Psychiatric Problems Associated With Epilepsy

Hi, @carnation - I think what you are speaking of here is psychiatric issues that are quite particular to having a diagnosis of epilepsy (e.g., anxiety about a potential seizure on an airplane trip, fear of the next seizure or of how you will ever get control of your seizures)? If so, this is a very worthwhile topic to bring up that I believe many patients living with epilepsy will identify with.

I also wanted to invite @jakedduck1 @dap @jenfossbru @cc001 @boston2mayo @robertjr @williamdj to join this discussion.

Will you share more about your experience of being made fun of by kids, carnation, if you feel comfortable? What happened?

the partial complex seizures started when i was 10 years old, in catholic grammar school. After the seizures the kids made fun of me because they didn't understand them and it hurt my feelings. Even after high school I had seizures and people made fun of me until I was 19 years old and found my boyfriend to be husband that I’m still with today. He always stood in front of me and stopped rude people from making fun of me and mocking me out.

I have fear of going places because in the past years I have fallen down and broken some of my ribs while having a seizure. My husband has caught me many times from falling but at times he’s not always right next to me.

@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

@carnation
The potential of getting hurt during a seizure is all too common. I have dislocated my shoulder many many times and I’ve had three surgeries because of it. Now they want to replace both of my shoulders. I’ve had more stitches and staples in my head than you can imagine. I’ve fallen off the roof twice, I fell off of a ladder I fell out of the trees I got stuck on a fence. Of course I had no business being in any of those places. I had a focal impaired seizure while I was driving, fell off my bike, fortunately in between between parked cars and not in the traffic. I have broken bones too but you can’t let fear take over your life you have to go out and live your life and be happy and enjoy yourself.
Take care,
Jake

@carnation
Hello again,
May I inquire as to what your Focals are like. For the most part I have tonic clonic seizures. I’ve had over 13,000 Seizures and being kind a chronic I fall each time. Do you have Auras? Are your seizures under control now? What medications are you wan if you don’t mind me asking?
Health and happiness,
Jake

My son did see a psychologist for a few months to work on his anxiety & fears. He is in high school and a competitive swimmer. That helped a lot to get him out of the house & live life again. Lucky for him, his seizures happened at home. His friends know, but others at school don't. Teachers have been very supportive. I believe his therapist really helped. We started that early on with his journey. My advice, go talk about it with a professional. It's too much to sort out on your own. Best- Jennifer

@carnation
Hi, I am 44 and just had a grand mal seizure after being well controlled with meds for 16 yrs. I've had auras throughout these years but this one was different and stronger before the grand mal. I cannot begin to explain the severe anxiety I have now and the depression and fear. I am alone all day, can't drive, don't want to go inside the store by myself, among other things. I need to see a psychiatrist to get over this anxiety but as of right now, I am going to see a epileptologist to see what went wrong and hopefully fix it. Then I will concentrate on getting my anxiety under control.
As far as people making fun of you, they are horrible people. You can try to educate the children. Maybe call the school and see if you can pass out flyers or put on a presentation to help educate them. Or ask the kids to delve into the electronic world and tell them to look up stuff on YouTube or the web. Best wishes and Blessings, take care!

I'm epileptic since my 22 years old and am 54 now. My kids are 32 and 35. Never had the kids do that but there were bigger problems going on with them that would have made a granMal look like a nice rest. Had to deal with it with one of their friends Joe, while my kids were in the room, ages 14 and 11. My kids kept quite waiting for my response. My suggestion is debatable by Mayo staff, and your presentation will have a lot to do with it. I said, "Sometimes babies have epilepsy. I hope you don't get it, but you could, and you'd look just like me bouncing on the floor. Who wants to go to the movies tonight?" In a very soft voice Joe said, "would it be ok if I went too?" I said, "sure, you guys go in the bedroom, decide what movie and Joe, you tell me what movie when you come out in 30 seconds." Went great. Joe got to be somewhat in control and liked by my kids again in 30 seconds. When you offer something (like the movies or..?) make it something they would undoubtedly like, even if ice cream before dinner. Let your Joe decide how much ice cream and let them eat the whole container. It will be worth every minute of it.

As far a psychiatrists at 100-200 an hour, be sure to do your research first, as to the kind of practice they have. Some may not have 3 clients and practice marriage and family. I'm not thinking of what kind of practice...Leonard here can probably tell you in a bit. How well will the meeting go? That's a tough one. For me I'd say you'll want to go with paper, pen and all your items to be addressed. Hopefully your first meeting will be free but if not,,, after you have your items for addressing, in the meeting, you NEED to ask, "Am I the kind of client you treat?" If they say yes,"What kind of a plan do you have?" They need to do, at very least, a short verbal sketch. If they say, "no, but I'm sure we can work with you," don't go back. No hard feelings needed. You can't go to get new tires at a gas station. Visit the free ones first.

My mental health with epilepsy, I don't necessarily endorse for all, is, "oh, it's ok, they don't know any better. Or, you can understand that they can't really understand and it's you who is giving compassion for their not understanding. I still feel a bit of a loner, probably did when I was 2, but that's inevitable now. I don't feel pompous about it. In my case epilepsy is not visible like physical disabilities, but enough times when people find out it becomes one for them. Just keep talking like nothing is wrong. It will be a load off for you too.

I’ve had the Epilepsy with the partial complex seizures for 44 years. When I first got the seizures It took time for me to understand what the seizures were, and the seriousness before I could explain to anybody else. I always tell people when I meet them that I have epilepsy and the seriousness of them that if I have one to sit me down because I have Auras in some seizures but not all seizures, and I black out in all seizures, if I’m not sitting down I will or can fall down. I don’t want to be in the hospital after a seizure. That’s probably where the fear comes into my life. I do a lot of things and go to a lot of places. I do have anxiety. People are rude and ignorant who make jokes of people who have seizures.