Hello all

[Oeke]

Hi, I am Oeke and new here.

i am having epileptic attacks now for 10 years.

Since my status epilepticus the dosis of medication was increased.

But I still have attacks frequently. I don’t know the term for it, but it are small/short attacks and afterwards I am very confused and do things I can’t remember afterwards (as hitting people, running around, falling down the stairs, undressing myself). Since the use of clobazam (Frisium) I think that I don’t have the attacks during the nights anymore, but they still happen during the day around once every two weeks.

I am getting more and more isolated due to people getting scared when I am running around and do the strange things.
I hope to get more insight in how other people experience and cope with the attacks.

 

[Porkette]

Hi Oeke,

Welcome to the CWE! I had absence status seizures a few yrs. ago when I was put on the drug Neurontin but then
after I went off the drug the status seizures stopped.
I'm not a neurologist but I am wondering if you are having tonic clonic seizures also called grand mal seizures and maybe
myoclonic seizures especially if the seizures happen when you go to bed or when you first get up in the morning. I had that
type of seizure also but once I went on vimpat those seizures stopped.
You may want to try using the medical marijuana (cbd) my Epileptologist told me to start using it for my seizures and it
really helped me a lot now my seizures are the lowest they have ever been and I've had them for 51 yrs.
It's up to you but I found that the more open I was with family and friends then they understood my seizures and they
weren't afraid to be around me when I had one.
If you haven't started keeping track of your seizures get a calendar and write down what time the seizure happened and
the type of seizure you had. My neuro told me to do this and he saw a pattern in my seizures they would always happen
on the 3rd week of the month and all of that was do to hormones changing each month. Try taking vitamin B12 once a day
that helps calm the nerves I take 1000 mcg. a day.
You will find very kind and caring people on this forum. It's a great place to learn a lot and make a lot of good friends.

Wishing you only the best and May God Bless You,

Sue

 

[valeriedl]

Hi Oeke it's nice to meet you!

You could be having focal seizures and depending on what else you are doing during a seizure possibly tonic clonic also.

During my seizures I'll do things and I never remember that I did them. I usually don't even know I had the seizure unless there's someone there to tell me I did. I might walk around, pick things up and play with them. I've had the seizure in the living room and walked to my bedroom during it and went to sleep. I'll wake up a few hours later and wonder why I'm in bed wearing my clothes and not my pjs. But the one I can't believe I did was walk around the house with a hot curling iron in my hand. I didn't even know I did it until someone saw the curling iron on the kitchen table and not in the bedroom. I ended up with third degree burns on my hand and had to get a skin graft. I never felt a thing, even when I came to.

I can get very violent during seizures. I have a pill that can be put in my mouth to help bring me out of the seizure. When my mom tries to give it to me I'll usually try to bite her or punch her.

I've had a hard time with epilepsy and friends. The more they know about epilepsy the easier it is for them to understand it. You don't know what you're doing during a seizure.

When I started dating my current boyfriend we had a long talk about what happens during my seizures and what to do. On our third date I had one in front of him about a mile away from my house in the car on our way out to eat. He brought me back to my parents, stuck around till felt ok then went home, though it was going to be over after that but it wasn't. On one of the first nights he spent the night I had a seizure around 3am and lost my bladder. I woke up and felt that the bed was all wet. My boyfriend, who had to be at work at 6am, helped me take the sheets off the bed and put them in the washer then went back to sleep. Thought for sure it was going to be over after that - well he's still around.

Defiantly keep a seizure diary. White down when the seizure was, what you did during and after it, how long it was and anything else that you think is important. Talk to your neuro about it. Finding the right med to help with your seizures can be hard. Clobazam might be helping but something else might work better. You may never stop having seizure but it could reduce the amount you're having.

 

[CathyAnn31]

Hi oeke, welcome! Stick around, pretty awesome folks who can all relate.

 

[Bernard]

Hi Oeke, welcome to CWE!

Sounds like you have partial seizures and behave oddly while post ictal. I'm on the other end of this issue as my wife has seizures. She used to argue with me when I would tell her she's had a complex partial seizure (for her - just loss of consciousness mostly, never mobile while post ictal and her post ictal phase usually only lasts about 1 minute). We've been a wild roller coaster ride over the last 25 years or so - life with big swings between ups and downs. We all do the best we can.

 

[Sabbo]

Hello. I have simple & complex partials. During my complex partials, I have no idea of what I'm doing or how long they've gone on--especially if I'm alone. (I don't have auras before them). The only way I know that one has occurred is when a witness tells me, or I do something to myself or my surroundings when alone. Another way I might note the occurrence of one is that a lot of time has passed or I'm suddenly in another room or wearing different clothes.
I've taken EVERYTHING out there for my types of seizures, but nothing seems to help. Every time I start a new AED, things go great for a few months, then the breakthroughs start again. I'm currently taking 500MG Zonisamide & 200MG Xcopri daily, & I still have 1-2 breakthroughs per month.

 

[Oeke]

Thank you all for the warm welcome.

The reactions all sounds too familiar.
I don’t have grand mals anymore, but can’t seem to get the partial attacks under control.
still happen at least once very 2 weeks, but I could be more often because I only found out when I wake up in the morning and i hurted myself or when someone tells me.

I will contact https://www.kempenhaeghe.nl/en/ again.