Lived Experience Forum

[BlueBay]

Thinking of you @greenpea ❤️❤️

[destructive]

@greenpea i have periods of amnesia and had some neurology testing maybe 2 years ago now but the tests were actually because of jerking symptoms. I'd never thought of the niero stuff and memory being connected. My initial eeg was abnormal - they said it was odd, slow like as if I was 90 or something. And had some increased pressure on my brain in MRI so they re did the eeg and did a lumbar puncture both then came back normal. Was so odd. Were you still going about usual business during those 3 hrs. Can be very stressful not to remember things I know.

[outlander]

are you not allowed to drive with epilepsy? @greenpea even if its managed well?
hopefully you can get in for an mri soon so you can get some proper answers, maybe give the centre a ring and ask if theres an earlier appointment..

[greenpea]

@destructive  Hey destructive apparently I went into my sons room to get him up for his carer .... I cannot remember doing this :o! I cannot remember getting my shoes on for the trip to hospital or all the tests the operator did to check for a stroke .... it is completely blank ..... worse than blank just isnt there at all.  Apparently my daughter asked me a question something like "where does your daughter live?" and I said "here" only to be told she had moved out months ago ..... apparently I thing said "Oh this isnt good" .

 Did you realise you were losing periods of time throughout the day? Is it an epilepsy thing that you have or something else? were the docs able to give you a definitive diagnosis? Are you able to drive?Sorry for all the questions. I am just so confused . peaxx

[greenpea]

@outlander  Hey outlander I cannot drive until the docs know what has been happening. If it is uncontrolled epilepsy then I cannot drive :o! The thing is I am already on a huge amount of epilepsy meds for mood stabilizing so I would be amazed that the amnesia was a seizure. I dont think they could put me on any more of these meds would have to change them.I have asked to be put on a cancellation list so you never know your luck.

Hope you are doing well. Always in my thoughts. Love peaxxx

[greenpea]

@BlueBay  Thanks for your care and support BlueBay I hope you are doing well. Love peaxx

[destructive]

@greenpea basically in the end they didn't know and I guess because it was the public health system they just discharged me and said come back of it gets worse, the jerking that is, not the amnesia. I actually didn't think to mention the amnesia because I think for me it's dissociation. I know from time to time I have done some strange things but nothing worthy of people thinking I'm having a stroke. I doubt people would even notice, I just know I don't remember. I was not meant to drive when they were doing the test although no one told me until after but once they discharged me they said I could. Also I do know someone with epilepsy and when they stable on meds they can drive. 

I hope you get some answers soon. I know I was disappointed when the second results came back unclear just because you want to know what's going on.

[greenpea]

@destructive  Thanks destructive really appreciate your perspective and help. It is frustrating not knowing what is going on will keep you all posted and hope that my thread will help others who have similar experiences in the future. peax

[outlander]

hey @greenpea just wanted to check in to see how your going and if you might be any further in getting an answer?
sending love and hugs

[greenpea]

@outlander  Hey outlander find out this Friday :).  Was talking with my son2's psychologist and apparently there are huge waiting lists for neurologists where I am .... like months long so maybe school leavers should look into neurosurgery as a career. Thank you for your care. You are a lovely young woman. peaxxx