Anyone out there know how I feel?

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17withepilepsy

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I lived a normal life with no medical problems up till age 16. I used to speed skate, run track, and do normal teenager things with my friends. On december 3rd two years ago I had my first grand mal seizure. I wasn't taken to a specialist until my 5th grand mal in 3 months. The specialist that I saw without even blinking an eye told me that I had epilepsy and post concussion syndrome (from concussions suffered from hitting my head while having seizures, once on ice, and the rest from just falling). My permit was taken away, I was on sports suspension, and I wasn't allowed to go out because I have seizures so much.

I don't know anyone who has epilepsy. I have no one to talk to about it, and no one understands what I'm going though because in all honesty, I really have no idea.

I just want to know someone who has gone though this; in all honesty I feel so crappy from having this and not being able to hear it from anyone else.
 
I just wanted to wish you a warm welcome. Please know you are not alone. My Son has epilepsy; he also has tonic clonics (grand mal) seizures. Approximate 50 million people worldwide have epilepsy. You will receive good sound advice from forum seniors.
 
17withepilepsy said:
I don't know anyone who has epilepsy. I have no one to talk to about it, and no one understands what I'm going though because in all honesty, I really have no idea.
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Definately know, and don't worry you are not alone. When I was diagnosed I knew next to nothing about epilepsy and not one person with it, not even an 'acquaintance.' Even my GP at the time wasn't very familiar with it, so every conversation, etc. relied heavily on the neurologist I was referred to, who was in another city and I had to travel- lots of fun as I wasn't allowed to drive myself- and in the end he turned out to be a total A--hole who I believe, after 8 years of research, I know more about e than he does.
To be honest it will take quite a while for the shock to wear off, and having someone, anyone to talk to that gets you will help big time... so come on here as often as you need to. We all get it, been through it, the thousands of members on here combined have experienced every type of seizure there is (I'm with you - have had five grand mals myself - and it all started out of the blue as it does for many).
Ask questions, vent, cry, whatever you need, that's what this forum is for. There's various sections to go into pertaining to what you want to talk about... just post away. I know the diagnosis is devastating, but somehow it does get easier. It definately is a process so try not to put pressure on yourself to understand it all right away.
 
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hey and welcome, im 20, was diagnosed with epilepsy when i was 19 (10years after symptoms started) i have only had one grand mal though, but did have to put pretty much everything on hold, even had to drop out of college as it took them 1 year to diagnose me, trust me your not the only one, i was absolutely petrified after i gave birth to my daughter as i still wasn't diagnosed i thought i was going to twitch (one of my symptoms) and drop her or something! I felt crappy at the start too, didn't really know where life was going or what i could and couldn't do, it just takes time, look on 'the bright side' now you have been diagnosed you can start finding a way to get yourself back on track! Oh an post as much as you like on here even if you think the questions sound stupid...i Do lol! xxx
 
Hi 17withepilepsy, welcome to CWE!

You've come to the right place. CWE members have been there, done that -- we know exactly how crappy E can feel, especially when the diagnosis is still sinking in. We also can offer a lot of good info, advice and support, so I hope you feel free to post questions and comments.

It sounds like your seizures are uncontrolled at the moment. Has your neuro suggested any changes (i.e., in medication or dosage)? What med are you on now?

It might help to keep a seizure diary. In it, you note down when your seizures occur and what happens during them, as well as info about your physical, physiological, and emotional health. In this way, the diary can potentially identify seizure triggers. (Triggers can be a range of things that lower your seizure threshold and make you more vulnerable: fatigue, low blood sugar, dehydration, electrolyte imbalance, food sensitivities, hormonal fluctuations, infection/illness, etc.).

Best,
Nakamova
 
Hi , you have come to the right place to find answers to questions . I stummbled onto this site and for me its been a god send . My daughter as epilepsy , she was diagnosed in 2006 when she was 15 years old. A lot of things change, your way of life, how people react to you.
Amy got so fed up with "are you ok , how do you feel , never being left alone " . But that will change in time. There is light at the end of the tunnel . I wish you all the very best x
 
i know how u feal i was diagnosed at 16 as well never was able to get my license don't let it get u down mine are still not controlled but i feal strong and resilient even though it sucks having this not being able to do much without having one or thinkin you will and everybody around thinks it too.remember u are not alone i have had it for 14 yrs now have had my injuries dont let those things or people stop u from doin anything u want to do.-clinton
 
Today's my 2nd day on here,,,I'm a little older but I just read on here today about Diet Cokes and artificial sweetners..I had NO clue!!! So starting tomorrow I'm gonna stop all sugar free stuff for a while and see IF that has ANYthing to so with my black outs. Keep your chin up!!!

Take care,
TanyaG
 
Keep your chin up - it gets easier. I'm like you though - I don't know a single person with epilepsy to talk to. So hang in there and vent! We're here for you.
 
Hi there.. my daughter was also 14 when she had her first two seizures. It was a scary time, since I did not know anyone with a seizure disorder. We were told that since she had two seizures, it most likely would continue, and she should begin on meds to make it stop. That is where life spiraled out of control.

My daughter is a competitive figure skater. She had to stop for a while, but we decided to let her continue as it was her only passion at the time. Seriously life for her became darker and darker. We tried four meds, and I learned that after 4 the likelyhood of others working dropped dramatically. My instincts said to work on finding the cause, and I had conflicting answers from neurologists on this. They said that a birthmark on her brain was the cause... and my question was, "Why for 14 yrs was she just fine?" They didn't have an answer.

For us, the red flags became more clear that nutrition played a role. Blood sugar also has been a part of this too, so we began an elimination diet.

Her story is below in my signature. Today, she has been seizure free for over a year, she is med free for about 3-4 yrs (my record keeping is not as keen as it was for the six years I was tracking it) . She is now 20, working, going to college, progressing in the process to get her license. I know in my heart, that this would not be the case if I had followed the advice of conventional doctors. Nutrition at your age, plays a HUGE role in the health of the nervous system, and the brain.

If you have ?s don't hesitate to ask.
 
I know how you feel too. I was 19 when I started having mine. I lost my license, I couldn't work and I didn't have anyone to talk to about my worries or fears. But I've found a lot of support on sites just like this one and you can always count on people who have been through the same thing to hear just what you need. :)
 
I just want to thank you all so much. Having connection with people who are going through or know someone who is going through the same thing I am really helps a lot. I was in a really bad place with the diagnosis hanging over my head and no one to vent to about it that would really understand. But now I am doing better than I was before, I feel better and my last seizure was 2 weeks ago (which is a HUGE change from the 2-3 per week) and hopefully this new medication I'm on, which i started 3 weeks ago, will finally be the one to better control my seizures.

Thanks for all the advice, all of you have helped in more ways than you know, I really appreciate it.
 
Keep that positive attitude 17 . It will enable you to make it through the rough waters, and improve your situation. Gratitude is always beneficial.

I hope that your next two weeks remain seizure free as well. Slow and steady...
 
ditto with the welcome!
and ditto with you about feeling lost with all of this
it's a gradual process
for me since diagnosis the process has been toward getting back to be just "me" and not let epilepsy or my seizures dominate my life or define me!
you'll get a range of interaction from this forum, but for me it has all been extremely helpful, and offers a spark in an otherwise often dim circumstance
 
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