Epilepsy Diagnosis

nicnacnert

Hi all

Have been having some trouble getting an epilepsy diagnosis in the last year... have had 3 blackouts over the year only one witnessed (with minor seizure like symptoms but the other 2 not seen).. initially doctors thought it may be heart or hormonal or blood pressure problem.. then they decided no it probably was epilepsy, but nobody seems very sure! Sayin all that i am on a drug for it and not driving... just interested in hearing other peoples experiences or if unexplained blackouts are just written off as epilepsy without actual certainty!

emzolita

I had it all of my life and it was only diagnosed when I was 17, and then the seizure type only diagnosed after spending 2 weeks in telemetry, the Epilepsy Video Monitoring Unit.

it's very hard to diagnose Simple partial and Complex partial, both of what sound like you could be leaning more towards. You need to keep a diary of when they're happening, tell all of your friends and family to video it as soon as it happens so you can show your neuro.

if you have no more, I would look at reviewing your epi meds, as you could have just taken 3 mild seizures if you were havin a stressful time, and may never have any again.
epilepsy.ie have very good info online

nicnacnert

Its just so hard to know...at 27, nothing like this has ever happened before! but thanks for your insight and i will definitely be lookin up some info from epilepsy.ie .... crazy the amount of things that still cant be diagnosed with all our technology

LegacyUser

emzolita wrote: »

I had it all of my life and it was only diagnosed when I was 17, and then the seizure type only diagnosed after spending 2 weeks in telemetry, the Epilepsy Video Monitoring Unit.

This. I spent a week in Beaumont in 1995 with cameras watching me, having been taken off all my medication. They wanted to see how I acted when I had a seizure and collate that with EEG, MRI etc reports to find the root of the seizures. I wrote about it here. I had been told as a seven-year-old back in 1980 that the doctors thought I had epilepsy. A power of drugs was thrown down me for the rest of my childhood and all of my teenage years. Things just got ineffably worse. Hell. It was only 1995/1996, after tests like the above, that they finally decided I had temporal lobe epilepsy. In February 1996 I underwent brain surgery to cure it. I never again had a seizure. My life has changed for the better incredibly since. As this email indicates the scars remains, although they heal with time.

I would still be having attacks if I hadn't, as a 22-year-old in 1995, made it very clear to my doctor that I had no will to live anymore with all of these seizures, continuously losing jobs, not being able to drive, not being able to keep relationships....

Don't let yourself be a number. Push them for a definition of what your illness is (uncertainty is very stressful). Push them for a resolution. Make a stand. Ditch your consultant if you feel he's not up to it. Look for a neurologist who has spent time in the States was good advice which I received in the early 1990s (as they tend to be more familiar with the latest research into epilepsy). You have the power until you allow yourself to be a number. It's all up to you now.

cassid

Two of my children have epilepsy, one diagnosed at 2, with very obvious ticks then seizures. His brother was just diagnosed at 4, he was much harder as EEG came back clear, but we have recorded his absent seizures as did the creche. He has brought into Temple street for a few night monitoring and it was apparent then what was happening. There is a really good FB group Epilepsy in Ireland (think its called). I am sure its a difficult thing to register at 27, as you are still so young. x

westliferule

I had my first seizure in six years about three weeks ago I have been taking lamictal I was just wondering is it possible to get prone to theses and its stops working after time. please help!!