I am a third year journalism student doing my dissertation in the form of a radio documentary on the lack of awareness and the stigma surrounding Epilepsy. I was hoping to get in contact with people willing to speak out whether they wanted to remain anonymous or not- please message me for more details.
Thank you
I would quite happily help - what do you need/want? 
I have had epilepsy for a long time, back in the early 1970's when I left school, at sixteen, I was told I would have to leave at Fourth form, my parents wanted me to go into a mental establishment. One medication phenobarbitone. A student that was studying epilepsy, qualified as a full time specialist, in my twenties, he being the same age as myself, has been my specialist over the years, just retired recently, without him, life would have been much darker! I wish him well in his retirement. Lucky enough they got me a job, since then I have had many jobs, but on the way, qualified chef, my own genealogist business, and a History degree, at present waiting for a book that I have taken seven years to compile to be published.
I was ignored shunned, I kept my gran mal epilepsy as secret as possible from as many people as possible. I have had about 400 seizures over the years, stress is mostly the cause, now fully retired, less stress less seizures, two since October 2013. Never had a proper girlfriend, to be honest there, my health has never been very good, other medical conditions. Never really able to really let myself go have wild parties, late nights, etc, etc. Social life has always been very poor, lack of transport does not help either! I found my true friends over the years, they knew I had epilepsy but took me as I am, some 'friends' when they found out ended up ignoring me altogether! One of my best friends, was rather alarmed [about thirty five years sago], when I had a seizure in my living room, the rest of my family just walked past, "he's just having a seizure!", they were so used of what was happening. A rather nasty experience, while studying for my degree 12 years ago, a fellow student had a mild seizure, I was able to look after him, three students sitting in front of me asked whether I had had some medical treatment, I said no I have epilepsy, all three of them reversed their seats abruptly in alarm [ignorance is bliss?]
The changes in epilepsy medication and general public awareness of what the actual condition entails has really changed over the years. I have certainly been through a majority of them over the years, some with very dramatic side effects; one affected my thyroids and I spoke in a 'high' tone, another was nicknamed 'the forty minute pill' a person would talk to me and forty minutes later I would give back an answer, usually all the medication makes me slow and lethargic.
Quite a few times a person might be having a seizure in public view, I am able to 'sort' the person, wide berth, make sure the person is in a recovery position, I usually put a coat under them when they are having a seizure, check their mouth [they usually clench their tongue] {they do not swallow their tongue, an old wives tale} and if hurt while having a seizure call an ambulance, if they are not hurt let them rest a bit until recovering consciousness, let a close friend or relative take them home [they usually have a bit of a headache], etc.
Anymore help on this subject please get in touch!
Penobarbitone, that is going back a FEW years, that was the first medication I was on, so long ago I can't remember my side effects with it, about 30 years since I was on them, although ALL the epilepsy medication have some sort of side effects, I was on epilim and lamictal, although as usual making me slow and lethargic, it did leave me with Parkinson's side effects, [severe shaking, especially of hands], tested no Parkinson's!!! I had two seizures from December 2013 to when I got off them last month, it did stop the seizures, but it's stress that sets me off, I am fully retired since 2013 less stress, in essence no real guide that epilim stopped me having seizures? Actually last year was a first I have had epilepsy for 47 years, 2016 was the FIRST year I did not have a seizure in that time! Everybody has some sort of side effects to medication! A japanese epilepsy medication affected my thyroids [no joking!] making my voice go up a couple of octaves! There is always the chance that a person might build up a resistance to their medication, then get a change, everybody is different, so are types of epilepsy, and the way epilepsy affects everybody differently, the cocktail of epilepsy medication is attempting to reach every patient. I am just on fycompa, with lamictal, makes me tired all the time, [I find that all the epilepsy medication has made me feel slow and tired, but that is just me!] but not as lethargic and shaky as the epilim! If they work, stick on them, especially if they have for a long time! Two years ago I was taking 9 pills a day, not just for epilepsy, other 'complaints', I am now on three! BLISS!!
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