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Psychogenic Seizures - A place to find explanations and treatment options.

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A place to learn about treatment for psychogenic nonepileptic seizures.

Education, compassion and coordination of efforts will help heal this often misunderstood disorder. It has only recently been studied and only begun to be looked at seriously as something to be treated as a separate and serious condition.
The quality of life for patients that have psychogenic nonepileptic seizures (PNES)can be very low. They do not go outdoors as they are afraid of having these episodes, may not participate in group functions or travel.
Psychotherapy is frequently recommended and therapists are frequently unprepared to deal with this disorder. It is now coming to light that somatics, EMDR, trauma healing methods, biofeedback, hypnosis, self hypnosis and more are showing to be helpful for some with varying success.
Welcome to this lense, I've had PNES for twenty two years, have found good treatment this year, 2007, and hope to make your journey shorter than mine!

Much information is offered at www.webspawner.com/users/charmagick/index.html
Hope to see you there too!

Charlene's Story

~My deepest soul healings I owe to my Spiritual Teacher and Path -and goes beyond the scope of the website.~

I started having seizures when I was twenty seven. The first one was in my sleep awakening my husband. Terrified, he called an ambulance and I was subsequently diagnosed with epilepsy. Finally controlled on antiepileptic medication (AED's), I had a brief time of no seizures. Then I continued to have seizures. I went on to have a video EEG that showed no abnormalities, regular EEG's were normal except for the very first one that showed only a few 'spikes'. Hysterical epilepsy (now known as psychogenic seizures) was diagnosed. That was back in 1985. Little was known about this disorder and I was referred to psychiatry.

The first psychiatrist was kind but clueless about psychosomatics. Three months into treatment I attempted suicide with insulin (I was a nurse in a hospital and had access). After that, I went into a large city hospital for six months on a locked unit psychiatric ward. I didn't know why I did the attempt. It took most of my stay to start having nightmares about the early traumas I had repressed for nearly twenty years.

This started an eight year journey of therapies, hospitalizations, and suicide attempts(14). All in an effort to address the memories of trauma, epileptic seizures/psychogenic seizures, and the hopelessness, depression, loss of identity, career and husband.

After that eight years, I was able to recover as I was scared straight. The caregivers gave up on me saying I would have to go to a state institution and get electroshock therapy. They were going to do this against my will. Only through the grace of having my cousin advocate for me did this not happen. She stepped in on my behalf and sacrificed much time and many hurt feelings on her part to save me from such drastic measures. I'll always remember her saying that "you never give up on anyone."
I ended up in a hospital in a nearby large city that was dreadful. They promised a six week stay, and when I arrived told me I was to be there for two years. I spent the next six weeks putting all my energy into going home. I vowed off suicidality, got home and went back to work. I remarried and carried on. Still nothing was yet healed.

The seizures also carried on. Apparantly some epileptic some psychogenic. My second husband was bipolar and the marriage turned disastrous. Five years later we were divorced. Six years after that he committed suicide.

The Rest of Charlene's Story

I moved to California after the divorce to begin a new life. I continued to periodically have seizures. In 2003 I met a wonderful epilepsy doctor in Sacramento who suggested I get a vagal nerve stimulator that I believe controls any epileptic activity I may have (I also take antiepileptic medicine).

I still have periodic seizures that I believe to be psychogenic originating from the earlier trauma. This year (2007) I found an article stating that EMDR (see the link on EMDR on the home page)has been getting success in Tampa, FL. Coincidentally enough, my psychotherapist is trained in this and we have begun. It is very gentle and thought to work only with folks with trauma histories. It is not easy work as it does bring up memories, but well worth the outcome!

I have a very dedicated family physician who referred me to a physical therapist who specializes in trauma. It is going well. He works with assisting the body release the 'body memory' of the trauma.
Again, not the most pleasant work ever, but well worth the investment due to the outcome. I'm very excited about both these modalities. I feel like a prisoner eyeing the end of a sentence.

My family doctor has stuck with me through thick and thin. As have many friends, family members and other health practitioners over the years who believed in me no matter what. I deeply appreciate you and thank you from the bottom of my heart.

I can't tell you how many times I've been accused of faking, or verbally abused in other ways in the emergency department on the hospital floors - by nurses, doctors, etc. The seizure support group I've gone to also reports similar stories. These gentle people I'm working with now take the shame and blame out of the experience and focus on the healing process. You can see how long it has taken me to get to this place. I'm hoping to help you get there quicker than I did.

I've also done a lot of ground work in the therapy chair. Body work is not easy if you have been physically traumatized, so you must go slow, maybe read some books first, "Waking the Tiger" by Peter Levine was real helpful to me, though I'm unable to do the exercises. Professional help with the right person is always a good idea. I am not a mental health professional and this is not mental health advice.

I hope that my story is supportive and helpful to you. Please give feedback by email or in the guestbook. I wish you well on your healing journey.

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Non Epileptic Seizures Defined - Excerpt

For Entire Article, go to: http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Professional/nonepileptic.cfm

Nonepileptic Seizures
Treatment of Psychogenic Nonepileptic Seizures (NESs)
Positive empathetic approach

Nonepileptic seizures are behavioral events that resemble epileptic seizures but are not caused by electrical disruptions of the cerebral cortex. Although these episodes are sometimes called pseudoseizures, this term should be avoided, because there is nothing false, fake or insincere about nonepileptic seizures to the patients who have them. In their view, they experience real seizures.

Even experienced epileptologists can mistake nonepileptic seizures for electrically-based (epileptic) seizures and vice versa. Epileptic seizures of frontal lobe origin are those most commonly mistaken for nonepileptic seizures. Up to 20 percent of patients evaluated at adult epilepsy centers have nonepileptic seizures. Some of these patients also have epileptic seizures, which complicates the diagnosis. nonepileptic seizures in some patients can be misdiagnosed as epileptic seizures and patients exposed unnecessarily to anti-epileptic drugs (AEDs). While AEDs are often helpful in treating epileptic seizures, they are of no benefit in treating nonepileptic seizures. Other potential consequences of inaccurate diagnosis are delayed psychological therapeutic intervention and the social stigma that is often associated with epilepsy.

Classification of Nonepileptic Seizures
Nonepileptic seizures are classified as having a physiologic or a psychogenic basis.

Physiologic nonepileptic seizures are caused by a sudden disruption of brain function, from a metabolic disturbance such as profound hypoglycemia or hyponatremia, or ischemia from cardiac arrhythmia.
Psychogenic nonepileptic seizures result from stressful psychological conflicts or major emotional trauma, often stemming from sexual and/or physical abuse, current or in the past, especially in childhood. Other causes include major life events such as death or divorce.
Diagnosis of Nonepileptic Seizures
The differential diagnosis of physiologic nonepileptic seizures should include organic brain lesions, cardiac arrhythmias, hypoglycemia, syncopal episodes, migraines and transient ischemic attacks.

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Emergency Department Protocol, in Development

-to decrease costs, admissions and increase compassion and education.

If you are a medical care provider, especially in an ED, please feel free to give feedback either by email or in the guestbook. The goal is to come up with a workable emergency protocol that would work for a variety of emergency rooms - decreasing time in the ED, costs, frustration and increasing compassion and education.

PROTOCOL:
Assess and triage per hospital protocols.
Once PNES is established and epilepsy/other causes ruled out:
1. Establish whether patient has previously known PNES.
2. If yes, used current vernacular of 'non-epileptic seizure', or PNES as opposed to pseudoseizure that implies faking. These patients have most likely been accused of faking many times and may react.
3. If patient continues to be disoriented and/or obtunded, give warm blanket if appropriate, dim lights and have supportive family member/significant other stay in attendance.
4. Allow 1-2 hours for recovery if appropriate and assess for discharge to home.
5. If in 'non-epileptic status' may need to consider admission simply for observation. During this stay, take the opportunity to get the appropriate mental health provider to educate patient and significant others along with medical staff. This may prevent readmission as long as patient breathes through activity.
6. Small doses of anxiolytics may be useful in assisting patients in relaxing. If 'drug seeking' is a concern, coordinate with either family physician or current mental health provider if possible.
7. Be patient with the person's denial of PNES diagnosis. The stigma of shame and blame is deep and reinforced by our own medical field. Recovery from this disorder/diagnosis can be complex and long, and finding the right treator can be very difficult.
8. Offer educational materials/referrals if your facility allows it. Not just any mental health provider knows how to deal with PNES. They need to have experience and/or training in somatics or related fields.

Psychogenic Seizures - A place to find explanations and treatment options.

A place to learn about treatment for psychogenic nonepileptic seizures.

Contents at a Glance

Contents at a Glance

Charlene's Story

The Rest of Charlene's Story

Amazon Books

Bloomings

Non Epileptic Seizures Defined - Excerpt

For Entire Article, go to: http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Professional/nonepileptic.cfm

You can bloom too!

Emergency Department Protocol, in Development

-to decrease costs, admissions and increase compassion and education.

Psychogenic Seizures

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