Hi Anne,
I am in my mid 30s & I was 1st diagnosed with epilepsy as a baby & only took tonic clonics (back when I was a baby they were known as grandmal). I took tonic clonics on a regular basis but stopped taking them when I was 3 but kept on meds until I was 7. I believe my drs thought I had outgrown my epilepsy but as I said my seizures returned in 2002 when I was 24.
I remember when I 1st joined this forum (6 years ago) a member said to me it is possible for your epilepsy to go into remission so I suppose I always had epilepsy but it didn't come back to rear its ugly head until I was in my 20s.
There wasn't a lot of information about epilepsy when I was a baby as they didn't have the same technology that they have now.
With the technology available now the MRIs picked up the scarring which is why the neurologist was able to say I had temporal lobe epilepsy.
I live in NSW but Im in a country town (only 2 basic neurologists in the area) so had my surgery at the Austin Health in Melbourne & still go to the epilepsy clinic at the Austin for yearly follow up appts.
All the specialists I saw in Melbourne when I was going through my pre surgery test (epiologists/neurosurgeon) believe that the scarring was caused by the tonic clonic seizures I had as a baby but no one knows why I went so long between seizures.
I was one of the lucky ones who had a good outcome with surgery (unfortunately it is not the case for all people who have surgery) as I have not had a seizure since my surgery (it will be my 3 year anniversary in March).
I am in the process of getting a disability support pension from the government and they require neurological reports and diagnosis for this to happen, I am seeing a Neurologist in Perth (I live in a regional area) in around a month - the waiting list is long if you are on benefits.
I tried for the pension twice & both times I was knocked back. The 1st time was in 2004 after my job was made redundant, back then I was told I could still work so was knocked back.
The 2nd time was in 2010 when I was going through the pre surgery tests & I was having trouble working because my partials were out of control & I was dosed up on meds (before my surgery I was on 3 meds, now im down to 1). The 2nd time I was told that my epilepsy wasn't classed as treated until I had the surgery, that p***ed me of because in my eyes my neurologist had been treating me for years but we just couldn't find anything to help with the seizures which is why we talked surgery.
In Centrelinks eyes epilepsy is a medical condition & not a disability so it is very hard to get on the pension with just epilepsy. You should have a medical report for your specialist to fill out which will be given to Centrelink & an expert in the disability area will assess the report. I don't know if it has changed much over the years but it used to go by points so what your specialists puts on the report can really help with the assessment.
Good luck with your appointments & getting the pension.