Lune.

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lune

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I'm an 18 year-old Dutch girl, studying English Language and Culture at University. I had my first epileptic attack in Octobre 2008, just one month after I'd turned 18. I had meningitis as a baby, and that's the cause of the epilepsy. I still find it very hard to cope with, seeing as it's all very new and it's a major influence on my studies (and I've always wanted to study English, so it's really a setback), my love-life (non-existent because I'm too tired for...everything), my social life, and the way I feel in general.

I feel so alone because I know no one who has epilepsy, which is why I'm here. I read about this website in a Dutch magazine.

I love reading, writing, music, fashion, etc.


Much love, Lune.
 
Welcome Lune

It's always good to have one more. Sit down, have your complimentary cup of coffee (we have herbal & regular tea as well):cheers: and check the place out.

This is sort of a 2nd home to me, the people here are extremely supportive. I"m always surprised how many have gone through the same things I have.

Meanwhile check out the nooks and crannies & if you want to look for anything specific remember there's a "search" option at the top of the page (3rd from the left)
 
Hello Lune - Welcome to CWE
My daughter will be 18 in November, and she had her first tonic clonic seizure three years ago. We have been thrilled that we have raised her seizure threshold by changing her nutritional choices.

My daughter was told that a "birthmark" on her frontal lobe was the "cause". However, I figured she was fine for 14 years, why now. So perhaps you can consider that same theory. You were fine for 18 years. What changed in the past few years? Or what caught up with you?

Keeping the purest in nutritional choices, finding ways to reduce stress, adequate sleep, can call raise your seizure threshold. It isn't a quick fix like a drug might be, but there are only positive side effects.

My daughter also likes music and fashion. She doesn't come on this forum often ("it's my mom's support group"), but I might encourage her now that she is in a more positive frame of mind.

I am glad that you found us. You are not alone.
 
Welcome!!

Sorry to hear about your turn of events last year. I started having seizures when I was a junior (3rd year) in college (university). I was 21. Mine's genetic. It's awful when your friends are worried about being around you because they don't understand. I am many years older now. Maybe students are more educated about epilepsy. What is your experience?

I decided to write because we have many of the same interests and were about the same age of onset. I am a music teacher who likes reading and travel. Do you live in the Netherlands? I visited there many years ago.

Please let me know how you are doing. This is a very helpful site. Check out the picture albums of Crazy Monkey. They're great. She travels the world.
 
Thank you for the kind responses :)

Yes, the magazine I'm referring to has an article on Joni in it. My neurologist and psychologist/social worker are in the same building (a beautiful old house situated in Utrecht city) and there's all kinds of things to read there. I've learnt - for example - that alcohol isn't as much as a taboo I thought it was. And that the fact that I'm eating very healthy (vegetarian, I eat lots of fruits and tons of vegetables) contributes to less attacks.

@RobinN: Thank you for your advice! Nothing much changed, it isn't that it came suddenly without any reason. The doctor told me that it was probably because the meningitis left scar-tissue on my brain. Because I'd turned 18 my brain reached a reasonable size and my scar-tissue hadn't grown along. It's strange to hear that something so far in your past can have such an influence later on.


Thank you everyone. <3



p.s. Snowman, I do live in the Netherlands indeed. I live in Utrecht.
 
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lune said:
Thank you for the kind responses :)

Yes, the magazine I'm referring to has an article on Joni in it. My neurologist and psychologist/social worker are in the same building (a beautiful old house situated in Utrecht city) and there's all kinds of things to read there.
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Hi Lune,

Welcome here from another Dutch member. I do live in Dordrecht (near by Rotterdam) but I do know Utrecht, I even had some colleges at the Uithof years ago when I was a student (Leiden University, I did Communications, Dutch language and literature).

My 10-year old (will be in two days) son is being treated in the Sophia Childrens Hospital R'dam. In the WKZ Utrecht I do know the (terrific!)ketogenic dietist and prof. Van Nieuwenhuizen, the child neurologist who is specialized in the ketogenic diet.

Your remark makes me very curious about this magazine you've read my son's story in. I would like to know what the name of the magazine is. Was the article about his diet?
I don't think it's the magazine Bernard was refering to because that one is an internal publication from Gemiva, the special needs organisation behind my son's daycare centre, this magazine is only send to people involved with Gemiva. It was just released this month.

Maybe you've read about my son in an (older) magazine published by EVN or NEF? Anyway, CWE was never mentioned in a Dutch article about my son, that's for sure.

Maybe I can be of any help to you in Dutch epilepsy-land, I'm in there for over eight years now. You can PM me in Dutch if you like.

Groetjes,
 
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lune said:


@RobinN: Thank you for your advice! Nothing much changed, it isn't that it came suddenly without any reason. The doctor told me that it was probably because the meningitis left scar-tissue on my brain. Because I'd turned 18 my brain reached a reasonable size and my scar-tissue hadn't grown along. It's strange to hear that something so far in your past can have such an influence later on.
Thank you everyone. <3
Click to expand...

Please understand that we were told that Rebecca's was due to an abnormality that occurred during pregnancy. It is call heterotopia. Yet even with that diagnosis, and "birthmark", we have been able to raise her threshold to the point where she is not having seizures. She is also med free. People have reported that they have become seizure free, and med free even after brain damage. The brain can learn to function around damaged areas. Neurofeedback is being used to train the brain to do this. So just because your doctor is saying it is a done deal, there is enough evidence to show that there is hope for a seizure free life. Your doctor says that "it is probably due to scar tissue". Has he does specific testing to prove that this is so. And... do those tests show that the seizures are beginning at that scar tissue. Many doctors make educated guesses, and because they are wearing a white coat, we tend to believe them.

It isn't so strange to think that your present can have such an influence on your future.

** I also just caught your comment where you say "nothing much has changed". It doesn't have to be much, it can slowly creep up on you. Can't say it was much for my daughter. But I look back and can point a finger to a lot of reasons her threshold was lowered.
 
Thank you for telling me that, sincerely. I'm just looking for hope, and your message does spark some of it within me.

I guess one big thing has changed about my life, and that is that a long period of unhappiness and grief came to a sudden halt when I'd started studying English - which has always been my dream. Of course, there were still problems, but much of it seemed unimportant compared to my recent triumph. Then there was the first attack of which I know nothing, and now I'm confronting my fears and feelings with a social worker at my side, who is a very smart man. He guides me every step of the way and the more I talk to him, the less hefty my emotions, and the less stressed I get, and as such the less attacks I get. I'll never forget what he's done for me - even if he is merely doing his job.

I feel that it is important that there are people who we can reach out to that understand, because the problem is that most do not know very much about epilepsy. Not knowing about it makes them think that it's something mystically dangerous - or so they've told me. I hate the feeling that I have no one to reach out to.

Or at least, that I hadn't.


Mums in this board: I see my own mother cope with this, and I must say I admire you all. Seeing your daughter or son going through something you can't influence/change must be very difficult.


Much love,
Lune.
 
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