Presentation for College

[bighealey]

I am recently diagnosed. I knew nothing about it. Assume the worst and expect they know nothing.

Define it, symptoms, stats, types, treatments, responses.

 

[Janus]

Wow, Petero, i hope its ok with you that i use some of that great writing in my info and/or poetry. That is just amazing referencing the old school computers and Solid State material. I guess its because i really resonate with that complete understanding of the affect on the seizurer (sp?) And another thing; I have always felt a deep connection to God during and immediately after (postictal) i even am driving to get on my knees and pray facing east (i have no idea why) even when i am in public or a crowded sidewalk etc. I have this most strongly when it is a temporal lobe seizure where there is no shaking but a strong 'out of body' experience "for lack of a better term" i am so in touch with 'God' or the cosmic energy, what have you.

 

[Matthew74]

For me, one thing that is very frustrating about epilepsy is that there is no way I can possibly communicate what my seizures are like.

 

[Janus]

very strange how that is. i am curious that there seems to not be a vocabulary for it in English. It looks like an example of when words fail and only poetry can help convey that which is non-conceptual. And that can be asking so much of the recipient who may be in no place to bend their mind in such a way at that time. Hence we sluff it off as well you couldn't understand it.
Maybe fill me in if their is a way i have not heard of. If i am off the mark here please tell me.

 

[Janus]

One other description which may be good to see is the non conceptual content of:
The juxtaposition of these disparate modes of expression coupled with the broken texts and the fact that in today’s world some of the utterances evoke puerile chortling and even sometimes cause one to recoil, produces a kind of cognitus interruptus, which continually complicates, confounds, displaces, derails, and obliterates one’s expectations at every level of comprehension. Nonetheless, these incantations are frequently breathtaking in their beauty and expression of carnal desire. They speak across millennia, culture, language, and gender with an immediacy that brings a visceral shudder of recognition and connection.

 

[DayDreamer]

My goal is to show that we are equal by asking questions or making statements to whomever I am speaking with. Sorry if this bit of typing is overkill of stuff you know by rote.

Whenever I mention epilepsy for the first time, I first ask someone if they have ever felt deja vu, or for a very short time experienced a really heightened sense out of context, with no causative stimuli: Goosepimples/fear/happiness, or smelled/heard/felt something,... After this I try to explain how the brain works with its own specific chemistry and cells and the different areas of the where the above mentioned sensations are located. Those above sensations can brought on by an impromptu misfiring of a few neurons which is what I experience with epilepsy. Epilepsy means it happens repeatedly and has been captured on an EEG. What? Electricity in our body? Yeah.

Epilepsy often comes with abnormal amounts of neurotransmitters which could heighten and decrease your abilities depending on where your seizures arise. Artists, people of strong religious intent, depression, and memory are things which come to my mind. Having epilepsy does not signify a decreased intelligence as the diagnosis of epilepsy covers an incredibly broad spectrum of conditions. I noticed an abnormal heightened sense of touch, smell, sound and taste before diagnosis. This is similar to the sensory overload for autism. My family member(s) with autism let you know with sounds when they desire silence.

I try to emphasize the most common age to be diagnosed with epilepsy besides early childhood is older adults, as the risk of stroke rises. They or their parents have a chance to be gifted with this disease still. Everyone has most likely had a small tiny seizure or the risk of epilepsy. You get it from playing sports, driving cars, high stroke risk, having a brain, .... No one wants this diagnosis and it is not accepted by society or employers as it is still not understood.

Research is improving slowly since its start in the mid 19th century and once we understand some actual causes and chemical processes controlling these individual conditions will be easier. Eighty years ago type 1 diabetes was a fatal disease. Thanks to research in understanding both the cause and chemistry patients can survive.


P.S. My doctors often ask if I have ever taken drugs. There is no need with temporal lobe epilepsy from the descriptions I have had on trips. I often feel as though I am in an alternate reality during a seizure and I have no need for the drug use/ money cost/ other cons besides what comes with this disease. "Bang your head enough and you will never need to use illegal drugs, just prescription ones."

 

[valeriedl]

Let them know that epilepsy can't be cured. There are people that can go over a year with out having a seizure and there are people that can't got a day have without 3. Both people still have epilepsy. Some people can take no meds, one med or five meds to help control their seizures.

Falling down and hitting your head, or things like that, doesn't cause you have epilepsy and you don't have to be born with it. They have no clue what caused mine.

When I have complex partials I blank out and have no clue what I'm doing and don't remember doing it. Sometimes I'll get up and walk around the room or I'll just sit there and stare off into space. I can do normal things, like load the dishwasher or send texts which I've done before, but don't know I've done it. I was in the grocery store pushing the buggy and just started pulling things off the shelves and putting them in the buggy. I can talk normal but I really can't hold a conversation.

 

[Matthew74]

Thanks everyone!

I began by looking for more personal things about how you feel about having epilepsy, or how it colors your everyday life, but everyone seems to be telling me to emphasize basic factual info about epilepsy.

Obviously I know that almost no one knows much about it. I have been mostly ignorant about it for most of my life, in spite of having had it for 30 years. For example, I assumed that my seizures were more or less like everyone else's, which I now know not to be the case. (Apparently, mine are unusual.)

Would you all say that one of the most difficult things about living with epilepsy is that people don't even know what it is? Would you say that one of the most difficult things is that your own condition was not explained to you? Are you frustrated that doctors don't give you enough information, or that it's hard to get good information?

How does public ignorance about epilepsy, or even your own ignorance or confusion, affect your life?

 

[Janus]

YES, dr.'s never said anything about it to me until i went to them to say hey this is what's happening to me (and described a seizure). and how random it is and that there is no way to tell it is coming. And they would just say well, i don't know what to say... And eventually, years later, i complained enough that they started just experimenting with meds and guessing which ones may work. And which ones have side effects (i call them "effects") i could live with. Then i started having big, sustained, Tonic Clonic seizures, so they said well, it must be the wrong med. That so little is known about this can be painful. I had CAT. scans that showed "normal" activity of non-seizure brain (while i had a temporal lobe during the process that almost knocked me out.) Hence we know so little that it is often not seen or misdiagnosed .

 

[valeriedl]

I'm not embarrassed that I have epilepsy but I don't think the whole world needs to know. I don't walk up to someone I just met and say "Hi I'm Valerie and I have epilepsy. I haven't had a seizure in 8 days (because that's the first thing they ask you when you tell them you have epilepsy)" Like I'm at a alcoholics anonymous meeting.

If the questions comes up why I don't work or drive then I will tell them it's because I have epilepsy. A good bit of the time people will take about three steps back from me as though they think just because I said the words 'seizure' or 'epilepsy' then I'm going to fall to the ground and have one right there. After I tell some people they start acting different and don't want to stay around me, almost like they think they can catch epilepsy.

I didn't know that there actually were semi partial seizures, only complex and TCs, until I joined this web site. I knew I'd have those feelings but I never realized that they are actually seizures. Even now sometimes when I'm having a semi I don't realize that it's happened till it's over and I'm feeling normal again.

I don't like to tell my husband when I'm having semi partials unless it's a bad one because he seems to go crazy when I do. I don't know if it's because I can still communicate with him during it. From what he tells me when I have a complex he just lets it happen and makes sure I don't hurt myself.

My husband also insists he knows when I'm having a semi partial. I may be staring out the window looking at something but he thinks I'm having a seizure because I stare into space when I have them. I'll tell him that I was watching an animal in the yard but when he looks out he doesn't see it, usually because it's ran off.

I know what it feels like to have a semi, he doesn't. He tells me that I have 'that look' and I'm having one. I'll tell him that I'm not, and I know I'm not, I don't feel like it. We actually have gotten into little fights about it. I have a VNS and if I'm having a seizure, semi or complex, I won't cough after I use it. But if I'm not having a seizure and use it I'll start coughing like crazy. Almost every single time he's told me to use it because he knows I'm having a seizure I'll start coughing.

Being treated like a child is another big thing that gets to me. I was 26 when I was diagnosed with epilepsy. I had to move back home with my parents because my seizures weren't even a little bit under control and I couldn't live on my own. If I took a shower someone wanted to be in the bathroom with me. If I went to the bathroom I had to leave the door open a little that way they would be able to hear if I fell off the toilet. If I was in the bathroom for more than 5 minutes someone would always come in to make sure I was ok. If my parents went somewhere and didn't take me I had to go next door and stay with my grandparents because they didn't want me to be alone in the house.

They didn't want me going up and down the stairs by myself. I couldn't use knives. I wasn't aloud to cook anything, even in the microwave, because I might have a seizure while I was taking it out and spill it on me burning myself.

If they did take me places I had to stay right by their side and couldn't get out of their sight. I'm surprised they never got me a child leash. I think they thought I'd wonder off they'd have to put an add in the news paper saying "Lost female, with a description of me, last seen in Wal-Mart wearing jeans and a red shirt. Answers to the name of Valerie. Please call phone number if seen or found. Reward offered!"

The rest of my family isn't as bad now but my husband is the worse. He still won't let me out of his sight.

It was about 5 years after I was diagnosed with epilepsy when my dad and I went to the mall. He told me to go ahead and do what ever I wanted. He was going to get what he wanted then go to the food court and get something to eat. He said he was going to call me on my cell every so often just to make sure I was ok, which he did, but to take my time and don't hurry around. I think that was the best shopping trip I ever went on.

My dad is still the best about things with me in general. He actually asks me to do things that other people would never even think of letting me do. He asked me to paint the side of his store last summer. He had a step stool for me to use and told me that if I was going to get on the ladder to let him know. I told him I wasn't going to use the ladder because I'm not really a ladder person, not that big on heights. He laughed and told me that I was just using that as an excuse to get out of painting the entire wall!

If he needs help carrying something heavy he'll ask me to help him. No one else would think of doing it because "I might have a seizure and drop it!"

Not being able to drive is horrible. I hate it when I'm planning on making something and see I'm out of one of the ingredients. I can't just run out to the store and get it, I may have to wait a few days before someone is able to take me. It's hard to get together with my friends. They all live about an hour away. They have jobs and kids, which I don't. They usually have to come see me and if they can't find someone to watch their kids then they bring them along.

 

[Janus]

There are surprise benefits to some things that happen here. Not driving has given me so much, not the least of which is money. I love the public transportation and biking/walking is so good for the heart and mind. i doubt i ever would have got out of the car (full time) without epilepsy. Go figure.

 

[kirsten]

Would you all say that one of the most difficult things about living with epilepsy is that people don't even know what it is?

Not at all. What people know and don't know doesn't affect me in the least. When I want friends to understand, I speak to them and tell them about it.

Would you say that one of the most difficult things is that your own condition was not explained to you?

No. When I was diagnosed (in an era where the internet was not so widespread) I went to the bookshop and bought a book that explained it to me.

Are you frustrated that doctors don't give you enough information, or that it's hard to get good information?

How does public ignorance about epilepsy, or even your own ignorance or confusion, affect your life?

I have experienced some serious crises as a result of doctors not warning me, monitoring me, or educating me of certain side effects. Now, for instance, when I wasn't warned about symptoms of toxicity and only became aware of them later because of what CWE members were saying. Could have been averted. Doctors should have told me. Doctors should have been testing my sodium levels every six months when I was on Tegretol. Because they didn't, I ended up being ill for the greater part of a year. There are just too many instances similar to that. Doctors mess up but we suffer as a result. Doctors' failures are enormously frustrating, and it's tough to keep myself educated, even though I work very hard at it.

 

[valeriedl]

One thing that I seem to get a lot of is when I run into someone who knows I have epilepsy and they say "Do you still have that thing.... And you....?"

Unless you've honestly forgotten the words 'Epilepsy' and 'Seizure' then go ahead and use them! I know I have epilepsy and you're not going to make me mad when you ask me anything about it.