How long have you had Epilepsy?

[flameon1]

I was diagnosed in 1975 as having epilepsy. I was born with a sort of paralysis of my entire left side of my body. I have always had to bear clumsiness and pain throughout my left side. The pain is sometimes a bit much and I wish I could find relief. But, I believe I will just have to just bear it. I love life, family, and friends. I am looking for someone to correspond with to learn more.

[1096]

less than a year diagnosed. 6 years of symptoms.

[ashmstng]

I have had seizures since age 3. It started out with a grand-mal seizure then I never had one again. The rest are simple partial seizures. So I have had epilepsy for 23 years.

[spinnymommy]

ashmstng.... are you on any medications or special diets or other for your epilepsy?
Just wondering, please don't feel you have to answer if you don't want.

Kerin

[ashmstng]

Hello, Spinnymommy!
I am on meds. If you want to know exactly how much and which kind just click my name and it is there. I also have the Vagus nerve stimulator.

[hawke86]

I have had epilepsy for about forty years.

[Milagro]

24 years and still coping with it.

[Shelley]

I have had it since birth. Something happened when I was born, as I wasn't breathing (guess someone in the OR farted?). My mom never told me anything, except for dramatic effect. and then sporadicly.

"One week later my grandma called back and then tells my mom about her oldest sister of how they had to put her away because she would be wild as an Indian making a strange noise, falling on ground, and the parsonage told them she was demon possessed. They tried to cast demons out of her and could not. And her second eldest sister had the same spells later on after a bad bout of whooping cough and fevers, and they had to put her away. All there was left were 2 brothers and 2 sisters and we were instructed by our father never to talk about our elder sisters for they brought shame and disgrace to the family. "
I was concidered demon possed too. It was my moms 'cross to bear' for her 'sin' of marrying someone of a different denomination. Yet they thought it was important to keep me on phenobarb. Guess to keep the demons sedated.

"Epilepsy is KNOWN to go into Remission, if you didn't know that."
"But funny you should say that, I was telling someone how I went 22 years without having a seizure and the drs had told my parents that I had outgrown the epilepsy when I was younger. The person I was talking to had said to me that I could've still had epilepsy time during the 22 year break and just not realised."
Fortunately, this is true. I was able to join the military for a brief while. But during a security check, my sister told them about all the demon possession nonsense, and the chronic demanding of attention because of it.
(she wanted to be the family star, and is jealous that I got a bunch of unwanted attention.)
It seems tho' on looking back, my epilepsy never went away, even when 'dormant'.
I don't do meds, and I try not to discuss it with anybody, because of the primitive treatment I received when I was a kid.

[hawke86]

I have had epilepsy since I was two years old. I have had it for 41 years. I know what most of you are going through. Maybe one of these days there will be a cure. All we can do is hope.

[hunting lady]

Randy, there are new and better meds, some are expensive, but can get help with them.
keppra and lamictal are really good, my husband has not one seizue sent he's been on them.
Dr. posey his dr. even has dropped acouple of pills on the lamictal.
we are getting his lamictal in canda for it is cheaper for us. we are going for the keppra next. my husand has had seizures since he was nine he is now 59.
hunting lady

[Tralee A]

i've had it for 5 years and its still haywire. i'm having more tests done to see what the deal is. i got diagnosed with diabetes 9 yrs before and i got that from what the dr's reconned was acute meningitis (simple partial?).
i had my 1st seizure when i'd come home from college one weekend and i was standing in front of our fire place. i didnt fall onto but i "zoned out" and drolled badly ( i felt like someone had thrown water at me. i was soaked. and was so tired as well.
i usually have this gap in time after i have a big seizure but yet i find myself on my bed. i go into what mum calls auto-pilot. i know i'm going to be sore and that i'm gonna want to lie down. so i make that decision unconciously

[Loudmouth]

I started having complex partial seizures when i was 14,was diagnosed when i was 22, I'm almost 27, so...err...13 years or thereabouts now,diagnosed 5 years ago.

[Cinnabar]

I had my first Tocin Colic (Grand Mal) seizure two years ago. The results of the MRI showed that the left hipocampal are volume was 50% less than that of the right. I couln't believe what I saw on the film and was even afraid to leave my doctor's office.

He explained that stunting could have occured during early childhood trauma.
This I can attest to. My father was an evil man. So, not only did he cause psycholocial trama to my mind he damaged my brain.

I asked my neurologist why at this stage in my life (I'm 53) these seizures are manifesting? He said that...all my life I could have had been experiencing certain manifistations of Temporal Lobe Epliepsy. Of all the different categories of seizures temporal lobe epilepsy is the most mysterious them all (of course I get to have that one)

All of my life I've experienced out of boy experiences, bursts of highs and lows, personatlity changes. All symptoms of temporal lobe epilepsy. I've been diagonosed with Bi-Polar and Dissociatve Identity Disorder and have lived with these diagnosis for many years. I've come to understand that these two conditions are strongly tied to temporal lobe epilepsy. I may not have had psychological disorders all these years but brain abnormality.

I've heard of a woman who was able to successfully abe to rule out her psychological disorders and live and learn to live differently with the only diagnosis of temporal lobe epilepsy.

She must have gone through extensive testing eegs and such all of which I cannot afford now. I'm still with the "idea" that I have Bi-Polar and DID but would like to get to the bottom of knowing if these sytmpoms are just the symptoms of temporal lobe epilepsy.

Some people don't care to explore or understand thier conditions. But I want to know! I'm frustrated and greatly saddened not knowing who I really am. I trust my neurologist's word. I most likely have had temporal lobe epilepsy as early on as age three.

Always Laurie -who ever she is?

[Loudmouth]

i was even sectioned for 9 weeks at age 15 for " severe depression" which has now been removed from my medical records and changed to " effects from un-diagnosed left temporal lobe epilepsy" ,there are plenty of people who have been mis-diagnosed because of incompetent doctors, or ones who are reluctant to end you for the tests that you need. In England at least, you need to fight the NHS for everything you need. I would rather have to have medical insurance, at least you get some degree of choice as to who you see,as you are in effect paying for the service(or at least in part) In america. I have had my test results lost i have been under the care opf doctors who are so incompetent that they have been struck off...one GP AND two of my neurologists!!my Primary Care trust places Epilepsy so low down on it's list of priorities that we have NEVER had an epilepsy nurse in our Area.We do not have one neurologist who specialises in the treatment of epilepsy.I have had to fight for 5 years to be allowed to be referred out of the primary care trust's area to a specialised Epilepsy clinic 40 miles away(the closest one) Where there are these services. At present, as I have asked for this, while I am on A waiting list for an appointment at this clinic, none of the neurologist's in my PCT will see me, so the only 'help' I am able to get is from my VERY overstretched GP who has twice the amount of patients he is meant to...2000 for one GP instead of the 1000 he is meant to have...so not much time to actually LISTEN to me.This is why in my area,we are often mis-diagnosed,as the mental health provision is there where the epilepsy provision isnt so it's easier to say we have mental health issues than admit that they are not helping us!!!

[Cinnabar]

Hi Loudmouth - I just reply posted RobinN about the temporal lobe epilepsy dilema. I have been diagnosed with two pshyciatric disorders which very well could have been temporal lobe epilepsy all along. temporal lobe epilepsy is the most "mysterious" of all other epileptic categories. "Out of body experiences", "extreeme personality changes", "hearing voices" and other of the "odd". My neurologist said that I very well have been having forms of seizures my entire life .Then the two grand mal's within the past two years where I sustained injuries. I'd like a neurologist to formally rule out the "mind" bending conditions and allow me to live life knowing it's a "brain" abnormality I need to tend to. I have a good neurologist but to get the very best I'd have to go to into Manhattan. I'm in a terrible place regarding insurance so I understand your frustration. In the meantime, I'm keeping everything separate two psyc disorders and temporal lobe epilepsy. Three instead of just one. I'd really like to know who I am! Always Laurie

[Meetz1064]

I've had this blasted thing for 42+ years now. It'll be 43 in Nov. I was diagnosed at 13 mos.....so that tells y'all how old I am! All of it with t/c's but there's been some myo's mixed in. And, I think there's been a few complex partial's and simple partial's, too. Not sure, tho, about those.

[Cinnabar]

I've had this blasted thing for 42+ years now. It'll be 43 in Nov. I was diagnosed at 13 mos.....so that tells y'all how old I am! All of it with t/c's but there's been some myo's mixed in. And, I think there's been a few complex partial's and simple partial's, too. Not sure, tho, about those.

Are you saying you have Temporal Lobe Epilepsy? I guess any form of Epilepsy is still a mysterious thing. Anything that can cause loss of consciousness is a conundrum at least to us. Neurologists has a better grip no matter how we try to educate outselves....Cinnabar

[Meetz1064]

Are you saying you have Temporal Lobe Epilepsy?

Well now, this is something that the neurologist and I have to discuss the next time I see him, whenever that may be. You see, NOTHING showed up on my EEGs until the last couple of years. He LITERALLY jumped for joy when something finally showed up. Don't get me wrong, he's not wishing anything bad on me, it's just hard to make an accurate diagnosis without accurate info.

I have OODLES of witnesses to the tonic clonics, and to the myoclonics even. But the possible simple partial's & complex partial's are something else. They've only occurred that I know of, or realized myself 3 or 4 times.

So, I definitively have tonic clonic ep & myoclonic ep. Both are well-controlled. But I do think I have some simple partial's & complex partial's sneaking in. I might be wrong, though. But whether or not I have temporal lobe epilepsy is something I just can't answer right at the moment.

BTW, I like your new user name.......it's cute!

[Loudmouth]

my EEG came up normal...but that's only to be expected when they will only give you ONE EEG lasting 30 mins in 5 years..... I'm having a 6 day long video EEG in August, goodness only knows what fun they'll have with the traces from thatgive them something to get their teeth into i should imagine,it's about time!!it's only taken 5 long LONG years of fighting to get a video EEG. Epilepsy Action have taken on my daughter's case as they have taken away her diagnosis of epilepsy on the basis of one 20 min EEG that showed no abnormal brain waves...she's not even been seen by a neurologist!!they are gonna fight it for me because of the family history.I am insisting on an MRI for her + video EEG. THE FIGHT GOES ON!!

[Cinnabar]

my EEG came up normal...but that's only to be expected when they will only give you ONE EEG lasting 30 mins in 5 years..... I'm having a 6 day long video EEG in August, goodness only knows what fun they'll have with the traces from thatgive them something to get their teeth into i should imagine,it's about time!!it's only taken 5 long LONG years of fighting to get a video EEG. Epilepsy Action have taken on my daughter's case as they have taken away her diagnosis of epilepsy on the basis of one 20 min EEG that showed no abnormal brain waves...she's not even been seen by a neurologist!!they are gonna fight it for me because of the family history.I am insisting on an MRI for her + video EEG. THE FIGHT GOES ON!!

I think your child should definetly get an MRI. They wanted me to go for a three day eeg monitorning. But, I'm having insurance problems now so it's ruled out for a while. Always Laurie