[GreenMan]

So I Meet people all the time that surprise me by saying that they know, or mostly used to know, someone with epilepsy.
However, I havent ever met anyone who shares my condition. Im wondering where you all at? In hiding?
Epilepsy is usually listed as fourth or so in the major illness category, but I mostly run into everyone with chronic pain. Even last year I used to run into more Aids and Cancer patients, and I know they're still around. (Im not being fatalistic, believe me.)
So, where are you all at?

[oRANGEgumby]

Got one here.....

[BLUNTMAN2000]

I know of a few people that have epilptsy.

[GreenMan]

National Epilepsy Day: 21 June 2007

SOURCE: Ministry of Health (Provincial Government of the Western Cape)
Media Statement by Minister Pierre Uys

"Epilepsy is the most common neurological disorder, affects one in every 100 people in the Third World, and can occur in anyone from any social background and at any age. However, 75% of people with epilepsy have their first seizure before the age of twenty," Minister Uys said.

Minister Uys stressed the fact that epilepsy affects people of all levels of intelligence and social backgrounds. "It is sad that people with epilepsy are sometimes excluded from society due to ignorance. These are normal people going about their daily lives who could be absorbed into mainstream society when given the necessary support," Uys said.

What is epilepsy? It is a disorder of the nervous system causing mild or severe convulsions, sometimes with loss of consciousness. Medical scientists could not yet establish the actual causes of the disorder.

The good news is that 80% of all people with epilepsy can control their condition with medication. "If you have a child with epilepsy there is a very good chance that he or she will outgrow it," said Uys.

Our hospitals, community health centres and clinics are all well equipped to deal with epilepsy, and stock the necessary anti-epileptic drugs. These drugs have to be prescribed by a doctor as epilepsy can lead to several types of seizures. It is important that parents are aware of the type of epilepsy from which their child is suffering. Observing a seizure in a child, and accurately describing this to a doctor is important for correct diagnosis. One cannot rely on the person who has suffered the seizure to remember it.

Children should be encouraged to interact with others who do not have epilepsy. At the same time, children and parents should adopt positive attitudes about epilepsy, as emphasised by this year's theme for National Epilepsy Day, "Turning obstacles into true potential". Epilepsy is often more of a nuisance than a dominating occurrence. People with epilepsy are able to function normally in practically any work situation. "Accept the limitations associated with epilepsy, but still live life to the full " Uys said.
"Epilepsy need not disqualify anyone from making a contribution to society. It is my wish that National Epilepsy Day will raise a greater awareness and help remove the unwarranted stigma attached to this condition," Uys said.




Nice to hear from you guys ... Keep it comin!

[Ah Tzul]

A recent head injury gave me my first seizure, and my first endo-DMT experience. I'm meeting with a neurologist soon for a better pic of my noggin and some post injury follow up. It's a little relieving to know that the medicine i use for pain and insomnia can carry over to other medical needs i have. one stop shopping is cool if it's not walmart.

[RottenDawg]

Originally Posted by GreenMan

So I Meet people all the time that surprise me by saying that they know, or mostly used to know, someone with epilepsy.
However, I havent ever met anyone who shares my condition. Im wondering where you all at? In hiding?
Epilepsy is usually listed as fourth or so in the major illness category, but I mostly run into everyone with chronic pain. Even last year I used to run into more Aids and Cancer patients, and I know they're still around. (Im not being fatalistic, believe me.)
So, where are you all at?

You are not alone my friend :smile2: "However, 75% of people with epilepsy have their first seizure before the age of twenty." I was 26 when I had my first seizure. Head injury from a MAJOR motorcycle accident at 19. But I must say, a small price to pay for the mistake a made. Still alive and kick'n with all faculties in order and limbs in mostly good working condition. Thank the lord ................RD

yep me too,,, good thread,,, read in merced illiad book on shamanism and world culture's , that the one's with the seziures were singled out as spirtually
gifted and taken by the shaman or priestest, elder,and inisiated in special pratices. Pretty amazing really,,,kind of like getting hit with lightining,,
same affect,,, ZAP,, cool that it stops at some point too if it's that kind, but there are so many reasons why it can happen,,causes,,, that is,,,,, cool to
study ,,, understand helps,,,,,,
peace
one

Hey, one more Elpileptic here!! i would feel left out if i didnt stand right up and say it. i was diagnosed at 21. No injury or anything, just outta tha blue. But i'll tell you, Stress is a bitch when it comes to my personal "kind" of epilepsy, i just got out of the ER about an hour ago, i've had probably 15 "cluster seizures" today. The docs say its anxiety related, but still get more EEG's tomorrow anyway YAY!!

[dofeman11]

me to...i fell off a chair and hit my head on tile when i was 12 and had a siezure.....10 yrs later im sitting on my couch playing video games and bam...siezure....i guess the light triggured it..ive only had the 2....i was diagnosed with a very mild form of epilepsy....

[RottenDawg]

Originally Posted by Lana Lane

Hey, one more Elpileptic here!! i would feel left out if i didnt stand right up and say it. i was diagnosed at 21. No injury or anything, just outta tha blue. But i'll tell you, Stress is a bitch when it comes to my personal "kind" of epilepsy, i just got out of the ER about an hour ago, i've had probably 15 "cluster seizures" today. The docs say its anxiety related, but still get more EEG's tomorrow anyway YAY!!

God bless you Lana. Hope everything works out for the best. Our hearts are always with you............RD

[RottenDawg]

Originally Posted by Lana Lane

Hey, one more Elpileptic here!! i would feel left out if i didnt stand right up and say it. i was diagnosed at 21. No injury or anything, just outta tha blue. But i'll tell you, Stress is a bitch when it comes to my personal "kind" of epilepsy, i just got out of the ER about an hour ago, i've had probably 15 "cluster seizures" today. The docs say its anxiety related, but still get more EEG's tomorrow anyway YAY!!

Hey Lana, was that you I met at Medi-Mar yesterday?..................RD

Originally Posted by Lana Lane

Hey, one more Elpileptic here!! i would feel left out if i didnt stand right up and say it. i was diagnosed at 21. No injury or anything, just outta tha blue. But i'll tell you, Stress is a bitch when it comes to my personal "kind" of epilepsy, i just got out of the ER about an hour ago, i've had probably 15 "cluster seizures" today. The docs say its anxiety related, but still get more EEG's tomorrow anyway YAY!!

been gone for a bit, sorry to hear that, hope all is better by now,, and you are feeling better,,,
peace and healing now,,,
eagles

Originally Posted by RottenDawg

Hey Lana, was that you I met at Medi-Mar yesterday?..................RD

yes, t'was! was nice to meet you!!!

[RottenDawg]

Originally Posted by Lana Lane

yes, t'was! was nice to meet you!!!

The pleasure was all mine! Hope to see you soon Lana. ...................RD

[HappaGuy]

Originally Posted by GreenMan

So I Meet people all the time that surprise me by saying that they know, or mostly used to know, someone with epilepsy.
However, I havent ever met anyone who shares my condition. Im wondering where you all at? In hiding?
Epilepsy is usually listed as fourth or so in the major illness category, but I mostly run into everyone with chronic pain. Even last year I used to run into more Aids and Cancer patients, and I know they're still around. (Im not being fatalistic, believe me.)
So, where are you all at?

Yow. Temporal Lobe Epilepsy, Complex Partial Seizures, still not fully under control.

Seems I got it bumping my head in a bike-auto accident at age 5.
I wanted to try pot before ever I'd seen it. Sensed somehow it would help. No such interest drugs except that suggested by the fact that if They said pot was bad and yet it was very very good, then I should find out what else They've lied to me about.

Got diagnosed in April 2006 when I happened to have a seizure during an EEG.
There are no clear outward symptoms of this type of seizure (beside hallucinated smells I now know are called 'auras'), and I am not aware of them, except for feeling rotten and getting headaches, and chronic intractable insomnia that clears up with anti-seizure medication. But it has certainly cut into life's possibilities. Abandoned an international business career and the love of my life eleven years ago because the symptoms were getting worse but I had no idea what was going on, but that it was bad and that I had a long lonely road ahead to get on top of it, if that was in the cards. For years my family and friends and doctors alike all presumed by appearances that I was a malingering hypochondriac scamming for attention. A very sad turn of fate. Bitter irony. I'd achieved quite a career before my nervous system finally broke down from the insomnia. Not the sort of work you find malingerers at, and I'd never been very interested in the attention of doctors.

Ganja made it endurable since I was a teen. I had no idea it was a great anti-seizure med until I looked it up after that EEG last year.
This life is so impossibly improbable that ya just gotta be grateful for whatever you got left. 'Let your attitude of gratitude carry you through!'

Bless you all.
-------
"...dammit, be kind..." -Kurt Vonnegut

Here is an interesting video about someone that is using MMJ to treat her epilepsy.

[firemonkey]

That makes me cry. It's so beautiful she has found her relief.

[cybert]

last time i had a seizure it took 8 staples to close my scalp!
Worry not, you are not alone. The reason that it might seem
that there are very few people with this condition is that it is
a situation that is easy to control with meds. There are many
more people out there than you might think. When I take my Rx-
Dilantin, it raises the thresh-hold level of the brain to have a
seizure and thus I have no problem whatsoever- you would never
know. Then with the addition of MMJ, it further controls and in a way
enhances the prevention of seizures! --- How wonderful...

[GreenMan]

Thank YOU VERY much Head collector!!!! I have been wanting to see what I look like during a seizure. I showed a bunch of my friends that have seen me have an episode, they all said I look just like that. I usually dont hit people though.
Thanks you again.

[ladyknight]

Hi

Epileptic here. I have had Epilepsy since I was 18. Mother also had it. I have 2 types, Grand Mal and Myoclonic. I am on 3 different types of meds. The epilepsy was under control for several years and then I had a breakout this January due to menopause. I ended up in the ICU with a head injury on right side and a Subdural hematoma on the right side of my head. I was lucky, no surgery needed. Brain was only bruised. ( I could have told them that, lol.)

Everything seems to be under control right now and I am also looking for what is right for me. I am keeping a journal so I will know what to use and what not to use.

One major problem for me is the fatigue due to all the meds. I need a happy medium and I will find it :)

Thank you for the post. This helps us all!

ladyknight

[sho-gun]

hi - Iam glad to see that I am not alone! I too have a seixure disorder, and i have a question to my freinds here on this thread - i often have a seixure like exprience w/ some baked goods - which has scared me away from exploring.It seems that the hashs really help me if I catch my warning signs but i wish i could enjoy baked goodies, in part becuase i love food but..... can anyone educate me as to why i may be having this exprience? thanks so much

[GreenMan]

Sho-gun,
Can you elaborate a little bit more? I dont want to pry anymore than you want to give info. But, Im not sure what you mean by 'seizure-like experience'? Are you having a dazed, petit mal episode? Or are you actually going unconscious and having convulsions (grand mal)? Either way, I would go back/call the co-op and ask where they got the edibles. Maybe they can tell you more about them and what is in them, ie ingredients? Then, are you allergic to any foods? Just throwing that out there, maybe this is a reaction? I am only guessing. Let us know what happens, I dont want you to have seizures from meds when you are trying to control them!

[shecky7]

Hey, I don't have epilepsy, but live with a room-mate who had a frontal
craniotomy. Experimental epilepsy surgery. I am driving him to get
his rec. this week. I always tell him about the epilepsy posts I read
on WT and I hope I can get him to sign up, its hard for him to focus
on reading and such. With state Disability its impossible to afford
meds so he works, but I help out with meds when I can, I did a three
week donation of meds so he could save for a recomendation fee. So, just want to give the love out to the folks with epilepsy. Stay strong!

[HappaGuy]

Originally Posted by sho-gun

hi - Iam glad to see that I am not alone! I too have a seixure disorder, and i have a question to my freinds here on this thread - i often have a seixure like exprience w/ some baked goods - which has scared me away from exploring.It seems that the hashs really help me if I catch my warning signs but i wish i could enjoy baked goodies, in part becuase i love food but..... can anyone educate me as to why i may be having this exprience? thanks so much

I think we'd all like to help but we need to know more about what you mean by 'seizure-like experience w/ some baked goods.'

Kind of surprising. I wonder in particular why you think it's the baked goods.

[HappaGuy]

Originally Posted by shecky7

Hey, I don't have epilepsy, but live with a room-mate who had a frontal
craniotomy. Experimental epilepsy surgery. I am driving him to get
his rec. this week. I always tell him about the epilepsy posts I read
on WT and I hope I can get him to sign up, its hard for him to focus
on reading and such. With state Disability its impossible to afford
meds so he works, but I help out with meds when I can, I did a three
week donation of meds so he could save for a recomendation fee. So, just want to give the love out to the folks with epilepsy. Stay strong!

How does he work, what work does he do, when "it's hard for him to focus on reading and such"?

Does he have status epilepticus? Is he always in seizure?

I'm looking for work alternatives/supplements myself. Epilepsy reduces one's options.