Your EEGs have been normal, you have no diagnosis what did your Neurologist do next?

[AngelwithDentedHalo]

Okay, let's say your first two EEGs have been normal so you have no diagnosis yet, what did your Neurologist do next? When I had my first EEG, it was only two weeks or so after the Grand Mal seizure and my Neurologist told me that it's possible that it was too soon after the seizure and may be why it was normal.

I have another EEG soon, if that's normal, what's the next possibility, what did your Neurologist do, where did you go from there? Given my history, it's more possible than not that I definitely have a seizure condition but with no official diagnosis yet, things are so up in the air, I feel more worried that I don't have a diagnosis, than if I did & they said I do have epilepsy. Plus with no official diagnosis, I don't have enough background in that area to go on or don't know if or when this will happen again.

I sincerely believe I've had complex partial's in the past that I will tell my Neurologist about on the next appointment but when you think about it, our doctors depend on our history of symptoms to help them make the diagnosis.

 

[no.guru]

Are you on meds now? I'm not sure what an official diagnosis would do for you unless you need it for an outside agency.

My neurologist told me I had intractable E. When I later saw another neuro they told me there's not much documentation in my records to that effect, although I haven't examined the records myself.

What's most important is the Pez dispensers keep putting out.

 

[Rae1889]

well your question is my seizure history in a nutshell.

When I first had my seizures, I was told it was JME by my twitching. (purely by neuro basing off of symptoms) Then I had an EEG where there was some blips on it, but nothing major. Had an MRI that showed some damage to my right side brain kinda behind my eyebrow to temple area. Then had another EEG that was normal ( I was supposed to sleep through it but I couldnt sleep with people watching) so they said that it was now undertermined type. Then went into status, put into the ICU and family told that it was frontal lobe epilepsy.

MY first neuro was not comfortable prescribing me other meds than the 3 I tried, and one I refused, but was forced to take in ICU (I had allergic reactions to all of them. So he sent me to another neuro. This neuro did a VEEG and I had a complex partial and took majority of my leads off. Then when I had a large seizure, nothing was captured because there were no leads on my head. This neuro decided I was crazy, told me to move to the states to get help with psychogenic seizures and kicked me out.

I then made an appointment with a psychiatrist who told me I didnt need to seem him because I had no mental issues.

So now I am med-less, doctor-less and still seizuring.... but everyone ends up different.

 

[katzy]

did you do a 24 hour Aml. EEG or a Video EEG? Video EEG helped my doc diagnose me. It's highly unlikely that you won't find any abnormalities in either of those. So you can try asking your doctor for a referral. Sleep deprived EEGs that lasted 90 mns was a waste of time and money for me. I didn't have any seizure activity during those.

My doc put me on medication anyway after taking my family history(My dad's side has the epilepsy gene). My parents also wanted me to take it since I was going to school and they didn't want me to have a seizure on the way to school.

 

[LJ-Bain]

I would think that with your history of brain hemhorrages and brain surgery and everything else that they would not label your seizures as psychogenic.
You are already on Keppra, right? I know that with some people it can make their seizures worse...perhaps a different medication is in order? What does your neurologist think about your medication?
Some people never find out why they get seizures but are treated for epilepsy and medicated all the same.
I have had many eegs including ambulatory, video and sleep deprived as well as cts, multiple mris but they couldn't find anything so they said psychogenic but now after seeing an epileptologist they are saying brain stem seizures undetectable by normal eegs plus I have to see a neuropsychologist. I am going to be having a week to 2 week long monitoring session and the next step may be an intracranial eeg.
But I have never lost consciousness, only awareness so they are just partials and not tonic/clonic or grand mal seizures.
Everyone is so different.
I like to think of us like snowflakes.
Absolutely tell your neurologist about your complex partials!
I hope you get answers soon...waiting is sooooo hard but sometimes that is all you can do as well as keeping a seizure diary.

 

[PFunk]

I like to think of us like snowflakes.

 

[AngelwithDentedHalo]

Well, the complex partials I think I had, (meaning I don't know for sure they were back then cause I didn't know much about them), I had before I went on meds. I do have a regular Neurologist I love. I take the generic of Keppra.

The first EEG was the regular routine type, just hyperventilation and lights mostly, what I remember, that was normal. Being I had that one, he'll probably order a different type when the time comes.

Doctors think the Grand Mal comes from previous head traumas & that combined with ALL the illnesses, kidney failure, brain bleed, high potassium, etc, etc, that made everything errupt.

However, if I've had Complex Partials in the past before the brain surgery and everything else, maybe that is what lead up to the Grand Mal. Guess all I can do is wait. Thanks for all the replies.

I'm guessing the seizure came from deep in the brain, therefore not able to be picked up by standard tests.

 

[KarenB]

Angel, our son has had numerous EEGs over the past 7 years -- and they have ALL been normal -- even the 48 hour sleep ones -- except for one time he was in ICU (36 tonic clonics in one weekend) -- and then his neurologist was able to observe a seizure, catch several on EEG and do an MRI at that time (that was a little hard because he was seizing while they were trying to do the MRI). And, when he has seizures -- they're whoppers! His neurologist commented that she didn't know how we remained so calm. So...normal EEGs don't rule out epilepsy.

It WAS helpful getting those seizures on the EEG, because then his neuro team was able to see what type of seizures he was having, where they originated from, and whether or not they generalized.

It is my understanding that the purpose of doing an EEG not to diagnose epilepsy, per se, but to determine treatment. It can rule out (or confirm) certain types of epilepsy that have characteristic spikes or waves, even when not having a seizure -- for instance, Landau Kleffner or Lennox Gastaut. It can pick up whether you're having "seizure activity" in your brain even when you have no apparent seizures -- this can be helpful when trying to make a decision about reducing meds or weaning from the ketogenic diet, etc. And...if "lucky" enough to catch a seizure on EEG, then it gives the doctor a lot of information for prescribing meds or other treatment.

 

[PFunk]

My sleep deprived EEG came back normal after I was diagnosed. It's because my SP/CP seizers can generlized that they were able to say it was epilespy. I guess fighting off EMT's and Fire Fighters with postical super human strength helps.

I few years later I had an EEG that showed some "buzzing around in there" activity, but that was it.

 

[AngelwithDentedHalo]

When I had my MRI, my Neurologist never expected a bleed in my brain, he expected it to be normal and he was shocked when they called him and told him. He said at our next appointment and I stll had the staples in my head from surgery that he was shocked at what was found cause the cat scan showed "NOTHING" And the EEG was around 2 weeks later "Normal" Then the MRI 2 months later showed the bleed, so I'm thinking maybe things have changed since first EEG cause I wasn't bleeding at the time or just started.

My Neurologist said that things can change since I had my first one and with the bleed, it can possibly make a significant difference.