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Ive never come to terms with my epilepsy

Firstly, 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

Hello Codie, I was diagnosed with grandmal seizures at age 16, I am now 43, my diagnosis isn't as severe as yours, I did start driving at age 18, never was very open about my seizures until I started working and felt it important to tell my employers and co-workers, I did feel like an alien then. I never did tell the men I dated and when I did tell one well u can guess the rest of the story, but the man I've been married to for 17yrs took it well on our first date, I told him and his response was that's ok i'm an EMT, talk about fate.

the real reason I responded to u, is recently my seizure disorder basically took over, I totalled my new car on 6/24, and can actually say I am lucky to be typing to u, I won't be driving for a long time, I had another seizure at work last week after med changes,and I possibly lost my job or have to look for another one, I find my strength in my family and friends, as my mother said when I was 16, epilepsy is just another block in the road we have to get through, I always remember her advice in difficulty times, 26yrs epilepsy is just a diagnosis, not something that should stop your life.

Re: Ive never come to terms with my epilepsy

Hi Codie...I had my first seizure at the age of 18 months, and never had my first real seizure after that until I was 18. I would always have mini staring spells in school growing up, but nothing to the effect of passing out. When I was 18, everything started up, as to where I had 3 to maybe 4 seizures a year, and wasn't suspended from driving up until 18 months ago, when I had a horrible car accident due to a horrible seizure.
I'm 31 now, and my life is miserable. I just went out 2 months ago on permanent disability because of this. I'm getting at least two grand mal seizures a month, and the worst part is, I don't know when they're coming on. I've been on 15 different medications,(4 right now), and nothing seems to be working, so now I'm having the Vagus Nerve Stimulation operation next month, because the doctor thinks it's my last & final hope.
Until I had my car accident in 2010, I've never come to terms with my epilepsy, either, because until then, I led a mainly normal life. I was able to drive, hang out with my friends, etc...but since I lost the privilege to drive, my life has done a total 180, and I see my friends maybe once a month. My doctor told me that because of my condition, even when I get this operation done, and even if I am seizure free for at least a year, because of the fact that I don't know when my seizures are coming on, I will never be able to drive again.

Re: Ive never come to terms with my epilepsy

oh KMac8281, i know exactly how your feeling,

I dont know when my seizures are coming on either although people around me seem to know...my mum says she can see them coming hours before but she has only just started noticing it (after 13 years) and i dont live with her anymore which is great, cause i love the freedom after being wrapped up for so long but it makes me scared and anxious because of many reasons. some of the main ones are killing myself by falling down the stairs and nobody finding me or seriously injuring myself like falling onto the cooker but i know i cant live at home all my life. Ive been on every combination of drugs possible and its still not controlled so its really upsetting me. Im missing days of college and falling behind so i dont know what to do 

I hope that the VNS works for you, i wish i had that option 

xx

Re: Ive never come to terms with my epilepsy

Im so sorry you nearly lost your life :( thats so awful :( 

I know that its just a block in my life, but its something im finding hard to get around or climb over...

I
find it hard to tell people and i know that people discriminate in
work. Im 21 and ive never had a job. Its not that i dont want one, its
that i cant get one because i have no experience because nowhere will
take me on plust, i know they discriminate. Im embarassed about my
epilepsy and i know that its a part of me, and theres nothhing i can do
to change it, it still makes me feel embarassed, especially when i have
seizures in public and because i nearly always lose control of my
bladder, it makes it even more embarassing. 

I also find it hard to tell the men im dating, as i dont want them to think im weird or whatever but then on the other hand, i know if i dont tell them and have a seizure, they'll be angry that i didnt tell them.....its trying to pick the lesser of 2 evils for me :(

I honestly dont know what to do cause they cant find a medication combo for me (im taking 10 tablets a day) and my seizures are getting worse :( 

Re: Ive never come to terms with my epilepsy

Hi Codie,

Have you tried any dietary approaches? 

Re: Ive never come to terms with my epilepsy

Nope,

my physician dont think its diet based anyway, i eat a well balanced diet even though my tablets have made me put on weight so i struggle to keep myself the weight i am. I even take vitamin supplements and its not changing anything :( sometimes i dont even know why i bother with it :(

Re: Ive never come to terms with my epilepsy

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.  

Re: Ive never come to terms with my epilepsy

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

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

Hi Codie-

I was diagnosed at 18 months old.  I've been on every med possible as well.  I started on the celiac diet since that seems to help the seizures.  It does seem to help for me. 

Your twitching might be do to the valproate meds or even the lamictal.  The generics that you are taking might heve a side effect as well.  For some, taking the generic rather than the name brand, might have greater side effects. 

I have the same side effects as you.  Twitching, sentence completion, and after a seizure confusion.  those side effects seem to be due to the valproate or it could be due to both meds being together.  I'm on Depakote ER, lamictal and klonipin.

I just had the new VNS put in and my seizures seem to be better but the side effects are what bother me now.