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  #1  
Old 03-26-2013, 02:03 AM
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How were you diagnosed? Negative EEG?


How were you diagnosed with epilepsy? Did any of you have a negative EEG and still get diagnosed with epilepsy anyways?
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Old 03-26-2013, 02:42 AM
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It is quite common to be diagnosed with epilepsy without a positive eeg. The neurologist can determine it on your history and also if the prescribed medication is making any difference. I was diagnosed without a positive eeg but my symptoms were partial complex seizures which I have had for the last 8mths. Since taking medication I can now control them somewhat although I've had a pretty rough few days. Good luck and welcome to the forum.
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Old 03-26-2013, 03:42 AM
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Yes, our son began having tonic-clonic seizures in January 2005 and didn't have an abnormal EEG until March 2011 (when he was actually having a seizure). That's also the first time that a neurologist observed a seizure. He has had 15 EEG's since 2005 (including 4 overnight or 48 hour), and only 2 of the 15 showed abnormal brain waves.

However, based on our descriptions of his seizures, he was treated as if he had epilepsy, given medication, and later put on the Ketogenic diet.

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Old 03-26-2013, 04:22 AM
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I didn't get diagnosed after my first T/C... The second time I went to a doctor (sadly, a general practitioner) with complaints, they just sent me to the ER room for drug testing... So no EEGs again until I had my last T/Cs. At that point I had another EEG a few days later which showed up positive... but based on my worsening symptoms up until that last EEG, the neurologist who did the EEG diagnosed me anyway (prior to the EEG)
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Old 03-26-2013, 04:54 AM
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I was diagnosed after several tonic-clonic seizures over several years. The last one before diagnosis put me in the hospital with a blood pressure of 210/160. It was at the point that I needed to do something.
Two years later, negative EEGs and a clear MRI, no one knows why I have seizures. I'm fed medicine in hopes that it stops. I think that, in my case, epilepsy is the catch-all for unexplained seizures.

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Old 03-26-2013, 08:59 AM
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In my case, I had a grand mal seizure, and then a positive EEG soon after, so the diagnosis cam pretty quickly. I think it can me much harder when the symptoms are simple or complex partials that don't necessarily show up on EEG. In those situations, it's ideal to have a skilled, experienced neurologist who can make a diagnosis based solely on the clinical history (i.e. your symptoms).
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Old 03-26-2013, 09:22 AM
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It took a year in a half to be diagnosed. I had 2 EEG's both negative. But, my neurologist dr believed something was going on based on what I have shared with him and primary dr. He knew it from the first visit I believe, but wanted to be certain before prescribing meds, the first med he prescribed was lyrica on that first visit after telling him that my hand and head felt like they were crawling and that my legs didnt want to work when I wanted them to do so and a few other things as well. As months went on, new symptoms arose and here I am. I joined CWE 6 months after I started feeling like they (dr's) where giving me the run around. They stopped listening and went into a whole new direction. They thought it was anxiety or PTSD (post tramatic stress disorder) due to having an aneurysm. I have learned so much about epililepsy. I have days when I feel so wonderful, that I start believing that it was all in my head, that perhaps they were right. I go for 2 maybe 3 weeks and then...whammmy! Some strange things happen, for instants, this morning. I lost 10 to 15 min. I dont know what I was doing? when I suddenly realized that I had some place to be, I looked at the clock and time had lasped. The last thing I remember was brushing my teeth. It was 7:30 and I was suppose to be walking out the door, but I was standing in front of the tv with pj's still on. ? Oh well. sorry, didnt mean to drift off. This scares me. I find myself standing or just frozen, totally un-aware of anything. I hear sounds but cant associate with them, and I smell stuff alot. Amonia, flowers, rotten garbage, funky feet, pundgently horrible smell. it only last for seconds but grabs my breath. hmmmm, oh well...
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Old 03-26-2013, 09:43 AM
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I was diagnosed at my 1st appt. with my Neur. She did follow up with EEG and MRI which both came back normal.

Same test diff. Neur. many time results were always the same NORMAL until 2004. It was at a teaching hospital that found where my seizure come from.
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Old 03-26-2013, 10:52 AM
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hi and welcome here-
I was diagnosed in 2008 at age 38 after having two observed tonic-clonic seizures. I've never had a positive EEG after having had several. If I had to guess- I would say I've had five EEGs so far. It's hard to remember because I know a couple were postictal and I was out of it. Overall I've had probably guess I've had almost 20 seizures periods from what I've heard I'm guessing were all tonic-clonic. I'm keeping a diary as best as I can but I haven't done any sort of grand total.

I hate getting EEGs because they all have come back "normal" and it makes me feel stupid.
It feels like I'm getting a "SUUUURE you're having seizures... " look from the medical community every time it comes back negative. I know that's certainly not the case, but that's what it feels like and pretty much I like keeping to myself and don't really ask for help much because it makes me feel weak. Also I know it's not the same, the seizure activity can be elusive to the EEGs, but each time I've been hooked up to the machine it just feels like I should be able to "show" something for it - like checking blood pressure, where normal is GOOD - I guess I'm just disappointed in my inability to show something for something I'm unable to show anything for, other than pain and blood stains on some pillow covers.

At least with my last one (almost two weeks ago now) my girlfriend got some video of me in bed, but it's just during the end of the snoring/gasping thing.

Last edited by petero; 03-26-2013 at 11:38 AM. Reason: some clarity
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Old 03-26-2013, 11:54 AM
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I was diagnosted after my first tonic clonic seizure at the age of 18 months old. I was taken to the hospital and thats when they ran tests. My EEG came back with abnormalities while my MRI came back fine. Since then, thats how all of my tests have come back.
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Old 03-26-2013, 01:32 PM
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I was diagnosed very fast even with a negative mri and eeg based on what my partner had witnessed.
The way my neurologist explained it to me was by saying a negative eeg doesnt mean much either way, it's more of a clinical diagnosis, apparently there are subtle differences with epileptic seizures vs others, which is why its handy to have a detailed witness account from someone who has seen it - thats what she told me anyways
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Old 03-26-2013, 03:30 PM
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Oh my goodness maryltyme. You have just described my life except I am usually blessed with a whopping hangover and my horrible smell is always the same and can last for hours.
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Old 03-26-2013, 08:40 PM
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I was diagnosed after the MRI showed scar tissue on the right temporal lobe. Then a positive eeg follow up.
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Old 03-26-2013, 10:20 PM
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I've had two eeg's and both were normal but I had a grand mal two years ago and even though my Neurologist hasn't officially diagnosed me, my records say Epilepsy, don't know why that is. Neurologist is sure that the seizure was brought on by the brain bleed I had.
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Old 03-27-2013, 08:46 PM
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Some people have sub-clinical seizure activity -- seizures that are going on...usually in sleep...without any noticeable outward signs. This can be picked up on EEG.

Some people with epilepsy have abnormal brain waves all the time, or they may be normal in the daytime, but have abnormal waves during sleep -- in children, this can help diagnose certain types of epilepsy, such as Lennox-Gastaut. I think it can also help with adults in discerning WHERE the abnormal waves are -- thus can tell if it is temporal lobe or frontal lobe, etc.

Some people with epilepsy will always have a normal EEG unless they happen to be having a seizure when connected to the electrodes.

Some people with epilepsy will always have a normal EEG even WHEN they have a seizure when connected to the electrodes. This commonly happens with children who have a Hypothalamic Hamartoma (tumor on the Hypothalamus). The source of the seizures is too deep in the brain to pick up the abnormal waves.

Thus, a normal EEG should NEVER be used to rule out epilepsy. This is where eye-witness accounts and, even better, video, can be quite helpful. Some doctors, if not sure, will prescribe medication. If the seizure medication stops the seizures, then it can be assumed that the person has epilepsy.

The only problem is that about 40% of people with epilepsy do not respond to the first or second medication that is tried, even though they really do have epilepsy.
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Old 03-28-2013, 02:33 AM
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I took my 1st Tonic Clonic 35 years ago when I was 9 months old but I think I had either 2 or 3 more Tonic Clonics before I was officialy diagnosed with epilepsy at 11 months. I wouldn't have any idea of what tests they did on me back then.

My seizures stopped when I was about 3 but I started taking seizures again in 2002 when I was 24. When I started taking seizures again I was taken to hospital because I was dazed & confused, at 1st the drs at the hospital didn't know what was wrong & thought I was on drugs. Then I had a Tonic Clonic in the hospital & the drs then realised that my seizures had returned. I was sent to a neurologist the next day & had an EEG, the EEG showed seizure activity & the neurologist confirmed that my epilepsy had returned.

I had an MRI a month after & had other MRIs over the years. All the MRIs showed scarring on my left temporal lobe which the neurologists confirmed was the cause of my seizures. They think the scarring was from the Tonic Clonics I had as a baby.
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Old 03-28-2013, 09:04 AM
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I had a siezure on the school bus, ambulance was called so was taken to hospital where I came round. Anyway, Neurologist was contacted. Think I took a few months and quite enough siezures one was on my bike, landed on the oad I'm told, think
I had some scans which at least one confirmed epilepsy. Then my neurologist put me on tegretol. I'm not sure what siezures I have but I know one thing, they sure as heck aren't partial siezures.
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Old 03-28-2013, 01:30 PM
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2 grand mals of no origin, instant diagnosis. had 9 eeg's over the years, before going into the seizure unit, and they were all the same, 98 per cent normal. doc said the tiny bit that was off wasn't anything significant, but enough combined with the grand mals to confirm epileptic activity.
had mri's along with eeg's and all were clear, but only b/c they weren't picking up the lesion. thank christ for radiologists that actually paid attention in school, if it wasn't for her who knows how many more would have come back 'okay.'
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Old 03-30-2013, 12:15 AM
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Good point, about radiologists paying attention in school!!! for those radiologists AND neurologists who are exceptionally skilled!

We have some friends whose teenage son had epilepsy -- his entire high school was pretty much a wash because of the seizures and the meds.

He'd had numerous EEGs and MRIs, all of which came back "clear." The doctors didn't doubt that he had epilepsy -- that just didn't know the cause.

After years, his parents finally took him to a neurologist that specializes in brain surgery. He put the boy in the hospital, attached him to an EEG, stopped giving meds for a couple days, and boom -- he had a seizure that was caught on the EEG. Maybe more than one

Observing the seizure on the EEG helped the neurologist pin-point the origin of the seizure activity in the brain. They then did an MRI with special attention given to that area (I think with MRI's they can do specialized views with thinner slices -- or something like that). Anyway, they picked up a lesion.

And...here's the thing. After discovering that lesion, his neurologist (or radiologist? -- not sure because this story is 2nd hand) anyway they went back and looked at his old MRI's -- and that lesion had been sitting there all along -- it was observable on the old MRI's but the docs had missed it!!

Happy ending. Within several months, he had surgery, and that was the end of the seizures. He came off the meds after several months of being seizure free.

He got his intellectual sharpness back, after the cloud of seizures and seizure meds were gone, and now is doing well in university.

Last edited by KarenB; 03-30-2013 at 12:18 AM.
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Old 03-30-2013, 12:36 AM
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First tonic when i was seventeen,then another one six weeks later so diagnosed as epileptic.My EEG came back showing definitive signs of epileptic activety,so it was pretty well cut and dried.
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