Hello from Poland

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Yuki1991

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Hello!

I'm Maja (prefer Yuki ;)) from Poland. I'm 20 years old.

Firstly- I'm sorry for any mistakes, but my English isn't good ;(

My story is really terrible... When I was 6 I suddenly lost consciousness. I was in a road to school. That was my first seizure. I didn't remember that time clearly, but I know I was in hospital, they said I have epilepsy, gave me medicines and send home. Then I was under the care of nice, old pediatric neurologist. For 3 or 4 years I had thousands of seizures and one day everything stopped. After a year of taking medicines and didn't have any seizure my doc decided to slowly discontinue medication. And when I was 13 I was medicine free ;)
But less then a year later, during English lesson, I fell down from chair with no consciousness... I was scared, but doc in hospital said that I'm ok, that was only reaction to stress, stuffy, hot, nerves and something like that...
My life was beautiful for next 2 years. Then, directly before swimming pool lesson, I lost my consciousness next time... My friend told me later that I had a convulsions and she was very scared. I didn't go to hospital because of my parents (I will explain it later). Since that time I often had headache, I frequently felt dizzy, I had problem with focusing my minds... I was a ruin of human.
3 years later (5 months before my 18 birthday and 3-4 months before my final- "mature" exam ) I didn't thing about my health. I had to learn, so I drink coffee, didn't sleep well, I was stressed and one day- it happened: I lost my consciousness one more time. Ambulance was called, but I was so busy because of exams I didn't want to go to hospital. I was scared that I will not have a chance to approach the exams... And second problem was my parents. They prefer to pick me from school not hospital...
since that I had 'seizures' once a week, sometimes one in two weeks...
After exams I go to hospital for help. My new ' for adult' neurologist said that unfortunately my epilepsy come back... One way- I was sad, another- I know what is wrong with me ;P
She decided to give mi Lamitrin. It was better ;) My seizures disappeared.
But that is not the end of my story...
9 months later my doc has an accident and she died ;(
I have new doctor. But he decided to change the diagnosis. He said to me- "I think u r not having epilepsy, bye!" And now I was left alone with no doctor and no medication. I have enough this and I decided to rest from doctors, hospitals and arguing with parents.

What my parents have for this???
As long as I live with them, I'm rely on them. They have power on me.
And I don't know why but they said to me all the time:
"You are healthy, you cannot have any problems, you have to be the best of everything, you cannot have any disease, stop thinking about it, stop 'going' to hospitals, stop fooling around, what are you thinking?- stop loosing consciousness- you could do it, just try!"

I have enough, because no one want to have disease, and they are thinking I like it. And it isn't that. I hate to wake up in ambulance, i hate needles, i hate loosing consciousness, i hate to be injured from the fall, I hate hospitals and doctors!!!

**************************

I'm sorry for so long post, but you know- now i feel better ;)
I'm very happy that I found that forum- I cannot found any Polish forum for epileptic people, so I hope here I can 'meet' new peoples with similar problems...

Greetings from Poland!
Yuki
 
Yuki1991

Sorry to hear your story and not to worry your english will get better, mine can be bad as well but this is because of my E, any way I can relate in part to your story and probaly a few others as well. you should try to move out of the house for yourself (not easy to do) but if you can, the other thing you can try is to educate your parents about epilepsy and this is not easy but try.
 
Thanks for reply!
Yeah, it isn't easy... But I hope some day I will have my own family, my own home and I will not have to hear parents and be under their power ;)
 
Yuki1991

You will have your own family some day and Home in the mean time try and keep the good side out,and be nice to the girls, I am married and have epilepsy for 40 years things are not always easy but we have try, you should read up on epilepsy its amazing how much you learn and how it helps
 
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Dzien dobry, Yuki! (or Dobry wieczor :))

Welcome to CWE.:hello: I'm so glad you found us here.

Please don't worry about your English, it's quite good:tup: I spent almost two years in Poland teaching English, and I'm sad to say that I never learned much Polish beyond the very basics. And I've forgotten most of that :oops:

I'm so sorry about all you are going through with your seizures, the doctor who won't give you the anti-seizure medicine you need, and most especially, the problems you are having with your parents. I wish I had some good advice or words of wisdom that would help, but I'm afraid I don't. I would only urge you not to give up on doctors. It sometimes takes many tries to find the right one. I went to the doctor a couple of times while I was in Poland, but I don't know how the medical system works there. Is it possible to go to a general practitioner and have him/her prescribe your medicine? I think my general practitioner is much easier to talk to than my neuro.

Take care of yourself, Yuki!

Do widzenia for now :)
 
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Hello and welcome to CWE! :)

Yuki1991 said:

And I don't know why but they said to me all the time:
"You are healthy, you cannot have any problems, you have to be the best of everything, you cannot have any disease, stop thinking about it, stop 'going' to hospitals, stop fooling around, what are you thinking?- stop loosing consciousness- you could do it, just try!"
Click to expand...

It took five years for my parents to finally accept that I wasn't acting and the seizures were real, and I couldn't control them simply by "trying"... :( That's was probably one of the worst parts for me, to be honest. Growing up in my late teens and having my parents in denial of what was happening.

I hope they come to an understanding and realize what has been going on! :)
 
Thank you for all replies!

Travel bug: unfortunately it isn't easy with doctors in Poland. Especially now, when they are during strike, and it was put a new low. Doctors don't want to write any prescriptions, because if they write something wrong they have to legally responsible of this and they are afraid...

Silat: Thanks that you write it to me! Now I know it isn't only my problem and it can be better one day! I hope it will be... 5 years it is so long but I hope I will survive it and some day it will end...
 
Yuki,

Welcome! I am sorry to hear about your parents and doctors, but at least you found us! You will find that this is a place that you can come to whenever you need to talk. We are always here for you. Hopefully your parents will start to understand what is happening with you, but if not, hang in there! You will be able to be on your own soon :)
 
Welcome Yuki1

You have found a caring and compassionate community in any language. if you have a question, ask, someone will answer.

This is a long and difficult journey that i am trying to help my daughter on. Parents can be difficult, but you should try to spend some time changing their opinion on your condition. They may realize your condition and help you.

Good luck and keep asking questions.

Tom
 
Hello and welcome!
I'm sorry to hear what you've been going through- especially with your parents not understanding.
My parents were in denial about my seizures until I was actually diagnosed. I got simple partial seizures that started when I was 12 or 13, but my parents would say, "Oh, it's nothing" or "It's just anxiety" when I would show them the right side of my body shaking. I didn't know what it was until I finally convinced my mom to take me to the doctor when I was about 14 or 15. Then I was diagnosed with Epilepsy.
anyway, I hope you get better medical care soon and that your parents will come around and realize that what you're going through is real and that you can't just make it stop. Hope to hear more from you around the forum!
 
Welcome.

I am sorry to hear everything you have gone through. My parents never understood in the begging, but i have a sister who is a nurse, she explaied what was happening to me, and what could happen at times.

I have go through 10 doctors, am srarting my 11 doctor next week. You need to be comtable with the doctor you get. They should explain to you what is going on and they should listen to you also. I have had seizures all my life ( over 50 years).

My ex did not understnad my epilepsy and finally left me. That was very hard, he had two sons from another marriage that had epilepsy, so he did know something about it. Some people can be mean if you dont teach rhem about epilepsy.
 
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