Epilepsy Support Group

I'm on a high dose of Tegretol, will probably be taking even more Lamictal, and take a small dose of Klonpin to round out my seizure control (which also helps my bipolar disorder). Just as I wonder why my bipolar disorder isn't fully controlled, I wonder why I still have seizure activity. Although I'm very grateful that I haven't had full seizures for a very long time, the "seizure activity", as I call it, is still noticeable to people. Recently I've started to have seizure activity again and a little bit of it has been in front of people outside of my home. The worse was in front of my psychiatrist, who knows my situation, but having Simple Partial Seizures I am aware of what is happening and I saw the look of shock on his face.

Since then, I have been nervous everywhere I go where I have to talk. In my AA meeting recently the leader asked me to read a long passage. I almost didn't, but it turned out OK in the end. I dream of going to the grocery store and having seizure activity there (actually I have to a small degree in the past - they just thought I was stuttering). The pharmacy staff all know I'm crazy and epileptic. What a combo!

I know many of you have dealt with far more severe seizures in public than me. How do you get over anxiety after having one? Do you keep close to home for a while?

I've had seizures all my life. When I was a teenager I decided I wanted to experience all life had to offer... Seizures and all. I think that was, and still is, the key for me. Just going out and experiencing life and all it has to offer. If the seizure happens, it happens and then it's over. No one is going to remember it tomorrow, (except the drug company representative I met during a seizure at the airport one year who I saw again at my neurologists office and mentioned my seizure to my neurologist) except me. If they do, they often ask me how I am, I tell them I'm better, thank them, then I move on. I know it sounds simple, but it has taken a lot of practice not to succumb to the embarrassment of the moment. There is too much life to experience out there for me to miss a moment to embarrassment. I've done things gone places and met some of the nicest people, some of them paramedics! It even surprises me.

I hope my experiences help you a little.

Thank you, ginnyV02

Why are you fearful of having seizures in public?

Why does it embarass you? I've had seizures all my life and if I have one in public big deal. If someone can't handle seeing me having a seizure that's there problem.

if you need to talk to someone I'm here and I'll talk to you .Belinda

It's been 48 yrs for and I've had brain surgery and 3 different VNS surgerys and taken 21-22 different medications before my heart pace maker start decently controlling.

Belinda

Post edited by: belinda1217, at: 06/13/2012 07:04 AM

Belinda, I'm sorry you've had to deal with epilepsy for so many years and that it required a brain surgery. I've only had seizures for about 6 years. I don't know the exact cause of my seizure disorder but it seemed to start during the worst times of my bipolar disorder.

Luckily to date I've only had mild seizure activity at my local pharmacy, in front of my psychiatrist, and over the phone with someone at a hair salon. Obviously the first two are more understanding than most but even my psychiatrist looked shocked. Yes, I am aware during seizures. I have Simple Partial Seizures.

My seizures seem to be linked to my bipolar episodes. I am at the tail end of a moderate bipolar episode now. My bipolar episodes don't seem to want to end despite, like you, numerous medications over the years and a hefty mix right now. My "big" seizures have occurred at home, an outpatient program and at the psychiatric hospital. 911 was almost called at home and at the outpatient program. It was scary in a couple of instances because it was mixed with bipolar mania. This is precisely why I have a fear of having a seizure in public. I don't want 911 called and in possible cases be arrested by police. I don't want to lose my driver's license if someone correctly identifies the "big" events as seizures. You see, I don't fall on the ground and convulse like many epileptics. Mine are often more violent, seemingly outlandish and vocal in strange ways. Perhaps yours are nothing to you at this point, but it is very very major to me.

heres 1 for you cthebird see what you think/if its possible for where you live. 'attitude' those that matter dont mind, those that mind dont matter' with that in mind in the village i live in i have 4 'safe havens'/shops. they know me well, i made a point of befriending the shop owners so if i start to feel bad i can go to 1 of them. obviously we all react/recover differently but as long as 'the shop owner knows' then they can put you in a safe place? is that possible where you live?

Thanks, Steve. I think that is a great idea. Unfortunately I don't really live in a village though. Not even the downtown. I'm sort of in suburbia and go to strip malls. It's not as friendly as a village. It would be different if I lived in my childhood hometown where my dad still lives.

My mother had an even more severe type of epilepsy than me. She would fall and have grand mal seizures. Some people in my hometown knew about her epilepsy, but she was quite secretive about it in general. She had a fear of having seizures in public at first but I think her determination not to let it stop her triumphed. She had even been taken to the hospital on a few occasions by ambulance because she had fits in the grocery store. I wish I could talk to her too about this. She died of cancer before I was ever diagnosed with SPSs. It's a strange coincidence that we both have/had seizures. I don't think there is any genetic connection, plus as I said my seizures are different.

when 911 is called and you don't want you can refuse it.

My seizures took yrs to get under control and I've busted my head open more times I care to remember.It's not that my seizures aren't violent they can be I have about 5 different kind and have had them all my life.When I'm having a lot I stay at home. I ride public transportation I've never driven never had a license.

I know what convulsing is I've done it plenty of time and fallen out of showers busted my head open and broken my jaw fallen on side walks. I've also worn a helmet when my seizure.If you have a seizure while driving you could kill someone.

Belinda

Belinda, thank you for your input.

obviously i dont know your geographics but? 'It would be different if I lived in my childhood hometown where my dad still lives' would it be worth considering moving nearer your dad/home town? it would certainly solve your dilemma. Added to that im sure there'l be alot of ppl there who remember your mum and her situation and know how to deal with yours. From what you say it sounds like its genetic, have you had any tests done on this or asked your dad about your mums side of the family, sisters etc