Psychogenic non-epileptic seizures: What are your 2015 resolutions?

2015“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” Lorax quote-Dr. Seuss

This simple quote is powerful because it is true.

Psychogenic non-epileptic seizures represent a grave health condition that is still sorely understudied and understood. This condition often wreaks havoc on the lives of those afflicted by it because of the seemingly unpredictable and risky nature of the episodes, loss of independence, financial stress, and depression, anxiety, and trauma that are almost always part of its foundations. As if this were not enough of a load to carry, the condition is so poorly understood by the health profession that patients are frequently misdiagnosed or mistreated by emergency healthcare staff who have the misconception that these episodes are somehow under the control of the patient’s willpower and are being used for attention or drug-seeking or for other nefarious benefits. Last but not least, the professional organizations (American Psychiatric and American Psychological Associations) that should be working on disseminating accurate information about this disorder and developing effective treatments are “missing in action.” They do not even mention psychogenic non-epileptic seizures (PNES) on their websites!

So my New Year’s message to you is that WE need to start caring and doing. Unless all of us who have somehow been touched by psychogenic seizures either as patients suffering the episodes, loved ones seeing someone suffer through the devastating consequences of PNES, caregivers trying to figure out the best way to respond, or health professionals working to diagnose and treat this potentially disabling and terrible condition do something, it’s likely that “nothing will get better” in the words of the Lorax.

So this year, let’s do something. Three goals we can start with are: *Developing educational materials and venues for patients, caregivers, and professionals. *Lobbying the appropriate organizations so they recognize and work to better the lives of those with PNES. *Raising awareness in the general public about PNES

You are invited to join the growing PNES community and work with us this year for this purpose.

7 thoughts on “Psychogenic non-epileptic seizures: What are your 2015 resolutions?”

  1. Lorna,
    Excellent write up! I’m really hoping all that are raising awareness, we will be identified and accepted.

    GREAT JOB with all you do.

    Thank you for everything.

  2. Michelle Battaglia

    i have a 10 year old son who was diagnosed with PNES last May. He is still have seizures everyday, in addition to a significant number of tics. I would love to be involved with a community who understands what people suffering from PNES are going through and are working towards improving their lives.

  3. My husband has this since April 2013. He is unable to work. We have 3 kids ages 9 ,3, 1. He’s in the third process of disability. Waiting for a hearing. Social security doesn’t seem to understand that he may have a seizure a week, when he’s not having a seizure he’s dealing with sensiivity to light, migraines, depression and constantly worrying about when his next seizure will be and he worries that he’s not providing for his family financially. It has been a nightmare. And has stolen so much from him.

  4. Thank you for saying what needed to be said. I really appreciated hearing it. I have often wanted to somehow get the word out about this very strange and misunderstood illness.

  5. Caregiver to my daughter who is now age 18 and has suffered prolonged bouts of multiple non epileptic seizures and left sided weakness from her face to her foot.

  6. Dr. Myers. I am so grateful for all the wonderful work that you do in spreading awareness! I am grateful to be a part in spreading that awareness, I hope that with your new book that our voices will also be heard!

    Thank you again!

  7. There are thousands upon thousands of people around this big blue gem of a planet who suffer from seizures that doctors have told them is all in their heads. I am only one of them…my started as soon as I sat up from having a heart scan. Dizziness and nausea. My first seizure followed. It is a long story but shared by many. Each with their own version. Seizure means uncontrolled movements, simple. I read a book called “Cracked” written by a doctor who says if it is not organic than it is all in your head! The book cover has a picture of a chicken egg with a crack in it. I still get seizures and I had one last night. My own family doctor will deal with everything about my body that can be given a pill for or sliced and diced but not for my seizure…all in my head.
    So I suffer and such is life.

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