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Brainskip

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Im kinda on the down side of things I reckon. Why does it seem that after being documented for so many thousands of years we are still shuned and pushed away by the masses? Why is it so hard to understand that we are humans too? Why, do I have to keep waking up and have to relearn everything again because it has been erased?

Why, Why? I dont even have a clue of what Im trying to say, just tired of being tired.

Hope yall are doing ok,

Brian
 
Brainskip....

Frustrating. And being tired from E doesn't help.

If you haven't already, check out this thread... Do you think there is a stigma associated with epilepsy? ...you can join in that vote, speak your piece, see what others have to say on that subject!
:rock:

In the mean time, put on some Dethklok (or whatever floats the boat at the moment!) and relax!
:tup:
 
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Thanks, as crazy as it might seem Im recovering from seizures or a cluster of grandmals from around 3 weeks or so ago. I more than likely broke a couple ribbs and messed up my back again. When I lock up I lock up, 2 times I have snapped my back in them now, from my back arching. I guess I should just be happy Im alive and can still move, its just so frustrating sometimes.

The amount of time I have lost since I have been a kid is insane. Just the last 20 years I have averaged around 1 to 4 months a year completely lost, so Im going on a year or two now that has just disappered or I was so out of it I will never remember.

Epilepsy is a thief that I would love to catch one good time and have my way with it. Acutally if I could I would take everyones siezures for them if it would mean a cure.
 
I appreciate the thought anyways!.......

If only it were THAT easy! I've come to know a few other people I believe would do the same thing....let's hope something easier surfaces.

here's hopin' you feel better soon!
:rock:
 
Hey Brian - Sorry to hear your predicament. I am looking at it from a different perspective and just can't even imagine what you go through. I thought four days lost each month to migraines was bad. My daughter is the one with seizures, and I see that it is my job to educate those around her. I don't let them shun her, I explain what is going on, to the best of my ability. Of course there are those idiots that have no compassion, but I woudln't want them around her anyways.

I do hope you are feeling better. Is it your meds that make you tired or the seizure itself?
 
Howdy and thanks yall,

When I start to seize its pertty crazy. I usually go status in my grandmals but not all the time. In the ones I do though its very brutal and can last very long periods of time, anywhere from a few minutes to as long as a hour and a half. This can go on for several days sometimes. When it does happen this way its like blinking my eyes and sometimes over a month will have passed before I snap back in, the least amount of time will be around one week. I guess its cause I will stay in a seizure state having smaller ones non stop. Once it starts Im pretty much doomed, I have had doctors in at least 2 states now tell my mom they had never seen anyone have a seizure the way I do. They will shoot me up with all the emergency meds till they have almost overdosed me and still they wont stop. They will eventually send me home and tell my mom there aint really much else they can do. I have smaller siezures on pretty much a daily basis, but they are very hard to notice unless they progress into ones where I lose awarness.

I really dont understand it all because in a way I still dont have any awarness that they happend. It very odd, I remember awhile back I helped a friend of mine move and had a bunch of seizures either right before or right after, about a month later I went to see them and knocked on the door and a totall stranger answered. I never could remember were I helped them move to. Its very difficult in the job sene too, I have gone through at least 30+ jobs now.

Another thing to is now I dont have any insurance and dont even have a doctor I can go to now. I was put on the state insurance and was on it for like 10 years then woke up with my back snapped in 4 places and shortly after getting fitted for a back brace lost it in a state wide overhaul. So its been like 6 years now since I have had insurance. The last doctors I had been seeing about killed me with starting me on Kolonipn and after keeping me on it for like 3 or 4 months cut me offf instantly, needless to say I about died in them. I went back all beat up tounge black and as soon as I walked in a different doctor talked to me and he wouldnt. Withen about 3 more visits the nurses told me to just start going to the ER and not bother coming back there. I guess they thought I would eventually sue em or something wich I wouldnt have.

I dont really know what to think about it all sometimes. I know that it is very hard on us thats for sure. I hope that your daughter finds control and that one day she is seizure free and never has to worry about it again. It is hard to relize that you have this condition, I mean it took me around 10 years before I even knew something was happening or could understand that it was anyway. When you dont remember a thing about it, its hard to belive people telling you about this or that. Plus my post ictal period is so long that most people think that telling me hundreds of times over a week or two I will remember but never do.

Im sorry about this being kinda long and if it dosnt make alot of sence sorry about that too. If ya have any questions Im always willing to try and answer but it is a very strange condition to live with.

Hope yall are doing ok and your daughter manages to beat this soon.

Brian
 
I am surprised that you are able to give a summary of your situation in such few words.

My daughter also has trouble remembering what happened before during and after her seizures. Hers are all the tonic clonic variety. I worry the most when she hits her head really hard. I am running on the theory that certain additives were bombarding her brain with toxins, and causing all sorts of malfunctions.
 
Brian -

Do you have a local Epilepsy Foundation? You should be able to find a local foundation on the National website. They should be able to help you with employers and meds. I know that our local foundation has many resources to help. After Tina's death, I became very involved in our foundation, I am a member of the Board of Directors along with spending most of my time trying to raise awareness. If you need help locating a local foundation, please let me know where you live and I will try to get you connected with them.

It's lack of education that makes people look at you differently. It's the fear of not knowing what is happening that makes people ignorant. Seizures have been seen as evil through the decades. People thought that a person having a seizure was demon possesed or that they were a witch. Seizures are not a pretty sight to witness, believe me I've seen too many of them with Tina and now Nicole.

Just remember, Van Goh had Epilepsy!!
 
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Im sorry to hear about your daughter having TC's they are so hard. I only know for the most part what people have told me except the first time I ever saw a seizure happen and as crazy as it sounds it was myself. I have always told friends and family if it happens to record it and sure enough a friend set up a tripod and video tapped me having a cluster of grandmals, the tape went on for 6 hours before it ran out. What is also a bit odd is that everyone that knows me thinks that this is just normal. I also thought it was normal but at the same time could tell that eventually they will get me because Im a fairly smart person and for me to lose a chunck of time like this it has to be bad, almost like being in a coma.

When I started to get my act together in high school even with siezures managed to get straight A's in my senior year, and a couple years ago managed to make the presidents list at the college here and maintained a 3.7 gpa till my seizures got to bad and had to take a little break. I will probably go back before to long I only have around one or two semesters to go and I can get my degree in Drafting. Its alot of hard stuff and I want to be able to comprehend what is going on.

Of course all my school is second to me now. When I did have a bunch of clusters in college I rebroke my back and since the second time of breaking it I really am more concernd with trying to get them to stop for good, or at least learning as much as I can about this evil condition that robbs me of so much time. I have learned alot though in the last 3 years. I learned that the system dosnt care if ya have insurance or not lol. I shouldnt laugh but its a way I deal with things, if ya cant laugh at yourself then its gonna be hard to laugh at anything.

Thanks for listening,

Brian
 
Im sorry to hear about Tina that is so hard. I have contacted the local foundation for TN but its kinda far away from here around 2 hours of driving. They have sent me information packs but its been a few since then too. It so hard to keep up with things in this crazy state of mind I can get into.

Thanks and sending some prayers your way and many condolances for Tina. Also Im sorry if this dosnt make alot of sence, its kinda hard for me to type then go back up re-read and start typing then have to go back and re-read. I will figure it all out soon though.

Thanks,

Brian
 
Welcome back Brian

I hear you on the frustrations of it all!

Remember what was posted on EFA
Forum ...


Epilepsy takes you for a very strange ride!

hugs.gif
 
Brian -

You are an amazing person. Have you asked your local foundation to help you with employment and meds? I know that our program director and outreach directors travel to help people. Maybe it is different in your state, but they should be willing to help you. I wish that you were here in WI so I could put you in touch with our program director.

I will keep you in my prayers.
 
Thanks Sharon and Tina's Mom, It is a very strange ride indeed. I was trying to insert a link but for some reason it looks like it doubles it or something lol. I was going to put a link in here to some pics of me after a few seizures.

In a few of the pics my tounge is soild black, this was taken the day before I went into see a doctor for Disability/SSI. My mom told me that my hands even turned black in them but I dont remember anything. Brainskip's Gallery at Epilepsy Foundation

ah ha I think i figured it out, anyway these were taken in around a 2 year period and it wasnt even all the seizures or grandmals I had during this time.
 
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For what it's worth, when Stacy (my wife) went through a period of time when she was having TC's once a week like clockwork and having atonic (drop) seizures and myoclonic jerks almost daily in between, she couldn't remember anything - including the names of our children!

Her memory returned to normal once she got the seizures under control, but it took a few months.
 
I looked at your pics and it brought back alot of memories of Tina's seizures. Tina had long fingernails and she had permanent scars in her palms from her seizures. I remember one time when she walked to my house, she never had a driver's license, with blood running down her face. She said that she thought she walked into the wall during a seizure. I also remember seeing the broken blood vessels in her eye from seizures. I always feared that something would happen and there was nothing that I could do. I always treated her as a normal adult and also let her know that I was there for her. Unfortunately, her daughter, Nicole found her the day she died. She tried to wake her up and could not. Thank goodness Tina taught her that if anything happened to go next door.

Sometimes I blame myself because I didn't know very much about Epilepsy. I never knew that people could actually die from a seizure. I know that God needed her more than me and someday I will see her again.
 
Tonic Clonics / Grand Mals are NOT funny!

Brian,

I fixed your gallery link. I had mine posted
in the gallery, but had to remove them
because of some people (not at EFA but
somewhere else) were using them to poke
fun at me.

I don't know why they think that busted
tongue split open and cracked teeth,
shattered teeth, and broken teeth are
"hilarious" from Tonic Clonics (Grand Mals).

I see nothing funny about it.

Just TRY and eat and drink .. sometimes
I WISH THEY would experience it. I had
to have sutures on one side of my tongue
once (because of my retainer shattered).

It hurts to even TALK as well, and even
though I brushed my teeth 2-3 times a day
but after those, just try to brush your teeth.
*OW* *OW* *OW*

:(

All the sides of my teeth are pretty much
shattered, busted, cracked, destroyed or
gone because of so many of them. And
Dilantin did play a role in the destruction
from being on it for so long.
 
Thanks Bernard and Im glad to hear that Stacy is doing ok.

Thanks Tina's Mom, It sends a chill down my spine to hear about Tina. I know that its got to be so hard, but remember that its not your fault. Its something that can happen to just about anyone with severe or cluster type siezures. When I was around 17 nobody told me that it was a possiblity but I had bit a friends finger about off, and when he told me that I was looking him in the eye when I did this, I just couldnt believe him for the longest time. I mean how could I look him in the eyes and not remember biting off one of his fingers.

It was only around 3 years ago that I had heard of SUDEP, but I had known that it was possible for a long time or at least thought so. Also treating her the way you did as a normal adult is a good thing. My mom does this with me, and its one of the most greatful things I could have ever asked for in life.

God bless you,

Brian
 
Thanks Sharon Im sorry to hear about someone making fun of you. Your a good person and nobody can take that from you. I understand how hard it can be and if I could find them for ya I would.

Some people out there are just plain ignorant and should have a couple teeth knocked out and maybe they would understand a little bit then. I shouldnt even say that but I understand your frustrations. I also have been out in the public eye on several occasions when I was looking pretty bad, eyes busted out, tounge black and swollen so bad you cant talk or even eat for a long time sometimes. A couple months ago I lost around 20 lbs over a 2 week period were I couldnt eat.

I hope your doing ok,

Brian
 
(((((((((( Tina's Mom ))))))))))))))

So sorry to hear about your loss of your
daughter to SUDEP. It's such a deep sorrow!
My heart goes out to you and your family.

:rose: :rose: :rose:
 
I am so grateful for these forums and the opportunity to express my frustrations. Thank you everyone for listening to me and God bless you all. Someday, there will be no more seizures, I am sure of it.
 
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