what was your first tell tale sign something wasnt quite right ....

[jayde-101]

that lead to you going to the doctors ? and what was it that made them diagnose you as having epilepsy

im just curious

 

[nicholas:)]

screaming out 10-50 minutes as dosing before reaching sleep, then auras, then convulsions
My fits are nocturnal

 

[epileric]

For me it was when I was between 3 & 5 years old, we were at the dinner table & I was telling a story then in mid-sentence stopped & stared off into space for about 30-45 seconds then came back to earth & picked up exactly where I left off in my sentence.

Of course it was my parents who knew something was wrong, I may not have even known it happened.

 

[Nakamova]

No warning signs, just a massive tonic-clonic out of the blue. Epilepsy diagnosis was confirmed by subsequent EEG.

 

[jayde-101]

hmm ive got the neurologist on the 22nd dec

 

[momof3boys]

I was dx'd with epilepsy at 18 months old. But my mom said I was having complex partial seizures prior, and her not knowing what they were at the time, didnt know they were actual seizures til I had a grand mal seizure at 18 months old. Thats when they said I had epilepsy and was put on medication.

 

[Screamy]

I fell off a bridge doing the care bear countdown and clocked my head off a rock, couple days later, laying on the top bunk in my room, starting having a grand mal and my Ma thought I was having a heart attack and called 911. YaY!

 

[Lunameower]

When I was 22 I woke up in an ambulance because I guess I had parked in the middle of a parking lot and someone just saw me sleeping there in my car, the last thing I remember before this was having an aura while waiting at the light to turn into the parking lot. I was diagnosed with diabetes ad even though a neurologist confirmed that the auras I'd been having since I was about fourteen were probably seizures, my doctor insisted that it was just diabetes related. Anyway about six months later my mom heard screaming from my room and found me having a full-blown grand mal which then my doctor put me on seizure meds.

 

[Dutch mom]

Myoclonic jerks in his sleep when my son was just a 1,5 years old toddler. He was jerking on one side, left arm up next to his head, head and eyes turned up to the left too. We recognized it to be possibly epilepsy because we have had a (Bouvier) dog with epilepsy, her grand mal seizures started out in a simmilar way. So we went to see a neurolgist. It took a whole year, several EEG's, home videotaping his seizures and a second opinion before he was diagnosed with epilepsy. About a 6 month later he was diagnosed with Lennox Gastaut syndrome. He had developped many other types off seizures by then.

 

[seizingbeauty]

My 1rst seizure was while I was in labor with my daughter. I was consious and shaking uncontrollably. They didn't realize it was a seizure right away, was shaking for over an hour before someone clued in to what was happening. My second seizure was a grand mal 3mths later. After many md's and repeated tests I finally found a doc who didn't say "Its just stress".

 

[elizzza811]

what was your first tell tale sign something wasnt quite right ....

Waking up with memory problems and being confused first thing was a big red flag. 'Dizzy spells' accompanied by a metallic taste in my mouth. Waking up not knowing what day it was (as in, is it Wednesday or Saturday?), not knowing what month it was on occasion (March or August?), not being able to remember one single thing I'd done the day before whenever I'd attempt to 'test' my memory during these 'spells', forgetting to pay my rent and not realizing this until a month later when the next month's was due and I happened to glance in my checkbook, running red lights on occasion and almost rear-ending drivers ahead of me (as if I'd 'spaced out') on days in which it felt as if my head wasn't 'draining' properly, going out with 4 or so errands to run and making the decision to return home after completing only one or two of them (felt as if too much was 'coming at me' at once - traffic lights, trucks, other cars, street signs, etc...), forgetting how to add, subtract, multiply, and divide, not being able to recall familiar phone numbers and even my own house number at times, wetting the bed (happened once), waking up suddenly and throwing up all over myself with only a second or two of 'warning' (nausea) and then taking a shower, only to find myself sitting in the kitchen a half hour later with wet tangled hair, damp clothing, and wearing the same puked-on clothes I'd removed before stepping into the shower, with no recall whatsoever of how I ended up in the kitchen.

and what was it that made them diagnose you as having epilepsy

Running my car off the road. All of these symptoms meant nothing until I crashed my car - only then did doctors take me seriously and start searching for answers.

 

[julienet]

Suddenly waking up stood up in the middle of a French class shouting "What!" at the top of my voice. Having these blips of blackness ......bits missing out of my life.

 

[masterjen]

A couple of times per week waking up inexplicably tired in the mornings and feeling like I had worked out all night for about 6 months, and then had first recognizable seizure.

 

[N Sperlo]

I was seeing an out-of-school counselor because my grades were terrible. He had just read up on complex-partial seizures. He recognized them and suggested I see a doctor. He was right.

 

[mikepen0287]

my family kind of noticed the absence seizures after a while, but i didn't know about the complex partials to a few weeks ago. managed to catch it when trying to record a video at home.

 

[valeriedl]

No warning signs, just a massive tonic-clonic out of the blue. Epilepsy diagnosis was confirmed by subsequent EEG.

This was also the same with me. I had to be put in a coma because that was the only way they could get them to stop the seizures. I was in the hospital over a month before they felt it was ok for me to go home.

I'm not exactly sure how I was diagnosed with epilepsy but they knew I had it when I left the hospital.

 

[girlwithadog]

I had a tonic clonic while I was taking psychedelic mushrooms. The neuro said not to worry I wouldn't have another.
A few months later I'm sitting on the couch after I put lunch on the stove (I was alone) and the next thing I know my ears are ringing really loud and off in the distance I hear a dog barking. After a few seconds I can make out the sound of my fire alarm, the house was full of smoke and my dog was barking (he did this every time I blacked out). I shrugged it off since no one was there and assumed I fell asleep.
A few weeks later, no drugs or anything, my husband was driving me to work when my body started tingling and I started getting black spots in my vision. Next thing I know we are way down the road and my husbands holding me up because I collapsed in his lap.
I still didn't go to a neurologist until 10 months after that episode when he gave me an EEG that confirmed epilepsy

 

[KatieCoy83]

I didn't at first but my coworkers were first to pick up on it. Apparently I screamed and ran out of the room. After the 3rd time My boss made me get checked out before coming back. Doc diagnosed it as panic attacks and put me on celexa and went back to work. After the next one she made up a BS reason to fire me (left the cafeteria dirty). This was 2 weeks before I was eligible to apply for health benefits. Soon after I got the MRI done and got the epilepsy diagnosis. Right after that I found out that she denied me unemployment. My dad called her and told her my new diagnosis and said he's contacting his lawyer. The lawyer said that the diagnosis dates and firing reason and dates close together gave us grounds to sue under ADA. The minute dad said that she granted me unemployment until my disability benefits started. Settled outside court you could say. Months later the day care closed down (karma?).

 

[jmac]

Been away for a few days holiday and when we came home first night I could not sleep for a twitch in my right leg, kept me awake all night. Went to see GP in morning as leg muscles were jerking by then, he had nurse take some blood tests then I got in car and made my way home, by the time I got home (within 10 minutes) my whole body was jerking and I was grunting but my head was clear. I managed to get home sat in garden chair and waited for someone to come home, the jerking and grunting never stopped and I was nearly pulling arms off garden chair as I was grabbed onto them, my son and his wife came and phoned for paramedics and I was taken away as I was being bent double with jerks by then. I had MRI and Lumbar puncture and various tests and was eventually put on gabapentin which I have been taking for 5 years upping them when I have had bad days but managed to go to work etc, 5 months ago had bad day at work could not stop jerking, lost speech and boss brought me home, been on sick ever since as I am having jerks every day from waking up and on/off most of the day and this effects my speach, still never been confirmed as epilepsy by GP or consultant but been told it is true Myoclonus with no overlying functional element, had eletrophysiological which has proved I have a discrepancy between left & right leg with slower conduction on left leg. I am going for 2 MRI spine scans on Cervical & Thoracic area. I take 1gm clonazepam, 1250mg keppra, 300mg gabapentin all twice daily but nothing seems to be working and I still cannot get a straight answer whether I have epilepsy or not and I cannot get back to work, GP and consultant have told me that I do not realise how rare this is as it is mainly in my torso and they think it is something to do with my nervous system and definitely not physiological. Been told on here it is epilepsy but cannot get it confirmed.
fed up.

 

[MAB]

that lead to you going to the doctors ? and what was it that made them diagnose you as having epilepsy

im just curious

Since I just have simple partials it took a long time to figure out. I was going to the doctor constantly complaining of tiredness and exhaustion, also weakness in my left arm and leg. They thought the weakness was from a stroke I had had in 2010 and the exhaustion was a sign of depression.

In August I saw my physicians assistant and again I complained about my chronic exhaustion. Again she mentioned depression. I told her if I was depressed it was only because I was always so tired. I also decided to tell her I thought there might be something wrong with my noise because I frequently smelled burning odors or sickly sweet odors that no one else smelled. She asked if I had headaches. I told her no. She said I needed to see a neuro. She told me then she thought that the symptoms were stroke related but not another stroke. I guess if I had mentioned the strange odors sooner, the doctors might have figured it out sooner instead of just falling back on the standard "do you think you are depressed?'.