As most of you know our family has been affected by many weird and rare illnesses. The latest is Psychogenic Non-Epileptic Seizures or PNES. Once we determined that our son was not having epileptic seizures we had to learn what causes psychogenic non-epileptic seizures (PNES) so that we could help our son.
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It is all very confusing because there are not a lot of answers. Why was our son having these seizures and how could we help him. His Psychiatrist, of course prescribed five medications. This didn’t make me happy. However, Because our son also has Bi-Polar Depressive Disorder we felt we needed to try whatever she suggested.
The prescribed medications seem to decrease the number of seizures but hasn’t stopped them completely. UGH. My sons seizures predominately happen in his sleep but he is now having them during the day. After a seizure he is covered in sweat and very sore. He describes it as being hit by a truck. Every muscle hurts for sometimes several days.
So like every other illness and disease in this house I research and research and research.
What I Have Learned About PNES
- PNES happen due to negative interaction with a person or people. Interactions that bring up emotions of family conflict, abuse , inadequate personalities, inability to express self, or difficulty expressing anger and emotions.
- Episodes may happen due to emotional problems or to internalized conflicts. People with PNES may, misinterpret or over interpret occurrences in the environment, including people in whom simple partial seizures may occur and elaborate into PNESs.
- It is estimated that 75% of people with PNES are women.
- Psychogenic Non-Epileptic Seizures usually start to manifest in the late teens and early 20’s.
- Head trauma and cognitive difficulties may also be a cause or trigger PNES.
- People that have PNES may have other psychological problems such as Bipolar disorder, depression, narcissistic, border-line disorder, avoidance disorder, passive-aggressive, anxiety disorders and substance abuse.
- People with PNES may have a history of psychosis or schizophrenia. Inner conflict of ones own behavior, family situations and traumatic experiences can bring on PNES.
- PTSD, post traumatic stress disorder is being studied more as people repress their feelings of traumatic experiences. Many people with PNES may not even know that they have repressed the memories or experiences that result in PNES.
- Twenty percent of all reported seizures are PNES.
Understanding PNES
Unfortunately, understanding PNES is difficult and there is no one answer or treatment for everyone. Research has shown that medications work for some but not for others. Counselling is a great options and benefits many individuals with PNES.
Because PNES is usually caused by some underlying psychosis or other mental illness there is not a one size fits all treatment.
I Found This Goals & Means Chart by
Ronald P. Lesser, M.D.
The chart maybe helpful for yourself or someone you care about that is having PNES. Goals of treatment and the means to reach those goals.
| Goals | Means |
|---|---|
| Acceptance | Explanation |
| Motivation | Exploration |
| Understanding | Counseling |
| Psychotherapy | |
| Control | Biofeedback |
| Counseling | |
| Meditation | |
| Medication | |
| Psychotherapy | |
| Relaxation therapy | |
| Consolidation | Follow-up |
| The table outlines potential goals for patients with PNES in the left column. | |
| The right column outlines potential therapeutic means to meet these goals. |
Privacy Laws Make it Difficult for Parents to Help Their Adult Children
Privacy laws are set up to protect people, but in the case of mental illness and PNES these laws make parents feel helpless. Because many people with mental illness refuse to admit there’s a problem it is sometime impossible to get them help.
I know for us I feel blessed that our son, although very challenging at times is really trying to work with us. As a young adult it is hard to admit that you have a mental problems that need attention.
I hope all of you struggling with PNES and/or mental illness, that you find the answers your looking for to help you and your family. I know we will continue to search for answers.
In Closing
I am continuing to learn as much as I can about PNES. It is a very complicated diagnosis and not well understood. Some people with PNES are accused of faking or looking for attention. Sadly, this can have a very negative affect on the person having the psychogenic non-epileptic seizures and result in more seizures.
Mental illness being an underlying symptom of PNES makes it hard to stop the seizures. I can only recommend reaching out for help. There are support groups, Facebook groups and professionals that can help you or your family member.
Informative! I am sharing with a friend who will appreciate!
Thank you. Hope it helps.
My son also suffers from this…it took 12 years to get a diagnosis.. They are now monitoring his heart, so I am hoping they can get the psychological emotions under control, so it doesn’t affect his heart anymore.. Thank you for your insight
I had no idea Holly, Wow we have a little to much in common. I hope they keep things under control. Best wishes to you always.
just a note, my son ended up passing away from a seizure this year.
Wow, this poѕt is nice, my younger sister is аnalyzing these
kinds of things, thus Ι am going to convey her.
Hello,
Over ten years ago I was diagnosed with PNES. I have explained my health issues to countless people. I read anything and everything associated with it. You have a lot of good information which was helpful. I trained a service dog to respond to my seizures. She has given me some sense of independence back.
Thank you
wish you luck
My daughter was diagnosed in August. Have been unable to find a doctor that understands PNES to help her.
Im So sorry, Have you found help? My son died from his seizures and sadly they weren’t PNES as the neurologist suggested. They were full blown seizures and that is how he passed away. I hope you find the help for your daughter that she needs – Does she have any other symptoms like chronic illness? aching joints and bones, headaches?
Hi I was diagnosed with PNES after 22 years of having them off and on, til my stroke 6 years ago I’ve been having anywhere from 15 to 80 a month . After intense therapy and RAPID eye therapy I’m able to hold them off about 50% now that’s a win considering my body took a beating with those things. I hope your son gets better their not fun and unless your going thru them no one will ever understand the pain the emotional side of it. I saw this after I just had ten tonite and 16 last week . My triggers are many but it’s interesting this afflicts 75% in woman . Learned something new . Thank you , Deanie
We lost my son from a SUDEP Seizure.
Hi Kim- I read your blog and your update… I’m so very sorry. You responded to a woman who’s daughter was recently diagnosed with pnes and you asked her if she had any other symptoms such as aching joints , chronic illness..and you mention your son was diagnosed with pnes but was misdiagnosed? Can you further explain your your questions to her and how your son was misdiagnosed? My daughter was recently diagnosed with pnes due to a VEEG performed during our recent 4 day hospital stay… the neurologist has canceled our appt based on non-medical nature of her seizures. But she has chronic pain with focus on joints and muscles, not headaches really but she misses so much school due to her pain and general feelings of unwell. We are going to the rheumatologist in 2 weeks for lupus suspicions…. any information you can provide would be helpful…
Thanks so much for sharing your story.
Alex I am so sorry i didnt see this sooner. How is your daughter? We have had a crazy year and moved 2500 miles away. I hope your daughter is doing better We lost my son after the misdiagnosis to a SUDEP seizure.
We lost my son too. Nash’s weren’t PNES either We lost him to SUDEP
Did you find help for your daughter. We lost my son and sadly I am way behind on my blog etc. He died from a Seizure and they were misdiagnosed and not PNES
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