Its happening to me, a sense of unreal, since posting on AnthonyM question without this support there is nothing......

[rubikscube]

survivors support is everything albeit online, I am afraid, i do not go to headway, I do not go out socially as i have problems with audio/temporal lobe since my acute viral encephalitis. I can research from home and am waiting for mri on ear and temporal lobe the drugs I take do not help only give me side effects....I am sorry to be sharing all this for the first time but have reached a breakthrough this weekend, that is, I have stopped running from myself. So, I guess this is the start to my real recovery after 6 years of inner conflict.

Is sharing this of help to me or others or am I just rambling, I did state on AnthonyM's post that I was never brave enough to post a question, well perhaps this post is part of my new beginning, I will see if anyone responds, I am trying to build an inner strong core within myself.

[Dorsetcharlie]

You are a survivor and for this you should be very proud of yourself. You have made it this far on your own and now you have us, so things can only get better; we are all here if you need us.

xxx

[rubikscube in reply to Dorsetcharlie]

Thank you for your words of support x

[cat3]

Hello, rubikscube......seen you around and it's good to finally meet you. Well done for taking the first step,,,,,hopefully, this will give you the confidence to share ideas or concerns in the future.

I'm curious about your comment regarding your medication. If it has such negative effects, shouldn't it be reviewed ? Maybe this will happen after your scan ?

It sounds like you keep yourself busy despite your problems. I looked at your utube video on electromagnetic fields by the way......what a strange and interesting subject it is.

Hope to hear from you again. Best wishes, cat x

[rubikscube in reply to cat3]

Hello, its complicated, I have been grand mal free for coming up to a year now on the meds i take - but the symptoms now appear to be more isolated to one area hence the specific scan i am to have later this month - this is down to my own research, as i have found out it is only possible for the specialists to be able to do so much with their knowledge, the rest is down to us the patient to give our own insight into our specific symptoms as the brain is such an unexplored area of the body, and by me taking in my own research I have discovered that the doctors have been much more useful to me.

Yes, the neuro probably will reduce my meds at some point which is what my doctor wants as he agrees my symptoms do appear now to be more physical which is what i am hoping this mri will conclude but i must not get my hopes up too high! I am hoping that it will be a TMJ problem which was caused during my status epilepticus before they put me into a drug induced coma for 3 weeks.

As for my art installation work with sound and emf prior to BI, it is interesting that my studies went in this direction and i now find myself in this situation. I was about to embark on my professional career as a lecturer at our local college sharing my passion for sound and light in the field of art and film making, that very week.

I went to bed that night very excited at my new life ahead, and apparently went into seizures, all I remember is waking up in Southampton 1 month later, not even remembering my 2 year old son or the past 2 years of my life!

Well, thanks for listening

[cat3 in reply to rubikscube]

Please forgive my ignorance, but what's TMJ ? x

[rubikscube in reply to cat3]

Its a whole new can of worms! TMJ disorders is an umbrella medical term for the jaw in my case caused during the infection / seizures, displacing my jaw so now this whole area which is connected to my inner ear and temporal lobe which was the part of my brain damaged during the infection.

[cat3 in reply to rubikscube]

Like so many others, you have an awful lot to deal with on a daily basis, apart from having your dreams torn to shreds. But you have continued to persevere with your work and I applaud you for that.

I hope that talking on headway is helping in some way to relieve any isolation you may be feeling. So many of us are isolated inside our own heads !

In case we don't speak before then,Good luck with your mri ; I hope you get the desired results.

cat x

[rubikscube in reply to cat3]

Many thanks for your words of support x

[bikerlifestyle]

no question is too silly or insignificant, ask away chances are there is someone feeling exactly the same but may not want to ask. go for it

[rubikscube in reply to bikerlifestyle]

Its easter 2013 my time to finally hatch out of my shell and thanks to the support of my cyber friends i have managed to ask my 1st question on here. big