Psychiatric Problems Associated With Epilepsy

@deeebeee
I am curious if your son has a mental health diagnosis that may prevent him from understanding the potential seriousness of this condition?
I know it's very frustrating. I deal with similar issues with my cousin.
Best wishes,
Jake

@deeebeee That's not an easy place you are in. The more you show concern and want to talk about it, the more he pushes back. Is that right? If he's waking up with an almost severed tongue and soiled pants, he knows something is going on. You are probably right, it does sound like denial. Some people deal with issues my ignoring a problem. He could also be going through the stages of grief. The first stage is denial.

Below I have linked a wonderful resource. There is a lot of emphasis on death and dying but we can go through the stages of grief about anything.
https://grief.com/the-five-stages-of-grief/
•denial.
•anger.
•bargaining.
•depression.
•acceptance.

At this point he's probably getting more upset and pulling away more and more. Did I get that right? I hear that you love your son and you are desperate for him to get the help he needs. I can't imagine. This must be so heartbreaking. Unfortunately, you can't control what your son does or chooses to address but you can change how you react. I do not think you are reacting poorly. It just sounds like it's not working and there needs to be a different approach. You may want to think about few sessions with a therapist. This might serve two purposes. One, this has to be hard on you emotionally and psychologically and you can get that out. Two, the therapist could help you respond differently. Again, how you are responding is not incorrect. It's just not working. A therapist will help you reverse your approach. Instead of showing concern, you can act like it's no big deal. Hard I know. This is why a therapist would be best to help in this situation. If you act like it's no big deal, then he is no longer putting his energy into fighting you. He has to sit with the issue. I bet he's really scared.

I know I threw a lot at you and I hope it is helpful and not overwhelming.

Good morning,

Thats a good question, but no he does not.... he is stubborn and has
never even liked to take aspirin or cold medicine.
He was 22 when he had his first set or 'episode' of back to back seizures.
No history at all, he has only had 3 separate
incidents but, each time he is sleeping and has between 4-7 within a 90 min
window. Each one is much worse than the
previous and they start being closer together.

The very first time he 5 in a row and literally almost bit his tounge
off. He also is big guy ... a team captain and starts
every game. He will have his entire face and chest covered in popped blood
vessels, and the doctor says there also high amounts
of acid in his blood from being released by muscle strain. Not sure if
that happens to everyone, but even with those remaining
after effects he had no recollection of anything and I had to beg him just
to let me take him to the ER.

They prescribed meds and said after about a week he didn't like the
way he felt. He was slurring his speech, it made him forgetful.
We still had no idea why he had the seizures, all tests came back
normal. No one stressed the importance of taking this medicine or
even explained that he could have a condition. We couldn't get a follow up
with a neurologist for about a month. So he quit taking the meds w/o
telling myself or his wife. Only 5 days of no meds and he again in his
sleep started a string of seizures. He lives 5 minutes from me and Ijust
as I walked in, he was starting #3. I told his wife to record it - that may
sound odd but for him I knew it was the only way to get him to as
concerned as we were.

This time was really bad, in total there was 6. He was combative in
between seizures. It takes aprox 20 min to 'wake up' and usually have a
10-15 min
window before the next one will start. We called 911 and he refused to
go, just wanted to get in the bathroom to change into dry clothes.
Before he could get the clean stuff on.... he had another seizure, fell
into the tub naked. He had locked the door so the police had to break
down the bathroom door to get to him. It was so traumatizing, they
strapped to gurney no clothes and gave him medicine to keep him calm,
in case he woke up before arriving at the ER.

He woke up in the ER and barely remembered any of it. This time we had
video of me getting a flipflop in between his teeth just in time-
the tongue biting wasn't as bad that time. Him seeing me on video, trying
to keep him leaned sideways and hysterical trying to hold him
IS THE ONLY THING that kept him at the hospital to get the meds changed.
Now it's been a year seizure free..... until 2 months ago.
Apparently he stopped taking pills again! This time it took way longer,
about 2 weeks of no meds before he had another episode.
Everything was just the same. He doesn't understand how or why and seems
like he is in denial.

The doctor only prescribed a month worth of meds.... told me to ensure
my son would come in to see him and get more. So I'll be damned
if the kid breaks all the pills in half and has been taking 1/2 the
recommended dose. He been fine like that but, I'm sure the pills are gone
and
I'm just waiting to get the call. Its so frustrating and I'm at a loss -
he has a almost 3 y.o daughter and this is too much to go through.

Any advice? Stay well and thanks for even taking time to correspond
with me, its appreciated.

Hell,

Thanks for your reply, and I actually am speaking to a therapist! It
does help, I appreciate the advice. As far as my son,
He doesn't exactly push back, I mean he has a baby daughter so regardless
what he may or may not 'want' to do.....
he has to more than just himself to think about. Seems more like when the
doctors offer no solid answers he feels helpless
because he has no control. By him dictating whether or not to take the
pills - he feels like he still has some say so- if that makes any sense.
Plus our relationship has been strained at times, so if it's a stressful
situation, it can be hard for us to manage.
At the same time Im the only one he will listen to and the only one who can
calm him down enough to actually listen.
He also really prefers me to advocate for him with doctors, EMT, ect.
I really feel like my hands are tied .... I have to be careful how I deal
with this but seem to be the only person who can.

I thank you for your time and input, its nice to be able to share thoughts
with folks who are familiar! Stay Well

@deeebeee It sounds like you are handling the situation appropriately. Yes, not taking the pills as a means to feel in control sounds like a person that feels helpless, and understandable. It's good that you can at least get through to him sometimes and that you have a therapist to support you through this. He's lucky he has someone that understands him, you.

@deeebeee
“He doesn't exactly push back, I mean he has a baby daughter so regardless
what he may or may not 'want' to do…..
he has more than just himself to think about.”

Your son much accept the fact that he has Epilepsy. He has a responsibility not only to himself but to his family. You know how traumatic it can be to see someone have a seizure. I wouldn't think he'd was to put his family through that. Especially a 3 year old child.

“Seems more like when the doctors offer no solid answers he feels helpless because he has no control.”

It appears that your son is causing all his own problems. Stopping seizure medication can have life-threatening consequences.
This may sound cruel and heartless but if he truly cared about himself and family he wouldn't subject you, himself or his family to all the seemingly unnecessary misery that he has.

“By him dictating whether or not to take the pills – he feels like he still has some say so- if that makes any sense.”

Your son doesn’t seem to understand just how fortunate he is and how much “say so” and control over his Epilepsy he actually does have. It seems as though your son is able to prevent his seizures as long as he is taking his medication. I was not that lucky. My seizures were intractable for 44 years. I would’ve given anything do have the power your son has over his seizures.
Very dear friends have died from Convulsive Status Epilepticus or S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) who took their medication religiously and did everything possible to help themselves and lower the risk but still died. You'll most likely never hear a physician mention Ststus Epilepticus or S.U.D.E.P. If your son has nocturnal seizures getting an anti-suffocation wouldn't be a bad idea. Your son needs to understand the potential consequences of this condition and the impact it would have on his family.
Your son is the one who needs counseling far more than you. If you are finding comfort in therapy that's great but your son has got to accept his condition and he may need professional help to accomplish this.
I think Erica mentioned “you can act like it's no big deal” approach.
I personally disagree with that theory. I believe it would be more detrimental than helpful in someone with a seizure disorder. Just my opinion.
I, unfortunately, understand the denial, been there done that. Shortly after I had developed Epilepsy at 15 I went into Convulsive Status and was in a coma for 8 months. When I woke up 15 years of memories were gone, my entire life was gone. None of those memories would ever return. I've been in at least eight comas that lasted weeks or months that I remember being told about, many more I'm sure. I had countless episodes of Status, most of the time they were able to stop the seizures or put me out for only a few days.
Doesn't his wife make sure he's taking his meds?
He has to learn to cope with life, good or bad. Avoidance will only cause more problems.
Your son doesn't understand why, neither do I, neither do most patients, neither do doctors the majority of the time.
Anticonvulsant meds are powerful drugs and come with a myriad of potential side effects. Drowiness is usually always present. Concentration problems that increase memory issues. Speech, balance, dizziness, nausea, depression is quite common in Epilepsy patients and can lower the seizure threshold in some people.
I want to mention this and ask you one other question and then I will give you some peace this is very important in some patients.
Seizure patients should always get there medication from the same manufacturer and they should not switch from brand to generic or vice verse. I'm sensitive to this. My brother isn't.
Would you mind sharing what
medication/s your son is taking and the dosage/s?
Blessings to all,
Jake

both my daughter and grand daughter have it...here to learn more

I have had seizures for about 15years and I am showing the damage now to my body and to my brain. I am 36 but look much older, also I have been a drug user for many of years. K2 is actually what caused my first seizure. Unless that's what I was doing as a newborn instead of it being sids. My seizures just won't stop. I'm about ready to give up. My 5 year old niece has found me covered in urine and gurgling with heartbeat at 30bpm. I have a cyst in my throat on my thyroid now and I have a large mass of some sort on my cervix. My stomach is confused as well, it gurgles only after I eat. I also have to force myself to eat cause everything taste and smells foul. I keep getting urinary infections and sepsis. What am I to do

I am a meth smoker and marijuana smoker only. I do not snort or use needles. I only smoke

@nadolski Welcome to Mayo Clinic Connect. Having frequent seizures is a serious issue to have.

It has been shown that methamphetamines can cause convulsing and seizures.
Meth and Seizures - https://www.addictioncenter.com/news/2019/08/meth-overdoses-seizures/

Are you also smoking K2 in addition to the meth and marijuana? Have you considered stopping the use of illegal substances in order to address the seizure problem as well as the other medical issues?