Anyone with Epilepsy 19 years or more?

[mspang]

Hi there,

Back in 1993 is when I started to have my seizures, so this July will make 18 years. Just interested to find out if anybody has had more years with seizures than myself. As we all know seizures suck unless their in remisssion as I had for three years one time. Hopefully soon again I might have another remission as i'm now back on the drug that caused the first remission!

-Mike

 

[epileric]

I'm 50 years old & I've had seizures for about... Hmmmmonder: about 50 years.

If this is a competition then so far I've won.

I've never had a remission. The longest I've gone without a seizure since I started keeping track is 8 days I believe (maybe 10). I do think I've gone about 2 weeks but that was as a kid before I started counting & might be my memory exaggerating what seemed like a long time.

 

[tkopi]

I'm 46yrs old and had my first gran mal when I was eight. I do believe thats 38yrs I've been having these things. Before I was eight I was getting letters sent home from teachers saying I was "day dreaming" in class.

 

[momof3boys]

I just turned 30 in May, and Ive had seizures my whole life. As an infant, my mom didnt know what was going on til around the age of 18 months, when the drs finally dx'd me with Epilepsy. Ive been on medications since the age of 18 months old.

 

[Crystal11]

Hello. My twin sister and I have had seizures since age 6. It could have been before then..but it was formally seen by a neuro and it was suggested we try Tegretol at age 6. Teachers were calling home saying we were day-dreaming and maybe have ADHD and LD/Learning disorders. I can remember getting in trouble in 2nd grade for being "out of it" and my feelings were hurt badly. I will never forget my teacher saying "everyone else has lined up to go eat and youre then only one still sitting making everyone wait!" I had no idea anyone even got up out of their chairs to line up. I was embarassed for a long time about that bec the next day, children were harassing me.

My Mom would say: "Quit staring off!" "Come back to me" and "Its just your brain taking a break." This mad me feel like each time it happened, i was getting in trouble. I was very self-conscious about it and would try and hide it the best i could. They would come and "Get me" as i would say because they could happen in the middle of eating or walking, anything. It interupted my day and even now it does still. They can be 45sec-2min long and they can be harsh or less so, depending.

I was dx with Absence seizures although they didnt show up on EEG when i was 6. These "episodes" as they were called could happen 1-20 times a day and as i got older, it seemed to change a little from Absence-like to complex partials.
At 13 was dx again but with complex partial seizures and was started on Tegretol which didnt work very well.
I stopped Tegretol a year or so later and kinda gave up. Mom was very fearful of meds and made me believe that my seizures werent bad enough for meds. I am fortunate that they arent serious and life-threatening like GMs can be for some.

I now see an epileptologist for my seizure managment and take Keppra XR and Lamictal XR which is doing pretty good unless i dont sleep or eat well.
My eyes jerk to the right and get stuck as i say- sometimes my body tends to go to the right but its not dramatic. Dr thinks they are on the left side in the temportal lobe. They considered evals for surgery but ive already had 9 misc surgeries and dont care for another.

Its sort of strange- my epi doesnt like it when i say that im used to the little ones getting me. The longer ones really mess things up- she would rather there be no seizures at all but i tend to minimize my little ones and just say "im used to them" when really I shouldnt have any.
Sometimes i dont tell her all the little ones even though i should. I just feel its not such a big deal since ive had them for so long now.

Take care everyone
Crystal and her guide Umbro

 

[PragueClaret]

I've had epilepsy since September 1989 when I was 17, my first seizure I was sitting on a high wall and as a consequence fell off and broke my arm and jaw, and fractured my eye socket.

Epilepsy came into my life with a sudden bang, and has fluctuated ever since. I managed a few years of no seizures in my mid thirties, and now average about one tonic clonic a month.

 

[Meetz1064]

Eyah

Well, Eric and I are close in the time race, although I am just a few years younger. I am 46 years old, and have had E since the day I was born, but was not diagnosed until I was 13 months old.

So yes, Eric technically has me beat.

Have I had a remission? Well, that would depend on your definition. I am well-controlled now, but I have developed more types of E over the last 4 years as well, so I am now up to 4 types of E instead of just the 1, tonic-clonic. Other than that, I celebrated 8 years this past weekend of no tonic-clonics (grand mals).

 

[Elaine H]

Hi Mike
I thought it was me that had been stuck with my "wobblers" the longest ever!!! I was diagnosed with TLE in 1986 aged 23, and I'm now 48, so there ya go, a quarter of a century!!! I've had brain surgery twice aswell!! I call them wobblers because it's the only way to deal with it, and that is to laugh at it, my first surgery was in 2000, I was seizure free for just over five years, passed my driving test, got a great new job, and it came back in 2005, I then had my second op in 2008, and I still have cluster seizures, I try not to tell too many people with epilepsy about this, it doesn't look good does it, and I don't want to put people off surgery, it's just my bad luck I guess, and I seem to be stuck with it!
I hope all is well with you Mike, do let me know, what medication you are on etc, I am still trying to find the right balance, although one of my AEDS has finally stopped the dreaded auras, thankfully!!

Best Regards
Lainey

 

[Crash]

Ive been bloody well cursed for the last nineteen years lol,i had my first seizure when i was seventeen i can remember coming round in an air ambulance!!! Ive had peroids of no seizure activitey for up to two years,then three in a week.
At the moment im about a year seizure free,not including abscenses,i usually only count tonics but ive changed my lifestyle considriably so im sure that is the key and i try not to get stressed out over anything but thats easier said than done,but we all know that.

 

[Jfpinell]

39 years. ...At 2 weeks old.

 

[forward2007]

I've had it since I was 5. So 37 years.

 

[mspang]

To all who have replied so far I do appreciate it. Anyone who might ask a question or already have, I will answer everything tomorrow. Going in for surgery today for another problem that i'll let you guys know about tomorrow. Talk to you soon!

-Mike

 

[Kixnggls]

I am 47, and had peti-mal (absence szrs) since I was a toddler, formally Dx about age 5-6.. when I hit puberty they changed, and now have grand mal szrs, Yes I remember kids in school being very mean, as well as the teachers too. can scar ya for life!

 

[Jfpinell]

I am 47, and had peti-mal (absence szrs) since I was a toddler, formally Dx about age 5-6.. when I hit puberty they changed, and now have grand mal szrs, Yes I remember kids in school being very mean, as well as the teachers too. can scar ya for life!

This may seem like a strange question, but what have you all changed in your diet when these started getting worse? Mine started getting more frequent after we moved from our farm into town (City life...ick!) We didn't have the room for a huge garden and started eating most stuff out of cans, pre-packaged, etc. from the store. About 3 years later is when mine started getting more frequent and intense. Good timing? Maybe. But after I found the herbalist I deal with, and started using the stuff she started me on that gets all the built up drug and preservative residue out of your core organs, and starts getting things back in balance....well, I was only on that for a month and had a seizure on the bus. Even though, according to definition, I was in status, I recall sitting up in between them seeing and hearing everything that was going on. Also the first time in years I could walk away IMMEDIATELY afterwards without it taking hours to recover. The next few years things seemed to get even better....the next few generalized I had, even though I had more than 1 (which my parents told me always happened) they were spaced out longer and longer in between (which has never happened before either) The last generalized (or so it seemed) I had, I remember the whole thing: the shaking, etc. but was TOTALLY awake during the whole thing -which I never heard of and even Doc. couldn't understand. Since then (about 10 years ago) They have not progressed that far. A few close calls, but I haven't blacked out.
Hmmmmm.......I don't know how much more evidence anyone in my life needs to see, I've told people, but I'm more convinced than ever that Someone has already given us everything we need....who knew what He was doing better than we do! As I've said a hundred times, you'll never see this kind of thing in "scientific studies" because of the $$$ involved under the table by the drug companies. (I've even heard a few MD's admit to that!)

 

[Jake]

I just recentely found out I developed E in 1966 (always thought it was 1967) at age 14 so 46 years. Where has the time gone.

 

[sturg]

I'm 63 years old & i have had nocturnal seizures all my life. Diet & meds are working now.

 

[CQ:)]

I 1st started taking seizures 33 years ago when i was a baby & took seizures until I was about 2 or 3. I did go approx 22 years seizure free but started taking seizures again 9 years ago.

 

[sturg]

I found that eliminating msg/aspartame/exitotoxins has really helped me over the last 2-3 years. I also switched to lyrica which is a glutamate blocker for my brain. It's hard to get doctors to discuss that. It's on google though.

 

[PhylisFeinerJohnson]

Well, I guess that leaves me in 4th place...if remissions are allowed. I was diagnosed at 14 and I am now 58.

 

[Ruth]

I was diagnosed 62 years ago at the age of 6. I am now 68 years old.