New. Don't really know what to say...

[eminempink]

Hi Everyone,

I have tried one of these epilepsy sites before but didn't bother staying on it as i found it difficult to talk about epilepsy and i still do... So this is pretty hard for me and i am not sure if i was right to sign up to this website.

Okay, Well, i am an 18 year old girl, studying psychology, photography and Spanish in college, and i live in the UK.

On Christmas day 2009 (25th December), out of the blue i had a tonic colonic seizure in front of my mum and my two younger siblings (aged 5 and 3 - at the time). I spent the whole day in hospital and was very upset that i 'missed' Christmas.

-For 9 months prior to this seizure i was getting myoclonic jerks in both my arms (but mainly my left arm). When these "jerks" happened pretty much every day for 9 months before xmas day 2009, i didn't think nothing of it; so i didn't tell anyone. Also i didn't know what they were at the time, so i didn't bother looking into it.

Moving on, in January 2010 i had more jerks so i went back to A & E. I then spent three days in hospital and then got diagnosed with epilepsy, before i left they classified the epilepsy as juvenile myoclonic epilepsy; also a very mild case of epilepsy. At this time in my life i was in school (a sixth form college, I was 16 years old) and i was studying psychology and applied science (i wasn't to keen on science), but anyways i loved and still do love psychology very much. So in Jan 2010 when i was dropped with this bomb shell (JME!!!), i tried my very best to not be bothered by it. Psychology, studying was the most important thing to me.

I was put on Keppra, I didn't want to take it but i did because i was scared i would have another seizure (which i did anyways), Keppra didn't work out too well for me i fell into a slight depression and attempted suicide (partly becoz i wanted to die, partly becoz of the epilepsy and partly to do with the friends i had and boyfriend i had at the time).

I was then put on Lamotrogine, which made the jerks worse so i was put on clobazam as well.... which didn't really help so i was taken off clobazam and put on clonazapan (I know confusing so many names! :s). Okay at some point i know i was on lamotrogine and clonazapan only. I went on holiday with my family that summer and the jerks just got worse. (July 2010 - September 2010).

Back to the story...(in order). I then had another seizure on mother's day in March 2010. Still i tried my best to let my mum deal with it and i was just so determined to be in school and to finish school (which i 'half' did), i completed my 1st year but dropped out in my second year. In between Easter was my 3rd seizure in April 2010. 4th, May 24th 2010. 5th and final one, 12th July 2010; i haven't had a seizure since the 12th of July 2010. WHAT'S WRONG WITH ME!? 15 months and i cannot accept let go and move on!?

In September 2010 I was weened off Lamotrogine at the same time as being introduced to Epilim/Sodium Valporate.

By January 2011 I was on only Sodium Valporate, I am still on that now. Medically it is working just fine (brilliant in fact), also i don't seem to be affected by any weird side effects. Which is always a good thing...

Since all of this kicked off my life spiraled downhill pretty fast... And i just don't know what to do anymore!

Okay that's a lie, i need to shake off this depression and accept the fact that i, me, "Rebekkah" has Epilepsy. But for some reason, almost 2 years down the line and i cannot say that (out loud), i cannot say; "I HAVE EPILEPSY, but it's okay..."

I just want to wake up, grow up and accept who i am and love me again.

Thank you for reading...

 

[jyearta]

Hi eminempink,

I want to say Hello and welcome.

I think you will find this forum to be helpful and you will find support and information that will help you.

I know it's hard to hear and even harder to except beening diagnosed with E. But there is life after being told you have E.

I wish I could tell you that it is going to be easy.

I don't want to tell you how you will feel about this, I can only speak for myself.

It sounds like you have a good Dr. and a family that is supportive.

You might want to keep a seizure dairy. That really is a great help in recalling dates and infor. for your Dr. and for yourself.

I encourage to go into the other parts of this forum. I have learned a lot here.

Keep us posted on how you are doing.
jyearta

 

[Nakamova]

Hi eminempink, welcome to CWE!

You've been through a familiar journey for folks with seizure disorders -- dealing with the seizures, and then dealing with the meds and their side effects. (BTW, your issues with depression were very likely caused or exacerbated by the Keppra). All of this takes physical and emotional energy, so actually accepting the epilepsy may not have felt like a priority until now, when you're relatively stable.

It might help to figure out what about the epilepsy label is most distressing to you. Is it the [potential] stigma? The fear of having a seizure? Worries about falling behind? It might help to talk to a counselor or therapist about some of these issues.

Additionally, you might benefit by getting involved in activities -- travel, volunteering, taking up a new hobby or sport, etc. -- with an eye towards to distracting yourself and emphasizing the aspects of you that have nothing to do with epilepsy. Epilepsy is a only a tiny part of who you are! Right now, at 18 years of age, the past few years loom large emotionally. Soon they won't -- trust me!

If it helps, substitute "seizure disorder" for the word "epilepsy" when you think or talk about it. Consider your seizure disorder as something like asthma, or allergies -- annoying, chronic, but really nothing to do with eminempink the student/photographer/Spanish speaker.

Finally, simply venting about your worries and fears can be very therapeutic. CWE can be a great place to do so when the need arises.

Best,
Nakamova

 

[BlueSkies2220]

Hi there, welcome to the forums!
You'll find that many of us have struggled in one way or another in accepting Epilepsy into our lives; that we have struggled in having to take medicine or having to deal with the side effects; we have struggled with relationships with others who don't understand what epilepsy is..

...and right there is the key..Education about your condition, whatever it may be, is a good step towards taking control of your life and making your condition a PART of your life..instead of living in fear and letting it control you and loom large over you as if you don't have a choice.

You will find a lot of help and support here and you are welcome to stay.

 

[eminempink]

Thank you everyone for your comments they have been helpful and have encouraged me to stay on the site.
I will have a little look around and see how to work it properly.

Thanks!
EminemPink.