How long did it take for your epileps... - Epilepsy Research...
How long did it take for your epilepsy to be diagnosed? Were you initially diagnosed with something else?
My epilepsy started at the age of 16, we think due to a hit on the head at the age of 14, stress of exams and puberty at that stage. After constant grand mal seizures I was sent to Groote Schuur Hospital for testing. I was sent for lumbar punctures, tried on all sorts of medications and was even sent for hypnosis. Finally, at the age of 19, I was properly diagnosed with epilepsy. My epilepsy has lasted for 39 years now, but being on the correct medication has helped to control my seizures.
It took a couple of years for me to be diagnosed with complex partial seizures. My GP thought I was suffering from stress but when the neurologist finally made the diagnosis my GP apologised and said I had obviously been suffering from classic signs of epilepsy but she just 'never thought of it'.!!! Have been on Carbamazepine for 5 years now since age 43. It seems to work for me thank goodness. I must admit I was happy to be diagnosed with epilepsy because I was sure I must have had a brain tumour to be causing the weird things that happened to me - I had thought epilepsy meant fits not seizures like I had.
Dawn
It took about 3 to 4 years for my epilepsy to be properly diagnosed. First of all the medics thought I did have it, then they decided that I didn't, then they wondered about migraine induced seizures. When they decided it wasn't that, in desperation, I went for a private consultation. That didn't move me forward at all - it just reduced my bank balance!! I then went back to the original hospital neurology department but to a different consultant, who said I most definitely DID have epilepsy and prescribed drugs that worked!!! So, yes, it can take a lot of time - and perseverance on your part - to get a diagnosis!! Since my proper diagnosis and medication, my daytime seizures have been totally under control although I do still get nocturnal ones! Like McAdoo, I was very relieved to get a final diagnosis because at least I then knew what was happening to me and could be treated properly!
Thank you very much for your responses ecossaise, McAdoo and lesmal. You all had quite a wait between first symptoms and official diagnosis, which must have been a very difficult time; but it's fantastic to hear that the majority of your seizures are under control with medication. We're hoping that we will get as many answers as possible to this question so we can get a good impression of people's experiences.
it took nearly two years because my neurologist wanted to wait until i had two witnessed seizures.So now i am on lamotrigene but so far my seizures have only happened when ive fallen asleep whether it be day or night
i was in work in matalan in green lane rock ferry at the time.. i think i was 21 years old when i got told i had epilepsy and my grandma was not well,i a care home.. lost my job because i had a lot of seziures\time off work. but now i suffer with stress spames that is another different type of epilepsy with they,s ones i get a headache pain in my right arm forget my memory and wet myself not good i am medication for them. but i had two early hours of wednesday morning not good.
My daughter had her first seizure at the age of 6 last year in March 2012. By June she had had an MRI and EEG and was diagonsed with epilepsy. There were no other factors that it could have been confused with so it was relatively straight forward. She was put on Carbamazepine and has had the dose slowly increased from 6ml to now 9ml. Touch wood, she hasn't had a seizure since Christmas. Hope this helps.
My 1yr old son has just been diagnosed with epilepsy following 8 'seizures' over the course of 4 days last week. Initially we were told he was fitting from pain (he was suffering with a throat/ear infection and teething), but 2 EEG's were done which showed signs of disfunctionality in a brain wave. He is now on Epilim twice a day, very low dosage and hasn't had a seizure since Friday. We are still a bit concerned that he may have been misdiagnosed and is on unnecessary treatment, but I assume the EEG has confirmed it? Sorry to ask a question in an answer, but has anyone else had a baby/v.young child go through the same? Thanks!
It took 4 years to get my seizures under control! This was partly because none of the medics involved at the beginning could decide what the origins of my seizures was!! I went to "migralepsy consultants', ordinary neurologists, private specialists etc (who did VERY little). My advice is to try VERY hard to find a neurologist who is also an epilepsy specialist - my life was transformed when I found a wonderful man who was just that - he actually understood what I was talking about!! Ordinary neurologists may be very, very good at what they do but epilepsy is such a specialist field that many of them have only a srelatively superficial knowledge of it.
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