Hi,
Ive been suffering for some kind of seizure since last october that might be related to an intermittent inflammatory syndrome (Behcet's) that Im waiting to see a specialist for. I was in hospital for 8 days over xmas so a neurologist could do an MRI, EEG and bloodwork on me all of which are normal so he discharged me. All I got basically was 'your seizures arent epileptic, congrats, go home'. He didnt give me treatment, advice on how to cope with them or even tell me what they are. I seem to have two types both of which I'm unconcious of - in one my boyfriend tells me I just stare, dont blink at all, dont respond to lights, noise or touch then seem to fall asleep - in the other I actually convulse, lose bladder control, slice my palms open with my nails and make choking noises. Does anyone know what these are? This whole thing is terrifying for me and they're getting worse and kind of dangerous. Twice Ive been found facedown in my bathtub and Ive narrowly missed falling on my cooker hob. This by itself is horrifying, not remembering anything during. The side effects, memory loss, weakness on left side, right sided migrane and blurry patchy vision, along with my daily problems, arthritis, urethritis, iritis, IBS, skin rashes ect make this whole thing unbearable. My partner is a full time student and can only give me 2-3 days a wek where he looks after me and the people I live with are asses who wouldnt think of helping even when I was screaming after injuring myself badly in a fall.
Im going into a bad patch of inflammation now so they're getting worse and I so scared. How can I cope? What can I do to make myself safe?

Hey Blonde,
Sounds like you are having a rough time with lots of things! One question, did you have one of your typical seizures during the EEG? It is possible to still have real electrical seizures and have a normal EEG in between seizures.

The non epileptic seizures are treated with Psychotherapy so your specialist should have referred you to one. So sorry, there are many who get that label and it is hard to get to the truth if is not psuedo but epilepsy instead. You can get a second opinion....


Hang in there!

Hey Blonde,
Sounds like you are having a rough time with lots of things! One question, did you have one of your typical seizures during the EEG? It is possible to still have real electrical seizures and have a normal EEG in between seizures.

The non epileptic seizures are treated with Psychotherapy so your specialist should have referred you to one. So sorry, there are many who get that label and it is hard to get to the truth if is not psuedo but epilepsy instead. You can get a second opinion....


Hang in there!

Hey,
Thankyou for replying. I didnt have a seizure during the EEG I had on the next evening. But then docs waited another 3 days to do the MRI which means any behcets inflammation would be long gone. My neuro did refer me to a psychiatrist but not for the seizures. I those three tests he did and the oh...20 mins or so in my presence he spent he couldnt find a reason for my physical problems. He told me I was seriously mentally ill. My opthalmologist, the behcets specialist is foaming because behcets doesnt show up in the blood or leave leisions for an MRI to pick up. Its just difficult to get someone to look at me seriously.
Anne

PS my father is epileptic, does this help?

Anna, That neuro has joined my least favorite club!! Hate that type who thinks he knows so much that he can tell with a brief look!!

Have that eye specialist help you get a decent neuro...


The jury is out on whether it is heriditary, but I think it raises your changes by making you more susceptible.....(excuse the spelling please, I stayed up all night for a 6 hour VEEG for my son today...!!! Little loopy here)

Keep pushing for answers!! So easy for a medic to put down to mental illness when he just does not know in his brief look!!!

More info is available at epilepsy ontario and epilepsy foundation answerplace...

Hi Blonde,

I have 2 E kids.

Jenny (15) all NORMAL tests, EEG, MRI, Blood work ups etc. Nothing! Jenny has the absent seuzures - stares, little or no blinking. They are actually Complex Partcals based on the length of time they last, 35 - 45 seconds. Most absent seizures are 5 - 15 seconds.

Jake (2) on the other hand has never had a normal EEG, all MRIs are fine - and Blood work shows nothing. Jake has staring spells as well as Grand Mals.

Please, please look for another Neuro. Do not take this lightly - it's your life not his and for him to lable and then dismiss you because of a stupid test... unreal!

The kids' neuro does feel that genetics are going to prove key in Epilepsy in the future. SO YES the medical community would look at you more closely since your father has a history of E.

Good luck - Don't give up! There are those here cheering for you and wishing you only the best! Be well!

Love and light

Lisa and kids