has not had further seizures so hopefully I won't get another chance to observe a tonic-clonic seizure and know what to look for. But again thanks for the explanation!

 

[Nakamova]

Often there's what sounds like a scream near the beginning of the seizure. It's actually a sharp intake of breath that occurs as the body sends the blood away from the extremities and up to help the brain while it's seizing. That's why people can look purplish or pale during a seizure. The heavy breathing part tends to show up after the convulsions are over, while the person is still out of it or is "sleeping it off." I definitely hope you don't have to go through it again...

 

[SoonToBeMommy]

Is there always a scream type noise? No one has said anything about a scream just that I moan and whine loudly. I was also told I lose conciousness and breathe very quickly and heavily afterwards.

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[AlexC]

Articles like that make my blood boil. When trying to get a diagnoses nearly a decade ago, the ER docs and Neurologists all told me it was "in my head". Well, no ****! Joking aside, it made me question the medical community, as well as myself. I suffered deep depression and anxiety because of it. Articles like this are hurtful and do nothing to support us.

 

[Nakamova]

Is there always a scream type noise? No one has said anything about a scream.

No, there isn't always a scream with a tonic-clonic. It can also be too quiet (just a "whoosh") or too quick for anyone to hear. Usually observers just remember what comes next -- the loss of consciousness and the convulsing.

 

[SoonToBeMommy]

Ah okay I make groaning and gasping noises during though

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[qtowngirl]

interesting thread.

Queenie- "as surely I didn't have epilepsy anymore"... unfortunately this is not a reality with epilepsy, as it is incurable, even after one has brain surgery. one can go without seizures for several years but the risk is always there for a seizure to take place, which is why it's distinguished as incurable. very hard thing to accept. my surgeon recently told me he had a new male patient who went 25 years seizure-free, just started having them again. unimagineable, but unfortunately is a reality.

Nak- "This study suggests that the most useful sign may be the breathing pattern that is characteristic of a the post-seizure phase of a tonic-clonic. It's harsh, noisy breathing -- it can sound like heavy snoring or gasping."
right on the money nak, as always i've heard from many, and it also applies to myself, that when the t.c. stops my breathing is very harsh, i have actually heard it myself and my best comparison is sounding like a pug, a loud and garbled breathing pug.

kgartner- "I don't remember it being particularly loud - once she stopped convulsing she closed her eyes and was completely unconscious and unrouseable for several minutes."
don't be too hard on yourself that a few things were missed, VERY common for those who are witnessing and scared. the unnatural breathing that sounds forced and grated is definately exclusive to a tonic clonic; if it happens again (fingers crossed not) just take the level of sound in as much as you can, but don't give yourself too hard of a time, that is alot for someone to deal with. unconscious and unrouseable for several minutes as well as drooling are classic signs as well.

nak- "Often there's what sounds like a scream near the beginning of the seizure."
this is medically referred to as 'howling.' not EVERYONE does it though, it's merely common. myself, every time i've had a witness they said a loud howl-like sound came out right before i turned white and eyes rolled back, which is interesting b/c they didn't know that was the term used, but said it themselves.
"It's why people can look purplish or pale during a seizure." so true; i've looked in the mirror after every t.c. and was more than ghost-white. ughhhh.