How long have you had Epilepsy?

[Loudmouth]

The world renowned british national health service for you....more like the health disservice! I spend my Whole life chasing and chasing appointments. Believe it or not, it took me 6 MONTHS to get the results from that EEG!!

[homemom360]

i've had seizures since i was 13 or 14 in high school. they started out as simple sensory (it felt like my face and hands were numb) seizures and absence (i just sat and stared at nothing)seizures. these were most noticable when i was in the middle of a conversation and just stopped talking then started again a few minutes later without even knowing i had stopped. then when i was 20 i also started having full on g. tonic seizures. i still have the other kinds and the g.t.. this lasted till about 18 mnths ago when i started spontaniously having myclonic seizures. my husband brought them to my attention by asking me why i kept jumping for no reason. i started paying alittle more attention and noticed that i would get a really tense feeling in my chest and i builds and builds till i jump, kinda like pushing a spring till it springs back. the last change in my seizures is what has sent me back to the doctor. because along with it has come alot more difficlty with concentration and communication.

[hawke86]

I have had seizures since birth. Some days are good and some days make you feel like you're defeated. That's how I feel sometimes.

[joey]

first seizure at 15 diagnosed at 16

[Cinnabar]

first seizure at 15 diagnosed at 16

I have Temporal Lobe Epilepsy and had my first seizure two years ago. temporal lobe epilepsy is one of the most mysterious forms of epilepsy and my doctor told me I could have been having mini seizures all my life. Explains for some strange happening...
Laurie

[Cinnabar]

I was diagnosed with Temporal Lobe Epilesy over two years ago. My MRI showed that the left hippocample volume was 50% less than that of the right, stunted most likely due to early on childhood abuse. A yes to that one. He explained thate temporal lobe epilepsy is one of the more complicated, mysterious forms of Epilespy and I could have had mild episodes throught my life: such as out of body experiences, mania and psychosis. All my life I've experienced the above mentioned and hence have been "triple" diagnosed for psychiatric disorders. My doctors are now scratching thier heads about the complications, medications, basically how to treat me. I continue, now, to have Tonic Clonic Seizures but less than Nocturnal ones. I don't know why the Tonic Clonics are manifesting now at age 53 but I was told by my neurologist that with temporal lobe epilepsy they can manifest at any time in life. I've had the triggers all my life which could have thrown me into full blown episodes, the same triggers which had brought on tonic clonic seizures two years ago. All this is frustrating quandry for me causing me to wonder if at age 53, I've just worn down with age rendering me more susceptible to the biggies. A quandry which is forcing me to re-evaluate my past, my life, now, and my sense of self. A question: Can anyone identify with my dilema? If so I would'nt mind hearing from you. As of yet, I've not come across anyone on the site who's expressed this kind of frustration and fear. Always Laurie

PS I usually take a question and stretch out a relpy. Typical me. But this is a very good thread and felt I could go into my details because it's not easy to pin point "when" I got Epilepsy.

[haird18]

Starting in1978 at the age of 4yrs. old I had T/C or Grand Malwhich became status epileputis this was just after being adopted. I spent most of that year in and out of hospitals all the way through 1980! After we found apediatric nuerologist in San Antonio TX who took my case and got control of my seizures until I turned 13 when my seizures erupted again and contiued ever since. I am having now three types of seizures and had one surgery which hasn't helped and I get stressed because I have to many other brain problems! So I have had seizures for 30.5 yrs. now!
David

[Bernard]

... All this is frustrating quandry for me causing me to wonder if at age 53, I've just worn down with age rendering me more susceptible to the biggies. ...

There is a lot of evidence that the brain works like a muscle (after a fashion), the more you exercise it, the stronger it becomes (or the better it works). People who stay active can have sharp mental faculties until very late in life.

From what little I've read on the subject, it does appear that you can arrest declining abilities with the right approach (whether it involves working logic problems or exercising with neurofeedback or the LENS system).

[Cinnabar]

Bernard - Thanks so much for taking the time to read my post. I've been meaning to look more into neurofeedback and have never heard of the LENS system! (will be checking that out). About sharpening the brain: I'm an avid reader of the classics and quality modern day literature. Every morning, I enjoy working out anagrams (which I suppose has little to do with solving the logical). I'll look into your two suggestions. And again, thank you for reading.

I figured out that all of my seizures are followed by "over the top" paranoia. Will look into your suggestions. Always Laurie

[darkmarkshark]

I put since birth, but officially its only been about 4 years. I have many memories of having to stay in from recess because I didn't know what we were doing in class and now i suspect that was because of absence seizures. I was even yelled at for goofing off when I hadn't done anything wrong

[Cinnabar]

I put since birth, but officially its only been about 4 years. I have many memories of having to stay in from recess because I didn't know what we were doing in class and now i suspect that was because of absence seizures. I was even yelled at for goofing off when I hadn't done anything wrong

I had my first Tonic Clonic drop down seizure a few years ago but my neurologist explained that I could have been experiencing milder symptoms my entire life.

[seizures4ever]

I was born with a brain malformation. Technically, I have had seizures all of my life although I wasn't diagnosed with epilepsy until age 16. As puberty progressed, the "spells" and "active imagination" that I always had throughout childhood, morphed into the simple/complex/tonic-clonic seizures that I continue to battle.

I voted "since birth" because I've always had what we called "spells" as a child (mostly deja vu and visual distortion). But I have had the "official" epilepsy diagnosis for 16 years...exactly half my life.

-Julie

[joey]

i had a seizure a 13 but too was diagnosed at 16, almost exactly half of my life. im 31 now.:bigmo uth:

[seizures4ever]

i had a seizure a 13 but too was diagnosed at 16, almost exactly half of my life. im 31 now.

Hey Joey

That sucks that you've been diagnosed for half your life too...it's hard to remember life B.E. (before epilepsy). To tell the truth, after 16 years, I don't really remember (like you said, I too had been having seizures years before the diagnosis). Well, it's cool that there is somebody else here about my age.

Take Care,
Julie

[Cinnabar]

Hi, Julie
I have Temporal Lobe Epilepsy. A very strange form of the Epileptic Condition. I had my first seizure two years ago. I'm mid-aged and asked my neurologist "Why now, so late in my life"?"

He explained that I could have very well have had forms of seizures my entire life. Symtoms of temporal lobe epilepsy can be having out of body experiences, personality changes, time travel and other peculiar happenings. I've experienced all the above and more throughout my life.

Back in the 70's having out of body experiences were an indicatication that you were an "enlightened" being. (Rembember Shirley MaClain's book "Out on a Limb"?) You may be to young to remember, but she described her out of body experience, when in Tibet, as the ultimate spiritual experience. The book was all the rage!

So, I walked around considering myself as being a highly spirtual, enlightened person. (I am a more grounded spritual person and nothing can take that away from me!)

Age took it took its toll and my suseptibility must have weakened, so I had my first Tonic Clonic Seizure two years ago, sustaining injuries. So much for being enlightened!

Now, I'm reading up on Temporal Lobe Epliespy and the Paranormal. There is so much to discover about Epilepsy in general. We all have our special strains. This site has supplied me with so much information, coupled with my own research and of course my neurolgist's feedback, I pretty much can say I've had Epilepsy all of my life. Having been diagnosed with psychological disorders are now being reconsidered. All along, all this might have very well been neurological. It's difficult, now, re-evaluating "who I am".

I think it's only natural to wan't to know. Some people aren't into exploration and that's fine. Sometimes it's just enough to know how to fend off seizures. But the mind fascinates me. Always has. Now, I get to explore mine further and in a different way

[joey]

Hey Joey

That sucks that you've been diagnosed for half your life too...it's hard to remember life B.E. (before epilepsy). To tell the truth, after 16 years, I don't really remember (like you said, I too had been having seizures years before the diagnosis). Well, it's cool that there is somebody else here about my age.

Take Care,
Julie

that is cool , keep in touch

[seizures4ever]

Hi Laurie,

I know your journey with epilepsy started later in life, but I agree with you that exploring and finding "who you are now" is very important. Some people don't want to know...educating yourself about epilepsy is no walk-in-the-park. It is time-consuming, intimidating, and can be scary at times. But I think it's very important for people to understand their diagnosis...otherwise how in the heck will they ever find out "who they are now?" Take care my friend.

Joey,
Hang in there. Seizures can really mess with your life, but eventually things come back around. Write on the forum when ya need to. -Julie

[Cinnabar]

Hi Julie - Sorry I didn't get back to you earlier but life has been dealing me out some challenges. No seizures. Just a relative trying to set me up for one....your know the saying "You can pick you own friends but ........."

[joey]

Hi Julie - Sorry I didn't get back to you earlier but life has been dealing me out some challenges. No seizures. Just a relative trying to set me up for one....your know the saying "You can pick you own friends but ........."

but....... slappin around your family members is so much funner

[Cinnabar]

You bet Joey...wanted to "slap her happy" right in the face. But the personal disappointment would be that I couldn't make her look any uglier than she already is. Ugly comes from inside, too, and there's no operation which could fix that either!

Hey, what are you doing with your writing talent (you really are good - spicey work). Why not drop one in Our Page. Hey, maybe I could write a poem about the cousin from hell! and light up the page!