Hi everyone. I really hope someone may have a similar experience to me as I'm completely lost.
20 of my seizures have happened at work when I've either been leading a meeting, on a phone call or having a very detailed conversation.
I always have a De ja vu aura before, but I have no idea why it… read more
Having joined this site i've learned a few things:
That as bad as things have felt at times for me - I have it easy by comparison.
My recent Grand Mal seizure episodes are: The last one was early October 2018, the previous episode to that was at end of November 2017, & the previous episode to that was at end of July 2011. I am able to hold down a full-time job no problem... By comparison to people who suffer the same Grand Mal seizures i do on a daily basis, suffer depression, are unable to work etc.
I choose not to drive (i don't trust myself & i don't think i could live with the consequences if i killed someone). I suffer Grand Mal seizures, i also suffer bad doses of 'Brain Fog' & Dejá Vú as well as what i've always known as (T.O.T.T.S) 'Tip Of The Tongue Syndrome' which is actually known as Presqúe-Vú.
I'm always struggling to find words that i already know & know that i know but can't for the life of me at that moment recall them. Not to mention dodgy short-term memory especially for things like 'numbers' or 'people's names' which given that i meet a lot of new people through my job makes it nigh on impossible to do - Very Frustrating.
I only had deja vu prior to one grand mal seizure my frist tonic clonic in 1985 when I was 18.
I never had another seizure again until I was 39.
Someone left this list here and I copied it to share.
People, with epilepsy, suffer from what are collectively called the “Vus” (voos).
Every one of us endures the vus to some degree and it can be made worse by our medications.
First there is “Deja-vu” (day jah), the feeling that one has experienced something before.
Then there is “Jamais-vu” (jah may). This is the feeling that a common experience is completely new.
This could be like forgetting (about 30 seconds) how to tie your shoe.
Then there is “Presque-vu” (presk). This is the inability to find a word, (or part of a word) for a moment.
Everyone suffers these to some degree, but people with epilepsy feel them far more intensely.
Personally, I suffer from Presque-vue.
I have auras but somewhat different then the some I've read. When a seizure is coming I get a weird feeling in my chest and everything seems unclear and it makes it hard to concentrate. If it happens after I've taken my meds then I tell whoever I'm around and I find a nice quiet place and lay on my side move anything I could possible hurt myself with and I turn off all the lights close my eyes and wait for it either to go away or happen. Sometimes when a granmal is coming I'll studder or have a hard time talking. Or feel like I'm constantly nodding out. My seizures are violent and I always try to get up. It's the worst feeling. I take 2,000 mg of Keppra daily.
I have complex partials when I'm at work. I'm still in process of trying to get them under control AGAIN. I can be concentrating or sitting at home watching tv and they happen. Seizures can be caused by stress, sleep deprivation etc. Epilepsy is what it is. I'm just thankful I have a career /job that is understanding. I have auras too like you. It gives me a few seconds warning. I do believe the best thing we can do is continue to work (if we can) because I've been at home not working and it causes depression in me. I need to move, work, continue living or it's upsetting. For me anyway. I'm now on Keppra, Vimpat, and Aptiom has been added. It's so frustrating, but hopefully your doc will work with you to try a combo that works without causing bad side effects. Stay strong:)
It took 5 years for me to get a diagnosis despite several sleep deprivation eeg’s and Mri’s. 3 neurologists said I had transient global amnesia, it was my GP who was right all along. At this time I was having absence and partials but did not know what they were at the time, we just knew something was wrong.
After the diagnosis in 2009 and seizures became worse I had many TC’c and yes with the terrible feeling in the stomach sometimes warning me it was about to happen.( but you cannot stop it like some people think you can, how I wish I could) - but they happened all over the place unfortunately, not just while awake.
I only got a diagnosis because I got the 4 day continuous EEG which showed seizures in my sleep when I thought nothing had happened during the 4 day test. Without boring you with the whole story of meds, surgery, employment, isolation, depression- epilepsy it seems is no straight line, from either a personal or medical perspective- the neurologists do not always get it right. So believe in yourself.
I have RPA hospital in Sydney to thank, and there specialist epilepsy clinic.