Topic of the discussion
Posted on 06/11/2017 12:36
Hi everyone and welcome to this new discussion group about living with epilepsy.
I'd like you to share the stories of your first seizures in this discussion: how old were you? Where did it happen? Who was there to help? Were you diagnosed right after this first seizure?
Thank you in advance for telling your stories!
P.S. Don't hesitate to start your own discussions on the topics that you find interesting. Just click on the green button "Create a discussion", situated right under the title of this discussion group.
Beginning of the discussion - 23/11/2017What was your first seizure like? https://www.carenity.co.uk/forum/epilepsy/living-with-epilepsy/your-first-seizure-2037
Posted on 23/11/2017 16:51
14 - in Design Technology class. I had to concentrate very hard whilst drawing on a light box. The next one was a year later in Maths class where I had to complete some very complex calculations in my head. Both times first aid at the school called for an ambulance to take me to the nearest hospital. I was suspected to have epilepsy but no treatment was sought. It was not till I went to University at 18 that I had my diagnosis of Juvenile Myoclonic Epilepsy and started taking medications
Posted on 30/11/2017 11:09
Thank you for sharing with us @Qingyuan !
I invite other members to join in the conversation
Posted on 14/12/2017 10:11
Morning, my sons first seizure was in august last year in bed on his own he is 21 and this has not got any better definitely worse has ruined his life lost his job can't go or do anything as he has been diagnosed with gram marl/ idiopathic generalised epilepsy and doesn't have any warning signs either , I feel as his mum lost with it all it's been 15 months now and not getting any better I am so worried for him daily .... how do I see your replys to this please ?
Posted on 16/12/2017 13:46
16. Brushing my hair ready for school and I just dropped to the floor without any warning. I don't remember a thing to this day about that morning apart from waking up with a paramedic next to me. My mum dad and 2 sister's all helped me through. Big carpet burn up my face which for a teenage girl was a big deal...but now I'm an adult (27) you realize that a carpet burn meant nothing. Finally after 11 years I'm 1 year seizure free and feel like I can take anything on.
Posted on 20/12/2017 21:25
My first fit I was only young and my parents said to me it sounded like two cat fighting I was a sleep at the time. But I could hear everything that was happening around me. My last fit I have had I was 17 and I had 10 fits in one day. But now controlled with medication.
Posted on 25/12/2017 22:19
Hi my princess is 3 years old was diagnosed with infantile spasms .. she’s been sezuire free since 8months old .. she medicated twice a day .. she was born with it took 8mths to figure it out by doctors she had a sezuire while getting her needles , thank god! Or I would of been sent home once again and told it was cronic colic, she was admitted to hospital kept in for a few weeks bless her .. sezuires are at bay.. but hoping she will grow out of it.. I want to make people more aware
Posted on 26/12/2017 22:23
Ive had epilepsy sinse birth im now 25 i got properly diognosed at 7 i have a vns which unfortunately doesnt work and there removing . And im on 4 medications
Posted on 03/01/2018 16:12
Hi @Maisiemay , it would nice if you could share your treatment plan with other members in this discussion: Your Daily Treatment
Your experience could be of use to others. Thank you in advance!
Posted on 05/01/2018 21:45
i am 52 and have suffered seizures since birth which was put down to the cords being wrapped round my neck at birth and lack of oxygen to the brain.
i still suffer a lot however over the years the frequency has dropped , in 1995 I went into staticus and took over 40 seizures in a row and had to be put into an induced coma.
i have been put on many various medications over the years and nothing seems to cease the seizures totally however even although I was getting DLA recently changed to PIP for a lot of years PIP have now decided that I am cured and don't need assistance and never will again !!!!! So consultant at hospital and G.P don't know what they are talking about and a stupid little girl knows best I even lost appeal