Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Ive never come to terms with my epilepsy
Tue, 07/31/2012 - 18:32Firstly, thanks for taking time to read.
Im 21 and ive been diagnosed since i was 8 years old. You would have thought that i would have been able to come to terms with it by now but i havent.
What im struggling with most is the not being able to drive. People dont understand how much it means to me and its so out of control its scaring me. My epilepsy has pretty much ruled my life, and has sent me into countless depressions, and ive lost a lot of friends over it. Ive been on every type of medication in the UK thats available to epileptics and none of them have worked. Ive been considered for surgery but i had scans and they couldnt determine where in my brain my epilepsy starts so they couldnt operate. This upset me even more.
I have grand mal and absent seizures and ive recently started randomly twitching everywhere all the time and its scaring me. Im on Sodium Valproate (epilim) and Lamotrigine and im taking 10 tablets a day and its still crazy. I dont know what to do :( It upsets me alot. I often get confused and sometimes i know what i want to say but i cant seem to put a sentence together and talk or the word will be there but my mind cant process it to come out which frustrates me.
My physician says that my epilepsy is rare in the sense that most people who are diagnosed so early grow out of it and that they havent been able to achieve full control in 13 years.
Please, if anyone can share any tips on coming to terms and dealing with epilepsy id be so grateful.
Many Thanks
Codie
Comments
Re: Ive never come to terms with my epilepsy
Submitted by L435 on Wed, 2012-08-01 - 12:18
Id never heard of this until now, thanks for bringing it to my attention. I'll defo ask my physician about it next time i see him, i go next month so i'll bring it up with him
Thankyou so much
Id never heard of this until now, thanks for bringing it to my attention. I'll defo ask my physician about it next time i see him, i go next month so i'll bring it up with him
Thankyou so much
Re: Ive never come to terms with my epilepsy
Submitted by ryansdad on Thu, 2012-08-02 - 09:08
Hi Codie,
It troubles me that you've suffered w/ epilepsy for 13 yrs and your doctor has not informed you of at least the existence of the ketogenic diet. Invented back in the 1920s, it became less known after the introduction of antiepileptic medications, but it is very effective on a portion of patients. Since meds apparently are ineffective for you, a physician should be looking for and presenting all alternatives. Please don't wait until next month to ask him. Do your own research and ask him about it as soon as you can. It saved my son.
Hi Codie,
It troubles me that you've suffered w/ epilepsy for 13 yrs and your doctor has not informed you of at least the existence of the ketogenic diet. Invented back in the 1920s, it became less known after the introduction of antiepileptic medications, but it is very effective on a portion of patients. Since meds apparently are ineffective for you, a physician should be looking for and presenting all alternatives. Please don't wait until next month to ask him. Do your own research and ask him about it as soon as you can. It saved my son.
Re: Ive never come to terms with my epilepsy
Submitted by ryansdad on Wed, 2012-08-01 - 12:15
I wasn't referring to a well-balanced diet or vitamin supplements, I was referring to the ketogenic diet. My son was diagnosed w/ intractable (difficult to treat) epilepsy at age 6. A variety of medications did not stop or improve the seizure activity. His scans, like yours, couldn't determine an origination point in his brain so surgery was not a viable option. A modified ketogenic diet has proven to be very successful for him. It took a while to get the correct formula, but he has been seizure free for 3 yrs and has a clear EEG. I strongly encourage you to ask your physician about it, and if he is not encouraging to you about it, find another physician who is. Life's too short not to try all available options.