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Memorys and me

Well I am struggling today started medication it working but I don't know anything at all I feel very low and upset my head is empty I had not been treated for the seizures for 3 years but I have nothing in my head I don't know what's going on I feel like a intruder in my own body and in my home I don't remember my life with my husband I only started meds about a week ago I only found out I am living with tbi toncillar ectopia and frontal lobe epilepsy I knew I was loosing my memory I told my neurologists but they refused to put me on treatment we finally got put on it but they never mentioned anything that could happen living with 3 years of untreated seizures.now I am so lost my brain is empty sezures sre changing my face is straight but my brain is empty can some.one talk to me please that's been through it many thanks I am scared and lost.

8 Replies

Hang on in there....you are not lost forever but amongst friends here. :-)

I don't have exactly the same experience as you have unfortunately had and hope someone else can be more helpful.....

Just wanted you to know that you are not alone......x


Thank you so much for your lovely message it made me me smile and thank you.xxxxxx

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I am new to this site after having a subarachnoid haemorrhage 23 years ago and then a stroke 3 years ago. My memory is one of the most troublesome things. I have tried many things to help improve it and have gradually learned to do things in a particular way which works for me. I have already found that it has been helpful to read and discuss with others some of my worries.

Don't stop asking for help whether on here or at home, one of the most important things I learned is who my real friends are and they are the ones that are patient with you when you do forget things and don't mind telling you the same thing over again when you ask the same question for the umpteenth time!

I hope you have family and friends who can support you.

Wishing you all the best. D😛

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Hi Gotmarried,

The feelings you have now will pass, I know its frightening and you feel alone and trapped but it will pass. Try and keep busy and take yourself out of yourself and it will pass. God how many times have I said it will pass think thats 4. Must be a record.

Have a peaceful and positive Friday.

Nick XX


Thanks for your your kind thoughts from Julie xxx


Hi Julie and welcome : )

I thought this site might be useful :


I am really lucky that motor seizures in my early illness ( suspected Encephalitis ) only lasted a short time and went away without the need for treatment.

So glad you are now getting the treatment you need and that seizures are getting under control. Many of us on here have memory problems and it can be scary and frustrating to realise that you have gaps in your past life / seem to have lost important events. I find that photographs and talking about things with my partner can sometimes jog my memory, if not , it is good to have someone else who can verbally fill in the gaps !

Short term memory is an issue with me too - I find writing things down essential.

I am now the proud owner of 2 notice boards and a fridge door full of post its ! You might consider contacting Headway directly for info and reassurance or possibly the Epilepsy Society ( as linked above ).

Kind regards,

Angela x


got married2012 hi im waiting to be properly diagnosed, mine are the result of a stroke in 2012.

    mine arent too heavy but i just want to sleep for hours after one.

      come back and tell me more about yours, a problem shared is a problem halved,



hi thanks for the message I have so much to live with my seizures are one of my problems getting people to help has been hard I had seen 4 neurologists they all said the same thing it was non epilepsey but I told them that I had a head injury many years ago but they chose not to talk to me at all not even tried any medication I was living on the edge every day I was having lots of seizures my symptoms had gone from mild memory loss to loosing all my memory even my wedding day the longer my seizures carried on the worse it got I was on my own having seizures they made me feel so sick dizzy angry everything effected me I was having seizures in my sleep my head felt like some one ran over it it was that bad I had no bladder controll I was livid because I was never believed never given a chance to be on meds I had really strong smells that triggered my seizures I have 3 conditions tbi toncillar ectopia and frontel lobe epilepsy I have no memory's I now live by the day we finally got them to accept that I have frontel lobe epilepsy but it does not take away the fact some one who has seizures should not be be left me and my husband were fighting to try meds but I was getting worse and worse I changed gps twice I am on my third one now the lack of care makes things so hard to get any thing done I have been on a journey I hope your story is better than mine thanks juliet2012


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