how long did it take for you to accept reality?

[petero]

around how many tonic-clonic seizures did you have before you caught your stride with all of the mental, psychological effects?

it isn't an initial realization that epilepsy is something I got, and not something I had, by medical definition.
Do you remember your first seizure, getting diagnosed, and how long it took you to realize and come to terms with being diagnosed, and catch a stride with your seizures, triggers?

 

[momof3boys]

I dont recall my first seizure since I was a baby when I started having seizures. My mom said I was having small seizures, but at the time, didnt know what they were til I had a grand mal at 18 months old. I dont recall alot of my childhood days. I do recall my father leaving for business trips and coming home with presents. But as far as my seizures go, I dont remember alot til around maybe the age of 10? Thats when my seizures started to become more frequent and my dr tried different medications. For me, Epilepsy is just apart of who I am. Ive had it my whole life, so Im use to it. I wouldnt really know how to be without it?!

 

[Crash]

Mmmmmmm intresting question,for me i was 17 when i had my first tonic can remember it like yesterday.I then had another 6 weeks later and was put on the aed Epanutin.I never was told what sort of epilepsy i had,just given tablets to take,every time i had another seizure an increase in tablets.

I live in a small community,never had an epilepsy group to attend didnt know anyone with epilepsy so was always kind of left on my own to deal with it.Had an eeg and brain scan and was told what i already knew.

So between the ages of 17 and 26 i probaly had 20 to 25 tonics sometimes i would go a year,a year and a half be ok and then a few in a short space of time.With the mental issues i didnt really know or the effects of the aeds,as i had no one to really talk to until i found CWE then a lot of things fell into place.

At 26 i saw my first nuero,who put me on Tegratol,things got a bit better but i found a lot of solace in drink and drugs which never helped,im on Tegratol and Epilim and been seizure free for nearly 2 years due to life style changes.

So im 35 now,how long did it take to get to grasp with things? I think i took a good while,8 years a decade perhaps before i wasnt embarresed by having epilepsy,effects from the aeds,having my epilepsy nurse,it only took 17 years has helped a lot my doc is great.Epilepsy is part of me and i suppose im part of Epilepsy what a bummer....lol I could go further into it but im running out of space,please pm me if you have any questions Petox,all the best.

 

[Loopy Lou]

I had my first tonic clonic that I knew of for definite when I was 21. Took another public one when I was 22 before I got dragged to the docs. That was... just over 3 years ago. I'd been having partials and possible nocturnal tonic clonics since I were young though.

I still haven't got used to the idea and really struggle with my meds and identifying triggers other than stress and tiredness.

 

[huskymom]

I was probably 47ish (now 51) when I was diagnosed. Kinda came out of the blue. I thought that I had something else going on, then I had an MRI, found brain lesions, an extra bone in my neck, and that I was having nocturnal seizures! I know I just thought "I better get a new ring for all of this"! My husband agreed

 

[CarrieH]

I had my first seizure at 6 years old. My second came 25 years later at 31. Both were thought to be medication related until I had #3 after having my youngest daughter and being sleep deprived. Since then I've had 4 more seizures.

I asked my doctor HTH someone goes 25 years between seizures and then have 5 more in 3 years? He told me I had a natural low seizure threshold and when put into certain situations, stress and lack of sleep they will happen. I've had 2 in the past 3 months and I'm unable to drive at this point as I refuse to put my kids or anyone else's kids at risk until this is under control. I started Lamictal XR about 4 weeks ago, so I guess the answer to your question for me was the last 2 seizures I had (#6 and #7) made me realize this is something not to dork with. Along with my Neuro telling me that after you have one seizure you're more likely to have a second and with each additional seizure it becomes easier and easier for you body to have seizures. He said eventually it would get to the point where they are difficult to control and it's easier to deal with it now. I also had an abnormal EEG a couple months ago so I can't deny it anymore.

I do think this is a major life changing disorder and that going through a "mourning period" is totally normal. I denied it, got angry, got full of self-pity and at this point it's just another issue in daily life and yet another pill to take.

 

[petero]

....So im 35 now,how long did it take to get to grasp with things? I think i took a good while,8 years a decade perhaps before i wasnt embarresed by having epilepsy...

well said, I guess - I still haven't really had things "figured out" for me by a neuro/epileptologist - part of me thinks I myself am "faking" something somehow - as much as part of me feels like a total dumbass for not having any clue about anything that is going on or why
I don't have the guts yet to admit I'm embarassed, so your "embarassed by having epilepsy" is meaningful to me - these things are phases I guess - thank you

 

[Crash]

I certainly dont think you are faking anything,these things take time but what i wanted to say was im not sure any off us understand it,i know i dont,but it does get easier and you do learn to live with it.

 

[Brent]

I had been having partial seizures which I assumed to be migraines for a few years when I had what I thought could be a stroke (since I had no history of seizures). I came to terms with it pretty readily after my first generalized seizures shortly thereafter. However, as is frequently the case, we've never caught a seizure on EEG so there's no smoking gun - just an anomaly in the left temporal region.

I can say that, for me, it became very easy once I stopped trying to make sense of it.

Think about sleep, for example. Everyone, for some reason, needs to sleep every night (pretty much). We don't really know why, but we do. Now, imagine that only a small percentage of people had this need. We would view sleep very differently - as a real defect of some sort.

So, for me, I just look at my seizure condition as something that is a part of my physiology - like sleep. No point it worrying about "what", "if", "why", etc. It just is the way it is. So, just as people have figured out ways to live their lives around the need for nightly sleep, I too have figured out ways to live my life around the occasional seizure.

Since I can't change my seizure condition any more than a person can will away the need to eat or sleep, there's no point in giving it another thought. I just adjust and move on.

 

[gigi]

Hi Petox

Loaded questions... I am in my fifties. I was probably gearing up for that first TC at age 11 when I started periods. That was 1969. The denial was so strong for so many years, that getting a grasp on this condition, because it is so individualized has been quite a ride. It was unspoken in my house that speaking to others about this was, well, better left unsaid! I had failing grades in school, which was never officially attributed to my E. Again, the denial was so strong, I was just a bad student in the eyes of the education system, and my parents looked the other way, hoping I would excel eventually.

I was diagnosed with a Low seizure threshold. My EEG's were normal. My seizures were always nocturnal TC's, so no question that I was having them, even w/o a witness, I could not ignore waking up to total confusion and a bitten tongue. My seizures were few and far between. I raised two children, and functioned fairly normally.

Fast forward to the inception of the internet and the wealth of information offered to John Q. Public. The good news - finding out how I can have some control other than swallowing meds. Bad news - went status in 03' and almost died. A sling shot-out of denial and spent the next several years in a panic trying to hold on to my sanity, and obsessed about trying to stop the monster from within from reappearing. Coming to terms with my own mortality has been the hardest part. From denial to casual concern for my E. to sheer panic that I might go status again and awake with a tube down my throat.

I went through, and still do to a lesser extent, a mourning period for the regrets I have and the loss, mostly what the denial produced. It has shaped who I am today, as well as my fear of my own brain - that later ensued. What I have learned most of all is we are our own best advocate on so many levels, that we determine how our quality of life will be, and that does not solely come in the form of a pill.

 

[Belinda5000]

I was diagnosed at two so I guess 10 years . I was probably 12.

 

[QueenieKP]

Been racking my brains (no pun intended) about when I had my first seizure. I can't remember, I know I was 17 as I had to quit driving lessons and I was a bit useless learning to drive so when I told my instructor he said 'it's probably for the best dear'.

I just remember being so stupidly nonchalant about it all. My mum went to my appts so I barely took in what was being said. I was stupid about drinking and taking decent self care and just was ostrich with my head in the sand. I suppose in hindsight it might have been a dose of denial, but looking back all I can think is gee you were a twonk.

I was kicked out of 6th form for wilfully being epileptic, accidentally fell pregnant (gee thanks for the heads up about seizure meds and birth control) went status, having 218 seizures in 2 weeks.

So twonk I may have been but the gods' look kindly on us.

However, my breakthrough seizure I now keep meticulous records of every seizure, appt, medicine change. I look at my mighty tome of epilepsy and think cor I am 38 and a proper grown up.

Q

 

[marika853]

I was pregnant with my 3rd child in 1979 when I started having these feelings of deja vu. Went to the dr. and couldn't tell me a thing. I was 27 at the time. Fast forward to 2006. My children are raised. I had one grandchild that died at 10 days old, have another on the way. Am working full time, going to school at night. My eldest son is bipolar. Start having nocturnal episodes. My husband witnesses these and we see a neurologist that says, "you have epilepsy"
Wow! Where did that come from? I guess I still don't believe it. I have never had a grand mal. Always know when something is wrong. Is this really epilepsy or something else? All the tests that were done showed nothing. So what's the problem! They don't know, I don't know! Does anyone know?

 

[MAB]

I was only DX'ed last month. In a way it was/is a relief. Since I only have partials, I was continually going to the doctor with all kinds of strange symptoms and no one could really figure it out until I finally told my doctor about all the strange phantom odors I have experienced for the last 3 1/2 years. All the strange symptoms started July 28, 2010 the day after I had a small stroke. Once I told her about the odors she told me I needed to see a neuro because she thought they were caused from the stroke.

Even though I have only been on Lamitical for a short time and haven't reached the full does yet, already the partials have lessened in number and strength. Since they are only partials the neuro hasn't reported it to the state so I am still able to drive. Although I don't like having an illness at least I know longer feel like I am crazy.

 

[mejohn1]

Don't know that I've accepted reality to be quite honest. I've had partials for 27 years, and like Brent mentioned earlier, I just viewed it as part of being me. There were a few occasions where I locked up the brakes in the middle of the road (once a highway...yikes) because they popped on me so fast. I never mentioned the aura's or the daily deja vu to a doctor because I didn't want to hear anything was wrong with me. Not until I was engaged did my fiance convince me to go a neurologist; sometime around 1999. Nothing really helped get rid of the partials but the meds took away the aura so I was getting hit left and right with no warning. So off the meds I went thinking I was stronger than E. Life continued on until this year when I had my first grand mal; which apparently was a big one. I don't remember much of that entire week. Life's just been crazy since then and it caused a massive amount of unwanted change. I'm currently on Keppra and Lamictal, and am still having break through partials. Who knows when it will ever stop....or if. But every day I wake up, thank God for another day, get the rugrats off to school and go about my business. It's either that or curl up with a government check and a bottle of Sailor Jerry. Thanks but no thanks. I'll take my disease, aliment, curse, whatever the hell it is, and go on with life....however up and down it tends to be.