Need advi

[Jake]

My 24 yr old son began having seizures three yrs ago. He has a Neurologist now, has had scans of all sorts, is on medication and still has seizures. The seizures themselves don't seem to be causing as much upheaval as the behavior post seizure. He has Tonic Clonic Seizures which seem to last 2-5 minutes followed by loss of consciousness, then the worse part is the waking up/coming to that usually lasts 10-30 minutes during which he flails around like a zombie, cannot communicate, is totally out of control, can trash a room quicker than 10 happy Labradors knocking everything off tables and shelves with their tails. This is all followed by me having PTSD over the whole incident and feeling completely helpless. Do others have these same experiences? Does he need a different doctor? Is he ever going to be able to live alone or do I need to accept this as my "new" way of life? I'm approaching retirement and can't imagine him having to always live with me and not being able to work and have a life due to these seizures. I need someone to talk to.

 

[Nakamova]

Hey Jake --

It can't hurt to get a second opinion from a neurologist on treatment options for your son. There are a lot of medications out there -- a second neuro could review the ones your son is on and perhaps suggest modifications or a different combination that might provide some relief. The neuro might also have advice for how to cope with your son's chaotic post-seizure recovery routine.

Was there a precipitating event for your son's seizures or did they arrive out of the blue? How is he when he's not having seizures? I imagine he has some opinions about the direction his care should take as well.

 

[Jake]

Thank you for your reply Nakamova.
This accidentally posted before I had a chance to explain.
The above message was sent to me and they were asking me my opinion. I’ve had epilepsy for over 50 years and I don’t have any children. I was hoping that someone here would be able to explain what I believe may be post-ictal confusion. I’ve just never heard of a seizure manifesting it self this this way nd was hopeful that someone here may have.

 

[Porkette]

Hi Jake,
Often when a person has temporal lobe epilepsy they sometimes get a hot temper after the seizure or before. I've had temporal lobe epilepsy for 48 yrs. and before a seizure I would sometimes get mad and break dishes or punch the wall and I was conscious during all of this. I later found out that the seizure med I was taking was causing a lot of the problems and after I went off of tegretol I was much better.
You may want to take your son to see an Epileptologist which is a Dr. that specializes in epilepsy and knows how to treat it very well. I saw many different neuros over the yrs. but after seeing an Epileptologist the Dr. did a DNA test on me to find the best seizure med for me, he told me what caused my seizures and I was able to have surgery to reduce the seizures. Tell your son to put a cold washcloth on his face and the back of his neck 3 times a day and anytime he starts to feel a seizure begin if he does this it will calm the neurons down in the brain a stop the seizure or reduce them. I was in a medical study a few yrs. ago and they found that my temperature went up a couple degrees but when I put the cold washcloth on my face it stopped my seizures and the coldness from the washcloth calmed the neurons down. My Dr. also put me on cbd oil
(med marijuana) and I am amazed at how that has brought my seizures to the lowest in my life. I wish you and your son only the best and
May God Bless The Both of You,
Sue

 

[Nakamova]

The above message was sent to me and they were asking me my opinion.

Ah! I was a little surprised by your post. That explains it.
Post-ictal delirium/aggression/psychosis is a known phenomenon, but there doesn't seem to be a lot of information on treating it at home. The articles below suggests that treatments to consider include treatment with pindolol (a beta-blocker), benzos or anti-psychotics, VNS, surgery -- none of which are without consequences of course.
A second opinion might still be helpful for the parent.

Successful management of postictal violence with pindolol in temporal lobe epilepsy

Treatment strategies in the postictal state

Postictal behaviors and symptoms often require special assessment and treatment. We review risk factors for postictal delirium and psychosis and management of agitated and confused behaviors in patients after seizures. Medical and emergency staff require ...

www.ncbi.nlm.nih.gov

Postictal Psychosis: Common, Dangerous, and Treatable