Non-Epileptic Seizures or psychogenic non epileptic seizures (PNES)

My hisband was in a motorcycle accident 2014and he start having seizures he had a bleed on his brain. 2014 they said it was real seizures but after many many test doctors many things they say they are not real seizures. i dont know what to tell ER when i have to take him. he cant work because he is off balance and gets confused easily. So i know as a man father and always worked 2 to 3 jobs at a time. now cant work i know it bothers him. he sees a counselor and a psychologist but he still has them. the doctor at ER 2 Nights agosaid for me not to bring him to er unless he is hurt to just let him have these attacks seizures whatever at the house. sometimes they will go on for 30 min stop and then start back. i am afraid it will hard him doing it so long. the doctors at hospital say they cant do anything i just wish someone could help his reg doctor would like us to go to mayo see if they can help. We are afraid if we go to mayo they are gonna tell us the same and send us home with same as all do here. we live about 5 hours away so i dont know what to do its an awful thing we feel helpless

i feel for anyone and their families dealinh with this because it is so hard

Welcome to Connect, @hosey70
I can imagine how hard this is for your husband and for you. Here a few related discussions you might like to read on Connect:
- Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
- Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/

Hosey, what do you do when your husband is having an episode? How do you help keep him safe?

i make sure he isnt gonna hit anything or fall then i talk to him his neurologist gave me diazepam to give him to help stop them. but he holds his breath looks like he is being zapped his legs and arm arm stretched out fist are tight and he holds his breath. they look so painful sometimes i can get him to swallow pill between them. his last for 30 to an hour sometimes he has one comes out of it goes right back over and over. i dont want to not get him to er and something more happens

so his reg doctor said we might need to go to mayo to see what the doctors there think. i am afraid they will just look over the records of all the er visits test and notes from all the many doctors he sees and say the same thing. with no help. he use to be a forman and a firefighter now he is off balance when he walks sometimes and he is confused about normal things he would have no problems with. so he retired and us on disability. i feel the seizures or attacks he has are making these things worse. just feel bad he is going thur this.

You might consider being checked for BPPV. My kiddo was treated for it and it seemed to help her in regaining her physical abilities again.

my beautiful 25 year old daughter has had hand tremors since she was in 3rd grade. We have had 3 MRI over the years and all was normal. Thanksgiving day she started to feel bad so she layed down and her legs started to shake. more like jerking very slowly. we talked the entire time while this was happing. she had been prescribed Xanax for her tremors if they became bad but only had a taken a couple over the last few years. So she took the medicine and finally an hour later they calmed down. We are scheduled for an EEG. I would love to hear if this sounds familiar to anyone?

@ hosey70
Sorry but I just noticed your post. Seems I am always a day late and a dollar short. How is your husband now?
On thing in particular got my attention and concernes me. You mentioned the episodes sometimes last for 30 minutes then continue. Can you tell me how long from the end of the first episode until the next one starts? Does he only have 2 of these episodes and then no more?
I am assuming these episodes are or appear to be generalized tonic clonic (convulsive) in nature.
Has he ever had a warning that one of these episodes is going to happen, like having an odd feeling?
Seeing strange lights, patterns or something that isn’t actually there?Smelling, tasting or hearing something odd or exhibit any other peculiar behaviors (Auras?)
Can you describe exactly what happens during these episodes from start to finish?
For example how does he breath? Are his breaths and exhibitions deep and prolonged? Are the breaths loud? Does he ever turn blue?
At the end of the episode is he sleepy?
Is he confused after the episode?
Does he bite his tongue?
Does he remember the episode at all?
Do the episodes ever begin during an emotionally stressful time?
I assume he has never had an abnormal EEG. In and of itself that’s not really a basis to say it's categorically a Psychologically induced episode (Psychogenic) since 50% of people with active Epilepsy have a normal EEG.
Has he ever had an ambulatory EEG or been admitted to an Epilepsy Center?
During these episodes are his eyes open or closed?
Has he ever been prescribed anti-convulsant drugs that had no effect?
I basically agree with the ER doctor who said “not to bring him to the ER.”
Under normal circumstances even if it is indeed Epilepsy it's seldom necessary.
Some exceptions are if it’s your first seizure, if a person is pregnant, if someone is diabetic or if the seizure doesn’t stop after five or 10 minutes.
If he does in fact have epilepsy and seizures go on for an extended time like 30 minutes that you indicated it could be a dangerous condition called Status Epilepticus which is a medical emergency and needs immediate medical attention. If your unsure of his diagnosis deciding to go to the hospital could be a difficult one.
One thing you could do that would be beneficial to the doctor is videotape these episodes.
I would not hesitate to go to the comprehensive epilepsy center at the mayo clinic because there they are able to determine by video EEG telemetry if his seizures are Epilepsy or are psychogenic episodes.
Take care,
Jake

For those who have been officially diagnosed with PNES, what are your symptoms and what treatment(s) have you used that was/were effective? What do you believe is the cause of your PNES?

Hello @lindaibm. I wanted to connect you with other members who have shared about PNES, so you will notice I have moved your post into an existing discussion which you can find here:
- Non-Epileptic Seizures or psychogenic non-epileptic seizures (PNES): https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/

Member @jakedduck1 has shared some information and may be able to come in and share more with you on the topic.

When were you diagnosed?