Where are you from.
I am from australia. I have never had a propper diagnoses either but they seem to think that I have temporal lobe epilepsy or something. Some kind of epilepsy as there is no other explination for my kind of seizures.

I get told I am over weight by neurologists but not to my face to my dr my local gp in reports and I got told I had high blood preasure. Well wouldnt you also when you just had a seizure and a strange heart rate. That all goes back to normal after about half hour of the seizure but the the headaches set in.

One neurologist said to me there is no way that he could tell if I was or wasnt a epileptic because its a mystery as I was a puzzle to him, well to me that is plain and simple him telling me to medical question off I dont know what to do with you. I have seizures I dont know why but they only started 2 yrs ago and I am 22.

Since then I have been treated as an epileptic person or a persion with a seizure condition I am on keppra and epilim, I still have a huge seizure every 3 months or so and in between that I have small once but they are ok.

I have had 1 eeg non medicated 1 month after the onset showing nothing the neurologist stated except stress in areas of my brain, had mri, ct scans showed nothing, had speel dep eeg showed resonably normal results. So they now question weather it is ? True epilepsy.
What is ? True epilepsy even though when I ask what do we do now then they say well we still medicate you because there is no way that we can say for sure if it is epilepsy or not.
Thats where drs piss me off so much.

Try and get any medical records that you can from other drs and make your own appts to see another specialist. If it was seen once it will be seen again I asure you.

That is like me the other day I have been now admited to hospital 2 times in 3 months with terrible seizures they witnessed one while shining lights in my eyes doing the neurological test and I am now a little puzzled myself because I know as you know we are not faking what is going on with us it is scarey and I wouldnt wish it upon anyone.

Thanks so much for sharing! My son had a clear diagnosis and treatment of epilepsy for 3.5 years before our neuro sent us for surgery consult. We did not want this but neuro was worried my son had too many seizures to not look into this. Long story, doctor who lied and his reports do not match up to hospital record. All future neuros do not want to go against what he said....

We are in the process of ruling out any other thing that could be causing these "events" (i know they are seizures, my son knows....It is just neuros who do not want to say with no eeg seeing a seizure) abnormalities have been seen on 3 eegs, but others are normal.

His sister began treatment for seizures last year...She is responding to meds just as he did....I am concerned that she will end up with the same trouble and have meds pulled.

This is so scary to handle his seizures unmedicated, to see him decline in learning when he has lots. He does do better in times he has fewer seizures and does regain what he lost in learning and memory......

Thanks again

Sorry that I cant help
sometimes I feel that drs are took quick to want you in the room and out again and just say what ever they want to satisfy you or to get their pay cheque at the desk. Then others help you so nicley and its realy emotional on ppl like you with family whom have seizures and you know in your heart that there is something going on but you cant fix this thing. Because my family is the same with me. There may be times when as with your children I asume they are fine and then they have a bad few weeks or good and bad days. My meds are working to an extent but I mean are they insane to have taken him off meds.