PNES A difficult conversation worth having

[Cint]

and there is always always to much go over 15 minutes wouldn't work with him.

Me too! I definitely need much more than just 15 minutes. I would raise H&!! if that is all the time I was allowed.

 

[masterjen]

And a neuro gets 15 minutes with you to try to sort it all out.

I've never heard of such a short period of time. My initial appointment with my epileptologist was 90 min, and follow-ups are 30-45 min.

 

[Kgartner]

I've never heard of such a short period of time. My initial appointment with my epileptologist was 90 min, and follow-ups are 30-45 min.

That's true for us as well. We generally take 30-45 minutes for follow-ups, but sometimes it's been as long as an hour. He will take as much time with us as we need.

If your neuro isn't doing that with you you should definitely look for a new one. Maybe when my daughter's care gets more "routine" (not sure when that day will come!) 15 minutes would be enough time, but certainly not now!

 

[AlohaBird]

I get at least 30 minutes with my epileptologist. REMEMBER-- Who is paying who?

I think actual epileptologists tend to be somewhat better about this but I wouldn't know personally because none is available to me in my HMO in my location.

I will say with my neuro he does spend as much time with me as he needs to, so it is never just 15 minutes
and there is always always to much go over 15 minutes wouldn't work with him.

And you can also get him on the phone IIRC. That's something else I wish I had.

Me too! I definitely need much more than just 15 minutes. I would raise H&!! if that is all the time I was allowed.

I agree. 15 minutes is barely enough time to get your file open.

I've never heard of such a short period of time. My initial appointment with my epileptologist was 90 min, and follow-ups are 30-45 min.

Consider yourself fortunate.

That's true for us as well. We generally take 30-45 minutes for follow-ups, but sometimes it's been as long as an hour.
If your neuro isn't doing that with you you should definitely look for a new one.

I wish I could. And I wish I were not the only person with this kind of neuro. People who live in urban centers may have a little more opportunity to "vote with their feet" if they are not getting the care they need. I don't.

Also within an HMO structure it has been my experience that you are assigned a doctor, it's not really a choice.

But then I might want to consider myself fortunate when compared with FedUp who has to wait over a year to even get an appointment.

 

[AlohaBird]

I have an appointment with my new neuro coming up this Friday. First time for Kaiser Hawaii. We will see if they can do any better than my SoCal Kaiser experiences.

 

[skipp8]

I usually hate Youtube but this is an exellent video by Stanford Healthcare ...



It is 1 hour lonng but covers all aspects on PNES. I hope I get a doctor like that...

 

[skipp8]

:hugs: Oh, that's so sweet Bernard for allowing to post the link to the awesome video!

 

[AlohaBird]

That video is a great find. Thank you so much for digging that up, skipp8.

I really urge everyone to make some time to watch the whole thing. Well worth it.

This is an example of the kind of interdisciplinary coordination that should be happening but is often sorely lacking.

 

[Zoe]

Psychogenic Non-Epileptic Seizures (PNES)

Perhaps it is time to have the discussion without all of that. People who have psychogenic seizures have seizures that are every bit as "real" as any others, they are just of a different origin and therefore need a different form of treatment.

Opinions, experiences, more info? Bring it on.

Agreed, big time! EEGs have never been a definitive test for seizures and become a tool for brow beating people who are being diagnosed with psychogenic when any number of things may trigger those symptoms. It is not unusual for someone to have an abnormal EEG and never experience a seizure, while many with normal EEGs do have seizures.

Regardless, the seizures of folks diagnosed with psychogenic seizues are no less real than what anyone diagnosed with seizures experiences.

Many things can trigger the symptoms. First, I'd suggest looking into GI issues, second, metabolic problems, just for starters. Also, undiagnosed cardiac disorders may produce seizure like symptoms. The "psychogenic" diagnosis should be banned because those who have the seizures may die for failure to be properly diagnosed and treated.

I had doctors who thought my partials, were panic attacks, bipolar and all kinds of BS, even after they were diagnosed as partials. Any time any one is told their seizure type symptoms are psychogenic, it's a good time to consider looking elsewhere for diagnosis and treatment--*ESPECIALLY* because so many psychiatric drugs can have side effects that may make the seizures worse.

nnp.bmj.com/.../ii9....
Journal of Neurology, Neurosurgery, and Psychiatry
by PEM Smith - ?2001 - ?Cited by 34 - ?Related articles
Prodromal symptoms (presyncope) developing over 1–5 minutes include light .... Thirdly, panic exacerbates epilepsy through hyperventilation, sleep .... (2000) Misdiagnosis of epilepsy: many seizure-like attacks have a cardiovascular cause

http://jnnp.bmj.com/content/70/suppl_2/ii9.full

Partial seizures presenting as panic attacks
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by SA Thompson - ?2000 - ?Cited by 50 - ?Related articles
Oct 21, 2000 - Temporal lobe seizures commonly include affective symptoms, fear, and ... These began with a pain in her head, hyperventilation, and

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1118775/ **electrolyte imbalance and many other problems can trigger panic attacks as well. ***


There are a number of conditions which can trigger hyperventilation which in turn can trigger seizures or seizure like symptoms. At least some researchers are picking up on this.

AbstractSend to:
Can J Neurol Sci. 2011 May;38(3):487-93.
Misdiagnosis of epileptic seizures as manifestations of psychiatric illnesses.
Mirsattari SM1, Gofton TE, Chong DJ.
Author information
Abstract
BACKGROUND:
Epileptic seizures may be misdiagnosed if they manifest as psychiatric symptoms or seizures occur in patients with known psychiatric illness.
METHODS:
We present clinical profiles of six patients with epilepsy (three male, mean age 39 ± 12 years) that presented with prominent psychiatric symptoms.
RESULTS:
Two patients had pre-existing psychiatric illnesses. Three patients were initially diagnosed with panic attacks, two with psychosis, and one with schizophrenia. Five patients had temporal lobe epilepsy (TLE) while the sixth patient was subsequently found to have absence status epilepticus (SE). Cranial computed tomogram (CT) including contrast study was unremarkable in five patients and showed post-traumatic changes in one patient. Cranial magnetic resonance imaging (MRI) revealed dysembryoplastic neuroepithelial tumour (DNET) in one patient, cavernous hemangioma in one, and post-traumatic changes plus bilateral mesial temporal sclerosis in another patient but it was normal in two TLE patients. Routine electroencephalography (EEG) revealed absence SE in one patient but it was non-diagnostic in the TLE patients. Video-EEG telemetry in the epilepsy monitoring unit (EMU) was necessary to establish the diagnosis in four TLE patients. None of the patients responded to medications aimed at treating psychiatric symptoms alone. Two patients required surgery while the other four required treatment with anti-epileptic drugs. All the patients had favorable response to the treatment of their epilepsy.
CONCLUSIONS:
This case series illustrates that epileptic patients may experience non-convulsive seizures that might be mistaken as primary psychiatric illnesses. In this subset of patients, evaluation by an epileptologist, MRI of the brain, and/or video-EEG telemetry in an EMU was necessary to confirm the diagnosis of epilepsy if routine EEGs and cranial CT are normal.
Comment in
Pseudo-pseudo epileptic seizures: the challenging borderland. [Can J Neurol Sci. 2011]
http://www.ncbi.nlm.nih.gov/pubmed/21515510

 

[AlohaBird]

One thing I found very interesting in that video is where one of the doctors said that seizures can indeed be epileptic initially (due to any number of physiological factors, things like my example of running on caffeine and chocolate and no sleep during my schools years.) But then as the doctor put it "the brain can get in the habit of seizing" and the seizures can become psychogenic. And the very stress of having this disorder and always being afraid of having a seizure can become the psychological stressor that perpetuates the disorder.

So, having seizures can give you seizures basically.

 

[Ruth]

:hugs: Oh, that's so sweet Bernard for allowing to post the link to the awesome video!

I thank you Bernard for allowing the video. I enjoyed it very much. It was from Stanford, CA.

I hope everyone watched it. They showed the difference in EEG's between the PNES and epilepsy seizures.

Another term for PNES is NEAD (non-epileptic Attack Disorder.)

 

[AlohaBird]

Agreed, big time! EEGs have never been a definitive test for seizures and become a tool for brow beating people who are being diagnosed with psychogenic when any number of things may trigger those symptoms. It is not unusual for someone to have an abnormal EEG and never experience a seizure, while many with normal EEGs do have seizures.

Video-EEG telemetry in the epilepsy monitoring unit (EMU) was necessary to establish the diagnosis in four TLE patients.

My EEGs have always been "normal". I am finally going to get a VEEG test soon.
I saw a neuro today who agreed to do one as a "two-fer" test for sleep apnea and PNES.

 

[Ruth]

I have normal EEG's too. You have to have a seizure during the EEG for it to show up.

I should have a sleep apnea test.

 

[Zoe]

I hope you won't be intimidated if the video EEG monitoring comes back as not seizures, those spells are just as real as anyone else's. Are you familiar with what is called the "kindling" theory of epilepsy which holds that seizures develop over time, are in some ways conditioned? And behaviorist approaches attempt to decondition seizures-in effect unlearn them. It's one of the main approaches the clinical psychologist worked with me on to train my nervous system to abort and eventually stop having them. But there were some drawbacks to the strictly behavior modification approach too--why it is so important to look at many angles and switch your approach to managing them whenever you see the need, even if it seems illogical.


Oh Geeze!!! I just did a Google search on Kindling, to leave a link for you. What comes up? A discussion at CWE and a post I made in 2009.
http://www.coping-with-epilepsy.com/forums/f39/epi-improved-w-gfdiet-md-report-5532/index2.html

Maybe there's something in those posts, (some good ones from Robin N and others, too) that will give you clues for overcoming yours as well.op:

 

[Ruth]

Are you familiar with what is called the "kindling" theory of epilepsy which holds that seizures develop over time, are in some ways conditioned? And behaviorist approaches attempt to decondition seizures-in effect unlearn them. It's one of the main approaches the clinical psychologist worked with me on to train my nervous system to abort and eventually stop

Sorry, Zoe, I accidentally deleted part of the last sentence.

There are some things that sounded like you were getting Neurofeedback. That is the one I quoted.

Am I right or wrong Zoe?

 

[Zoe]

HI Ruth,
I had some neurofeedback training too, but it was right about the time my seizures had stopped. That's another approach that has a good track record for seizures too.

 

[Zoe]

One thing I found very interesting in that video is where one of the doctors said that seizures can indeed be epileptic initially (due to any number of physiological factors, things like my example of running on caffeine and chocolate and no sleep during my schools years.) But then as the doctor put it "the brain can get in the habit of seizing" and the seizures can become psychogenic. And the very stress of having this disorder and always being afraid of having a seizure can become the psychological stressor that perpetuates the disorder.

So, having seizures can give you seizures basically.

Don't drive yourself nuts by focusing on the psychological stressors; once seizures have developed many things can trigger the overly sensitive nervous system. It is easy to confuse cause with effect.


What your doctor said about the seizures becoming a "habit" is what kindling theory is about, like Pavlov's dog being conditioned to salivate at the sound of a tuning fork. Something, some things irritated your nervous system and over time it will become hypersensitive so less and less irritation will trigger a seizure.


Adv Neurol. 1986;44:303-18.
Kindling model of epilepsy.
McNamara JO.
Abstract
Kindling is an animal model of epilepsy produced by focal electrical stimulation of the brain. This chapter: describes the kindling phenomenon; considers the validity of kindling as an animal model and proposes a hypothesis as to how kindling might contribute to human epileptogenesis; presents a critical review of current insights into the underlying mechanisms; and emphasizes that, if progress is to be made in understanding the mechanisms, the network of brain structures underlying kindling must be elucidated. Recent investigations directly related to the network issue are considered, namely studies demonstrating that a brainstem structure, the substantia nigra (SN), can regulate the kindled seizure threshold. Thus, either microinjection of a GABA receptor agonist or a GABA transaminase inhibitor into SN, but not into nearby sites, elevates kindled-seizure threshold. Likewise, destruction of SN, but not of adjacent structures, is associated with an increase of kindled-seizure threshold. These treatments suppress not only clonic motor seizures, but also complex partial seizures and afterdischarge at the site of stimulation. These findings demonstrate that the SN can regulate the intrinsic neuronal excitability of forebrain structures. A hypothesis is advanced that generation of a complex partial seizure requires activation of neurons in the SN which in turn feed back through polysynaptic connections to influence neurons at the site of seizure origin. This nigral influence on neurons at the site of seizure origin is either a direct excitation or a disinhibition. Thus, the seizure represents reverberatory activity within a network of brain structures which includes the SN. Other investigators have proposed that the centrencephalic system subserved seizure propagation; the relationship of the hypothesis proposed here to these earlier ideas is discussed.

http://www.ncbi.nlm.nih.gov/pubmed/2871721

 

[AlohaBird]

I have normal EEG's too. You have to have a seizure during the EEG for it to show up..

And if you only have sleep seizures but they do the EEG during office hours, it's unlikely they will see anything.

I hope you won't be intimidated if the video EEG monitoring comes back as not seizures, those spells are just as real as anyone else's. Are you familiar with what is called the "kindling" theory of epilepsy which holds that seizures develop over time, are in some ways conditioned?

Yes that is exactly what the Stanford Doc was talking about. Honestly I have no idea one way or the other which mine are, I would just like to know. It wouldn't bother me to find out either way. At least I would have the full info.

HI Ruth,
I had some neurofeedback training too, but it was right about the time my seizures had stopped. That's another approach that has a good track record for seizures too.

This is something else I am going to be trying soon.

Don't drive yourself nuts by focusing on the psychological stressors; once seizures have developed many things can trigger the overly sensitive nervous system. It is easy to confuse cause with effect.

What your doctor said about the seizures becoming a "habit" is what kindling theory is about, like Pavlov's dog being conditioned to salivate at the sound of a tuning fork. Something, some things irritated your nervous system and over time it will become hypersensitive so less and less irritation will trigger a seizure.

It doesn't upset me, I just find it ironic.
30+ years of a learned behavior is a lot to unlearn however.

 

[Zoe]

Yes that is exactly what the Stanford Doc was talking about. Honestly I have no idea one way or the other which mine are, I would just like to know. It wouldn't bother me to find out either way. At least I would have the full info.

One semester in college I tutored medical terminology. One of my students had a morbid fear of big words and could not do better than a "C" on any of our tests. She described herself as a "C" level in all the things she did.

After explaining to her that most medical terms were really just a lot of little Greek and Latin words put together, she was not so afraid of those big words with so many syllables. Practice making large words from small Greek and Latin words improved her confidence. Eventually, she was able to see the medical terms as many little words, not just a gigantic one and to break the terms down into their parts and see their meaning. Her grades then improved.

Whether or not you "really" have seizures, or, are having "real" seizures, is a matter of opinion, not an either\or issue. Two different specialists may determine you are having seizures; another 2 or 3 or more speciaists reviewing the same information may come to the opposite conclusion. This is true for many conditions, not just epilepsy.

We like and need the comfort of knowing what we "really" have because when a condition has a name, it isn't so frightening as we then have a concrete something to work on overcoming.

Suppose the video comes back with the diagnosis of seizures. Learning and overcoming all the many things that might trigger your seizures can leave you seizure free.

Suppose the video comes back with the conclusion that you don't have epilepsy. Regardless, learning and overcoming the triggers for your so-called psychogenic seizures can leave you seizure free as well.

If someone overcomes his seizures using behavior modification techniques, like neurofeedback, breathing exercises, and relaxtion training. Has that person overcome seizures or "seizure behavior"?

All seizures have triggers; things that will set them off. They are not just random acts of neurological violence. Addressing each of these triggers may be your key to overcoming them.

 

[AlohaBird]

And then there are people, as that video points out, that have both types of seizures.

So, no I might not get perfectly definitive answers but I can at least try to shed some more light on the murky subject.