Have you experienced emotional challenges associated with epilepsy?

@jakedduck1 I wanted to ask after my seizure or even before it when i know a seizure is coming, is it normal to feel nervous and anxious. Almost like your scared but you actually aren't scared because your use to having seizure and you've accepted them?.

@carnation
Hello,
I’ve had epilepsy for 52 years and I’ve had comments probably similar to yours. People can definitely be cruel and and people who have said the most hurtful things to me have been adults. But you just have to talk to these people and explain how serious your condition is and just tell them a little bit about it. I think it’s important for everyone of us who have epilepsy to try to inform the people So they know what’s true and what’s not, they need to understand the seriousness and the consequences that seizures can have. I think what I dislike most about having epilepsy is the stigma.
You basically just have to understand that people making these comments are ignorant and it’s our responsibility in them. I just don’t let it bother me. In the past when children have made fun of me sometimes I told them that that’s funny but then I would explain how serious epilepsy is and that not all people wanna hear a joke about epilepsy and that it’s best not to tell them at all unless you know the person and you know they don’t mind. I don’t really mind it epilepsy jokes, I can laugh at myself when other people take it much more seriously. as far as anxiety and depression are concerned, those are major seizure triggers although anxiety and depression are very common in people who have epilepsy? as far as fear is concerned at least for myself I don’t really have any fear, I mean nobody can tell when a seizure is going to hit if I have a seizure I have a seizure. just don’t be ashamed of the fact that you have seizures. Wherever you’re going to go whatever you’re going to do and whoever you’re going to do it with make sure those people are aware that you may have a seizure and instruct them on proper first aid. have you ever tried talking to those children and telling them that the jokes are hurtful and explaining why.
would you mind sharing with us why are you have a fear of going so many places? Just because you have epilepsy that’s no reason to not go out and live and enjoy your life to the fullest.
Bless you,
Jake

@jakedduck1 Hi Leonard, long time no talk. I just had a VEEG done. My whole life I had thought muscle twitches around my mouth were seizures. I have several of those a day. I never had a neurologist tell me otherwise. I had to have got that info from a neurologist, right? I have had epilepsy for almost 60 years, so multiple neurologists. My VEEG showed no seizures for 48 hours. The Epileptologist did see abnormal activity that he said was epilepsy, so yes I have it.

Now we are looking for blank stares or missing time, I have both tonic clonic and complex partial. The tonic clonic are well controlled. I am now unsure how well controlled the complex partial are. It is hard to tell when I have a complex partial since they are short in duration. Perhaps 2 tenths of a second? My wife and I thought I had one while on the VEEG but I didn't.

The VEEG along with a memory test did show a sleep score so bad the neuropsychologist said he hadn't seen a number that bad for years. So we are now working the sleep angle now. Not that we hadn't before. That is another long story though.

I am monitoring this site for connections between epilepsy and sleep but am not seeing much. It is a well documented connection so I continue to look.

Oh sorry, the Psychiatrist...I seen the Psychiatrist at the recommendation of a Counselor, probably for 2 reasons. In my organization there is a heightened awareness of suicide and I was probably exhibiting signs the Counselor was required to ask about. I did end up having a tonic clonic due to the stress and several other factors.

@mxyzptlk32
Are you sure you have Epilepsy or were you seeing a psychiatrist because you were/are having Psychogenic Nonepileptic Seizures (PNES) which are psychologically induced instead of having abnormal brain electrical discharges.
Jake

Well I have seen a psychiatrist and I have epilepsy. I'll leave it up to you whether they are related or not. After explaining the situation to the psychiatrist he simply said they aren't your friends. This was 10-15 years ago in a work environment and all of us had known each other for years. I considered them friends but that is ok if they wanted to play games I was up to the task. I just hadn't engaged that portion of my personality with them. You see they were working hard at being the gap between the sphincter at the end of the colon...but I am a natural. When I engaged they were wondering if they needed lawyers. I assured them they didn't. They knew where they stood and that was enough. They weren't my friends is what you should take away from this. If possible get a new set of friends. Yeah and I suppose it is ok to defend yourself too. While I have to be real careful when I engage that portion of my personality you probably don't. I am an introvert so my comfort zone is not going out. Covid didn't change my lifestyle at all. I have to force myself to walk out the door. I always have fun when I do. You probably will too. Good luck to you.

Jennifer, It is great to hear your son is active and has a support group. What type of seizures does he have? What stuck out the most in this message is that he swims competitively, with epilepsy! Swimming is a huge fear of mine. How do y’all manage seizures in order to allow for swimming?

@jenfossbru
Although it's always best to be as safe as possible people having Focal Aware seizure are generally completely aware and usually capably of performing complex tasks. In some States they are allowed to drive. I had a Focal Aware seizure while driving without incident although I wouldn't recommend it.
There have also been studies done that show people have fewer seizures when they’re exercising.
Does he ever have Tonic-Clonic seizures.
Best of luck,
Jake