I’m not going to grow out of my epilepsy; it’s a harsh truth that even now, almost seven years since my diagnosis I find difficult to come to terms with. The fact that some people grow out of their epilepsy is something I find a lot of people have heard, and so I am asked quite often “will you grow out of it?” or even “but you’ll grow out of it” to which I have to explain that although you can grow out of it, I won’t.
Juvenile Myoclonic Epilepsy (the type I have) is the easiest type of epilepsy to control but it also comes with the burden of being a lifelong condition, so although I will hopefully reach a point where I am completely seizure free, I will never reach the epilepsy free point that some people are lucky enough to manage.
In some respects I’m probably lucky, I’m never going to have to deal with the ‘what if’ situation. I’ll always be on my medication and not have to run the risk of coming off it and having a seizure because my epilepsy isn’t in fact gone completely. It’s a sure fact that I’ll always have it and so maybe in that way it’s comforting.
However, on the flip side, there is the downside of knowing that this is me, forever. I have no problem in admitting I find myself incredibly jealous reading of those who have been lucky enough to grow out of their epilepsy or where the chances of them doing so are high. I find the best way to cope with that situation is just to not think about it – the Jane without epilepsy - because it’s never going to happen.
This is part of who I am, and I just have to accept it. Just some days it’s harder than others.
Subscribe to:
Post Comments (Atom)
14 comments:
there wont be a 'Dave without epilepsy' either. so we're forever united as the tag team for epilepsy awareness im afraid .... is that a good or a bad thing? :P
It's a good thing Davie boy, we're the 2 in 130 :D
(I've also decided to start calling you Davie, embrace it, it's not going away)
Hi, my husband was diagnosed with JME only a year ago, and he's 35!
Unfortunately, we haven't been able to stop his seizures, and gets them every two months. What are you taking? He's now on keppra and zonegran...
I'm on Keppra and Epilim, but it's taken me a long time to find the right medication for me, so don't worry if your husbands seizures aren't controlled by the first couple of medications he tries. Because there's so many different combinations/medications it can take a while to work it out.
Good luck! :=)
Thanks! And good luck to you too!
Hi, I ahve JME also, i was diagnosed when i was 16 and have just turned 25. I never felt it hold me back through college and everything i do. I continue to play sports, work and everything. I know i have it for life but the up side for me, is i only ever had one big seizure, i actually forget i have it as im just in tune with taking my Keppra morning and night and thats it. I always feel thankful everyday that im not burdened by my epilepsy.
Hello amigos/amigas:)
I have epilepsy as well, i'm actually not positive what kind i have, but i usually have grand mal seizures. i take keprra twice a day and they've been pretty controlled, i was seizure free for two years and actually just had my first one since then i few days ago from lack of sleep (i'm 19 and i cant help it, i enjoy staying up late!) I just really would like to encourage you, all of you.. i'm not sure where your faith stands, but i know where mine does... and i am a child of the msot high king... whats impossible for man is not impossible for our God. He is higher, bigger, stronger, and mightier than you could ever even fathom. Weather my doctor told me i could or couldnt grow out of my epilepsy wouldnt matter much, because God has the final say. he does, he does, he does, and he makes things all work together for our own good. even in difficult siuations where its extremely hard to have hope, or see any good at all, you must know that his ways arent our own. for months, no.. for years, since i found Jesus, i've been praying for healing from my epilepsy. Crying out to God begging him to just make it stop. i dont wnt to worry anymore, or be anxious... and after years of crying out for that my worst fear came true only a few days ago. Now i feel like iv got every reason to be doubting my God. Doubting that he's healed me, or that he'll EVER heal me, but if you refer to scripture it assures us when Jesus says: "whatever you ask for in my name, believe it is yours, and it will be!" Dont look at your cicrumstance to base your opinion on the father, believe what he says and apply THAT to your siuation. He is indeed mighty to save. and he will! Praying for all of you. if anybody needs to talk or connect find me on facebook!
http://www.facebook.com/#!/profile.php?id=644551661
Bless you all <3
Hi Jane,
My son has just been diagnosed by JME.He is 14.What was the first med you used so far,and why did you have to switch to another med?He is playing basketball,doc said it s ok,but ı am really worried..What do you think?
Thanks for being there..
The first medication I was prescribed was Epilim (Sodium Valproate) on a fairly substantial dose. It controlled my seizures completely but unfortunately I am prone to the side effects in most medications, and I began to put on a lot of weight. Epilim itself doesn't make you put on weight, but it increases your appetite so you always feel hungry (a horrible feeling).
After coming off Epilim I tried every other medication available to me but none of them worked as well and I still got the side effects from them, so I chose to go back on Epilim on a smaller dose than I was originally on. I take it in combination with Keppra. This means that I am almost seizure-free without the side effects.
It is natural to worry. Just ask my mum. Ten years after my diagnosis she still worries about me! But I've learned that even if I didn't have epilepsy she'd still worry!
All the best with your son.
Hello!
I was diagnosed with JME just before I turned 18. I only had a complex partial seizure but I got myoclonic jerks for a few years before but just didn't really take any notice of them.
I had lots of tests done and had an EEG to discover the problem.
I saw my neurologist a fair few times and he, and some other neurologists in Australia, all seem to think that you can grow out of JME.
Anyway, to the person who posted above, I thought I'd share my opinion.
I take Lammictal morning and night, have had no side affects and I haven't had a seizure since.
I went on a trip to Europe with one friend [a month after I'd turned 18] for 3 months so my mum was freaking out, which is completely normal.
I was first given 25mg, and had to slowly increase to 200 morning and night [this is slightly more than most people as I was moving to college and my epilepsy [well, Jerks really] is mainly caused by lack of sleep and too much alcohol].
As soon as I was on 50mg the jerks went away, and while I manage my lifestyle a lot better now, I haven't had a seizure, or any jerks since I've been on the full amount.
I was diagnosed with JME after having a grand mal seizure while getting ready for a church christmas concert at the age of 12 1/2 years old. I was rushed into the local hospital where they assessed me, diagnosed me with epilepsy but weren't sure on the specific kind so they made a referral into a neurologist. at first i was taking a low dose of tegretol which didn't help. some days i would wake up wondering why i was taking a medication that didn't work. once i got in to see the neurologist, he diagnosed me with JME and perscribed that i wean myself of the tegretol perscription and start taking valproic acid. at the beginning while i was being weaned off tegretol and increased the dosing of valproic acid i developed a rash to the reaction both the medications had on my system. i had to take a third medication to get rid of the rash which lasted a week, i felt like i had the chicken pox all over again... i couldn't stop itching no matter how much medicine i took or how much calimine lotion i put on. once completely on valproic acid, i started to notice certain side effects that i wasn't too fond of. i didn't like the side effects being a teenage girl and always being hungry and always putting on weight and no matter what i did it never seemed to go away. once i reached the age of 17, i went into my neurologist one last time before moving and asked to switch medications for various reasons. that is when i switched from taking valproic acid to taking topomax. i didn't mind taking topomax at first until i was getting comments that i had lost too much weight. i didn't notice and i attributed it to stress at school, lack of sleep, and too much walking. From september 2007-april 2008, i had dropped 80-100 pounds. Once i moved into Saskatoon, i noticed more and more that the topomax wasn't working properly. i had a petite mal seizure one night after waking up to go to the bathroom. i was rushed to the emergency and shortly after had an appointment with one of the neurologists here to get my medications switched back from topomax to valproic acid. I now find myself wanting to start a family but not wanting to pass on birth defects from taking anti- convulsants while pregnant. does anyone know of a safe amount of medication you can take while pregnant? that and i just want to change from taking valproic acid because of the long and short term affects it's having on my body. does anyone know of any other good medications that work for people with JME?
Hi everyone, my 7 year old has had 'petit mal epilepsy' since she was born, however this has since got worse and developed into myoclonic siezures. I have made the mistake of googling it and find my self in floods of tears as I write this, convinced that she doesn't have long to live etc. Please can you guys let me know your experiences in terms of how your eplilepsy progressed, severity and frequency etc.
I was diagnosed with Epilepsy twice. First, idiopathic generalized tonic clonic seizures (age 9) following 2 seizures and put on depakote and the second time with JME (age 14). This was after two years of no medication and seizure free.
Nuri, if your husband is only having seizures every two months, please know you are blessed. I was having at least 10 myoclonic seizures a morning prior to diagnosis. Also, please be weary of zonegran, a side effect is memory loss and I suffered from it before changing to Keppra.
Anonymous: Depakote (vaporic acid) made me fat, moody and tired all the time. Convince your doctor to change - Keppra is preferable. It is also considered safe for pregnancy.
Evey Lou, epilepsy is a scary diagnosis and can have genuine health risks for us, but it is not a death sentence. Finding the right medication and becoming seizure free will allow you some serenity. But in the mean time, minimize risks. Please watch your son at all times when swimming and climbing. AND educate everyone in your son's life about epilepsy and first aid. I highly recommend a medic alert bracelet. Please find a support group.
Jane, I found this page while looking for information regarding "out-growing" JME. I had an appointment with my epileptologist today and after 5 years seizure free he is sending me for an EEG. Apparently, I may be able to titrate off my medication and remain seizure free. I was shocked, I too, thought I would live with this for the rest of my life. I'm still researching however, I will make the EEG appointment and weigh my options at a later time. I will tell you however, I am terrified to come off the medication.
I hope this helps (sorry so long)!
Hi my name is Shealyn and I'm 15 now but when I was little I had epilepsy and I had it until I was about 6 then I grew out of it but I always have the concern that is will come back. But when I was little I would only have a seizure when I would go to bed and it always freaked me out.
Post a Comment