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Old 05-11-2011, 06:52 PM
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When you first told someone you had epilepsy, what did they do?


When you told a relative, friend or lover, that you had epilepsy, how did they react?

Were they curious, scared, nonplussed, accepting or in denial? Did they stick around or head for the hills? Did they ridicule you or want to know more? "How can I help you...what is it like...how does it feel?"

I can't say my early experiences were very positive. My parents were repelled and never said the "e" word. They treated me like a pariah and assured me that I would never amount to anything

But what was it like for you?
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Old 05-11-2011, 07:30 PM
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My family all found out at the same time because I was admited into the hospital. They were all worried about me. When I came out of the hospital basically I was treated like a kid. No one wanted me to be alone because I may have a seizure and be by myself. My family sort of knew what it was like when I had one because they were usually there to see me have it. They knew more what it was like than I did because I black out when having one.

My friends were worried about me too because I don't know when one is coming on. They wanted to know what it was like when I had one and I tried to explain it as best as I could.

When I went out on my first date with my husband (about 7 years ago) he knew I had epilepsy. My dad sat down with him and told him what to do if I were to have one while we were out.

On that first date I let him know that I probably wasn't going to beable to have childern, he told me that was fine because he had a son that is 16 and really didn't want any more.

I told him I couldn't drive and didn't know if I was ever going to beable to and also that I didn't have a job and wasn't sure if I would be able to work either.

I made sure I told him all the little things that you would want to be in a relationship on our first date that way if I wasn't the woman he was looking for then we wouldn't be wasting our time with each other.

A little over a month after we started dating I had my first seizure when I was with him. He got scared and called my parents wondering what to do. My dad told him and said if I didn't come out of it in about 10 minutes to call him back. I didn't come out of it so he took me to the ER.

My mom started crying in the ER waiting room while she was sitting with him because she thought for sure that he was going to be gone. He said he wasn't going anywhere because I was a great person and he wasn't leaving.

He's asked me what it's like when I'm having one, but I usually ask him what I'm like while I'm having it, as I said I black out and don't know what's going on. He'll even know when one is coming on too. I really don't get an aura but I must get some kind of look because he'll tell me to sit down because I'm going to have a seizre. 9 times out of 10 he's right.

He's been around for about 6 years now and I know he's not going anywhere.
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Old 05-11-2011, 07:54 PM
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My dating experiences were usually a disaster.

But one night, I was sitting at a new friend's house and I started having a seizure. (Lots of stress from starting a new job and he was the first friend I made.)

He said, "That's ok, I have a friend who has epilepsy. What can I do to make you feel more comfortable." (I couldn't believe it.)

When I came to, there was a blanket over me and he was sitting right beside me. That was 32 years ago!!!
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Old 05-12-2011, 06:31 AM
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everyone found out at the same time, including me! I had no idea that I was having seizures at all. My husband just thought that I was having muscle jerks because of other problems that I was having at the time. My memory started to really go down hill fast, so we went to see the doctor. He scheduled me for an eeg, and low and behold, it showed seizure activity! What a surprise!

I have had several different drug cocktails, but am told that mine will be intractable. Yay! No one that I know has had any adverse reactions to it. All have been either worried or concerned. I have to remind my husband sometimes that I am not sick! It is just a little something extra about me for him to love
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Old 05-12-2011, 11:10 AM
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My friend actually laughed saying im bullshitting him.The thing is that my epilepsy altough myoclonic never were very severe so he never saw anything and thought i was making this up or its all in my head.Actually he did see something but never accured to him its epilepsy and he probebly thought that epilepsy its always grand mals or something.

Anyway most people don't know nothing since im ordinary most of the time even when not on medication.i have juvenile myoclonic epilepsy but it works more like mild photosensetive epilepsy and nothing more
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Old 05-12-2011, 01:38 PM
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My family was startled, and a little scared, i believe, only because we have my twin who is 'autistic' and we all take care of her. My boyfriend at the time was understanding, but at my old job, my Manager was an a** about it. But others that I've told are more curious if anything because when they hear 'seizures' they automatically think of the Grand Mal type and don't know of the other types of seizures.
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Old 05-13-2011, 07:50 AM
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Well, my family didnt and to be honest still havent quite grasped the E word.... most of my friends are very very good about it. I have a Diabetic friend who knows what its like answering everyones questions. She is deffinatly someone I vent to!!

There are always a select few people who let the side down and this came in the form of my ex-boyfriend. Yes I know of all the people! He told me I was faking for attention. :/ That really hurt when he said that... I was having every test under the sun done when I was first diagnosed including blood tests and one day I went into school late after having a blood test and he went "you didnt have a blood test where is the plaster to prove it?!" I took it off because they irritate my skin... needless to say we broke up!
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Old 05-13-2011, 08:05 AM
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I have had some people who are complete idiots. I've been told before that i don't "look" like someone who has epilepsy, or "Oh, you seemed normal enough to me!"

Other people have been great. I have to explain to every new member of staff i work with so they would be prepared if anything did happen (there tends to be only two of us on shift at a time). Most have have been good, asked a few questions etc.

Edit - Stephanie - i also have a friend with diabetes who needs to inject four times a day. I've known her for about ten years and i only found out a couple of years ago. She said she never tells anyone cos they look at her differently and are always watching for the slightest sign of a hypo. I told her that i was surprised she'd think i wouldn't understand, considering everyone's eyes seem to be on me a lot too lol. We had a bit of a laugh at it afterwards.
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Old 05-13-2011, 03:02 PM
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A surprising number of people who know me don't know I have epilepsy

But lately the response has been more of how bout that, what kind of seizures
,or I never would have guessed.
because I have run into 4-5 other people who have seizures to.

Most people who know me think I live a little full tilt.
One group found out I had a seizure at my coffee shop of choice
after I was riding one of my bicycles up to the shop to sell the bike,
was late because I has a grand mal, laid in the ditch peed myself.
turned down a ambulance to the hospital. The coffee shop is a few feet below the highest point in town. I rode the rest of the way to the coffee shop. Sold the bike. Got a ride home changed clothed and washed off. (Stopped and played video games with a friend and to catch up on local news)
And went to my favorite bar on a different bike to meet my gf once she got off work.

Last edited by C0urt; 05-13-2011 at 03:06 PM.
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Old 05-13-2011, 03:21 PM
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My last bike ride was straight into the trunk of a tree. Wham! Bam! Unconscious ma'am!
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Old 05-13-2011, 04:26 PM
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i have hit my fair share of stuff, but I decided a long time ago, I have places of be.

my girlfriends favorite was me hitting a police car at around 25 mile per around going down hill, and almost tearing his door off. He open his door in front in of me after I hit it, I then had a seizure and then freaked him out. Luckily I was ok.
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Old 05-13-2011, 05:45 PM
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Ahhh. But the question is: Did he know anything about seizures?

I was appalled to find out at a local health & wellness fair that neither the police seargent present, not the fire chief had a clue about seizure first aid.

To their credit, they grabbed up my EFA info and brochures and said they would have a meeting with their staff to discuss and instruct.

Where there's life, there's hope.
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Old 05-13-2011, 07:00 PM
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the local police here know nothing about epilepsy, which is sad, this is the largest city in the state.

I do have to remain constantly aware of my appearance, so the officers so the don't think I am a drunk homeless person with a bike. when i have a seizure. Appearance make the difference for everything. But these are the same police who have stopped me when I was kit to ask me If i stole the bicycle

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Old 05-14-2011, 12:34 AM
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When the police came, and I was on the side of the road, I thought I was going to be arrested! They were yelling at me, asking if I had been drinking, or have pot in the car. I had been going in and out for 25 minutes, and was slow to answer them, slurring my words, and could not answer all their questions. That is how I found out about these episodes I was having, was seizures. Took 3 1/2 years, and went to several doctors. They finally decided to call paramedics, after my eyes rolled back in my head. I don't remember a lot about the whole day, but I refused medical attention, and signed the form. I do not remember any of that. First of all-give me a break, I was on my way to work,dressed up, and did not look like I just rolled out of a bar! Second I can smell a beer on my husbands breath at 10 ft!, and pot is just as strong. It scares me to think they had no clue what was happening to me, and the paramedics just drove of and left me. It seems that if I could not answer basic questions, that they would have taken me to the E.R. I for whatever reason was somewhat combative, and refused to go when my family tried to take me. That scares me too, but at the time I had no idea I was having seizures, and did not know that it was dangerous to keep having them for that long. I came home and slept for 20 hours.
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Old 05-14-2011, 12:46 AM
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one of our favorite times.
two friends of mine were taking me home because I was having seizures, we were all of different races. I am in the back seat having a seizure.
The cop pulls him to the side to ask him if he felt safe and if I was kidnapping him.

I have since moved from that part of town.

Last edited by C0urt; 05-14-2011 at 12:49 AM.
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Old 05-14-2011, 12:50 AM
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Very nice. I think maybe law enforcement need to be educated. I did read something about a guy getting zapped, by the police, because they thought he was not listening to them, but really he was having a seizure. This kind of stuff scares me. What if they shoot somebody, when they should be getting them help?
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Old 05-14-2011, 07:43 AM
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This letter might interest you...

Senior Advisor David Axelrod
1600 Pennsylvania Ave., NW
Washington, DC 20500

Dear Senior Advisor Axelrod:

Re: Epilepsy Abuse and Civil Rights

I'm sure you're aware of the incident when Supreme Court Justice Clarence Thomas's nephew was beaten by hospital security in La. while in the throes of a seizure.

Then there's the Pennsylvania woman who was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.

There are hundreds of stories like these in news reports and the media. That, I suppose is good for public awareness. But it's horrific for the patients' who are being abused and denied of their civil rights.

Is there no education program about how to recognize the signs of epilepsy for police, first responders and hospital security personnel?

Is there no protocol? It is not part of their job eligibility, training or internships. Not only is that a gross oversight, but it can prove fatal for those who suffer from epilepsy.

We do not need any more lawsuits...we do not want any deaths...all we want is a dose of humanity and our American civil rights.

Please advise.

Respectfully,
Phylis Feiner Johnson
pfj@pfjohnson.com
www.epilepsytalk.com
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Old 05-14-2011, 11:38 AM
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Hi, Court! Whoa! You DO live full tilt! :-)
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Old 05-14-2011, 11:54 AM
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Hi, Phyllis! Thank you for the interesting post. When I was first diagnosed, only my family knew, and they kept it "hush-hush". Mom & I went to S. Korea to visit relatives, I had a seizure in front of my eldest paternal uncle & he told my mom that I "must be a burden". Well, I'm not. I have a very close-knit circle of friends, I told them & they fully accepted it. I had a seizure @ work while talking with a teacher who didn't know I had epilepsy. I was sent home, but returned the next day. I apologized & she told me it startled her, but she was relieved to know I was okay. She asked me, "What do I do when I sense you are having a seizure?" I told her, "just let me go, but if I start walking toward desks, move them out of the way so I don't trip & fall." She said, "Okay." So, the people I've told have been very accepting. The aspect of epilepsy I've had difficulty accepting is not being able to drive. In fact, I had a dream that I was a "Professional driver on closed course" in a commercial. I was driving either a sport style Caddy or a full-tilt, bad-ass, BMW.
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Old 05-14-2011, 11:57 AM
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Originally Posted by C0urt View Post:
the local police here know nothing about epilepsy, which is sad,
This is why I took it upon myself to go to the local police and tell them about my seizures and educate them in case it happens in their jurisdiction. We are the ones who need to educate, since we are the ones with experience.

And I have also been told numerous times that "I look 'normal" after I inform others of my epilepsy, or "you don't look like you have epilepsy". What in the world is normal and what does normal look like? What do looks have to do with it?
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