lilly

[cocoferraro]

I HAVE BEEN DIAGNOSED WITH NON EPILEPTIC FITS AND HAVE MOST OF THE SYPTOMS MENTIONED ON VARIOUS WEBSITES, I HAVE LIVED WITH THIS FOR FOUR YEARS AND NOW I UNDERSTAND WHAT IS WRONG WITH ME. I HAVE GOOD DAYS AND BAD, BUT MOST ARE BAD, I HAVE SEVERE PRESSURE IN MY HEAD, MY WALKING IS AFFECTED, MY MEMORY IS SHOT TO PIECES AND MY VISION IS SOMETIMES BAD, I CANNOT START TO EXPLAIN TO YOU WHAT THIS HAS DONE TO MY LIFE, MY HUSBAND AND MY ADULT CHILDREN. I AM 49 YEARS OLD. BUT I DO UNDERSTAND WHAT HAS MADE ME THIS WAY. IF YOU CAN COME TO TERMS WITH YOUR DEMONS, THEN YOU WILL UNDERSTAND, SORRY FOR THE WAY I TYPE, BUT HAVE BEEN TO HELL AND BACK. I HAVE A WONDERFUL DOCTOR AND AM UNDER THE MENTAL HEALTH CARE TEAM AND HAVE A BRILLIANT COUNSILOR BUT STILL FIND THIS A SHOCKING THING TO SUFFER FROM, HELPS TO HAVE A HOBBIE, MAYBE FACEBOOK ETC WHERE YOU CAN TALK.

[giltnane]

hi Lilly was diagnoses July this year and am finding it difficult to cope with the pain, tiredness' no medication as my gp doesn't want to give me any thing to make my headaches worst . at times my head feels like it's been squeezed like a melon. my hand are in fixed deform position on both hands have thumb and forefinger to use since 2012 different sensation all down my left side, deep ache through out my body problems with my bowel. limited mobility need to use wheelchair and stick, have stair lift and wet room to help me. I'm married with two children also 49 but feel 109!!! I am fed via ng tube as I can't eat enough, allergic to wheat , gluten, lactose lots of products. but the worst for me is the pain seizure's, and lost of voice. I lost my voice since February. I am being accessed whether I am suitable for inpatient treatment end oct, very worried what the future holds. can't see positive just negative. I want to be normal again be me not this moody un commutative ,antisocial person this fnd has change my life my personality and I hate it with as vengeance. I don't want to be like this anymore I have been ill for 5 years and it's taken all this time to finally get a diagnoses and node a carrot is dangled but I may not be offered help!!! what do I do if not helped ? what happens once your programme has finished one month won't be enough the community here in Essex is know as being rubbish for community support . sorry for the whinge but feel very isolated and useless. jill

[cocoferraro in reply to giltnane]

dont think for one minute that you are whinging, know exactly what you are going through. this disease, for want of a better word is very hard to understand, but just keep in mind that you can get better and that it helps loads if you have a very good GP, they can give you medication so that you do not experience any pain, thus you can get better without pain, email me at [e-mail], we can talk together, full marks to you for being able to type correctly as this is hard for me too, email me and we can speak, if you want to,, best wishes

[giltnane in reply to cocoferraro]

thanks Lilly will email you later thanks x jill

[EnglishIslander FND Hope Volunteer]

Might I suggest you both look at fndhope.org home page and join the Facebook Group for FND. I have been through most of what you suffer now but have managed to recover 90% through an inpatient program at the Maudsley hospital's Lishman unit, plus my own efforts to understand and helped greatly by the Fb group. Best wishes, Duncan

[cocoferraro in reply to EnglishIslander]

thank you for your help, i know the maudsley hospital well, and am glad it helped you, would very much like to speak to you more, its great for me to actually speak to somebody how is going through the same as me..... lifeline... please reply duncan.

[EnglishIslander FND Hope Volunteer in reply to cocoferraro]

Hi. I think you'll find the Facebook group extremely supportive and you'll find me there. Just at the moment I'm not active on the group, but you can message me. Are you involved with the Maudsley then? The Lishman unit is currently the main therapy/treatment centre for FND, although there are a few Physio inpatient programs, but not very long apart from a Liverpool(? Sorry, can't remember the exact place just now) one. By all means message me here, but if you belong to Facebook, perhaps private messaging there might be better?

[cocoferraro in reply to EnglishIslander]

I WOULD LIKE TO TALK TO YOU ON FACE BOOK IN PRIVATE MESSAGEING BUT TO BE HONEST WITH YOU I DONT KNOW HOW TO WORK IT, WOULD PREFER TO SPEAK BY EMAIL, IS THIS OK WITH YOU???? I HAVE LOTS TO TALK ABOUT AND THINK WE COULD HELP EACH OTHER, HELLLPPPPP, AM NEW AT USING THE COMPUTER, PLEASE REPLY.......

[EnglishIslander FND Hope Volunteer in reply to cocoferraro]

You're welcome to email me anytime. My email address is [e-mail]

[cathys20]

Hi Lilly and All, No demons here just my bran misfiring. Please take heart there is help. I was like you for two years before they started me on tegretol, backlofen and topomax. They had tried numerous things before that combination and nothing worked. Then it was like the lights went on when they got the meds right. I still have breakthrough symptoms but I so remember thinking where did my life go. God was faithful to me and I now live a very productive life again. The days when I am dysfunctional I just remember tomorrow is another day. I was in a chair for two years, unable to talk, seizure activity up to 20 hours per day, head feeling like the worst migraine/flu ever. My husband prayed for the Lord to take me home he couldn't stand to watch anymore. I believe there is help for all of us, not just the me's, All of us. I believe it is a Dr. who takes the time and listens and tries different things till something works. Maybe some have a conversion disorder, you said you know what you think caused this, then that will be the first step towards recovery. I had a brain trauma, that is what caused mine, I know there is help for each of us. I will pray for you Lilly. God Bless, Cathy

[cocoferraro in reply to cathys20]

THANKS CATHY, GREAT TO READ YOUR REPLY, GIVES ME HOPE, AM IN TOUCH WITH A COUPLE OF OTHER PEOPLE LIKE OURSELVES, BUT AM ONLY ABLE TO REPLY VIA EMAIL COS I HAVE NOT FIGURED OUT HOW TO USE WEBSITES AND FACEBOOK YET, PLEASE EMAIL ME AT [e-mail] AND WE CAN TALK BETTER IF WE NEED TO, NO PROBLEM IF YOU DONT WANT TO....KNOW WHO YOU FEEL. REGARDS LILLYXXXX

[cathys20]

Hi Lilly, I am actually out of town visiting grandchildren.my email is [e-mail]. Yes, there is hope!!! I remember in those first two years thinking even though I was only 39 i felt like an old woman, so ill all the time. I wondered where the me i use to be had gone, I so distinctly remember thinking, would I ever not feel sick like death again. It was so dark and lonely, even though I had my 4 children and supportive husband, I thought I would never be well again, like I was so close to death. Weeks would go by with thoughts and expression totally left out of my life. Couldn't talk, seizure activity all the time, I felt I would never benormal again. But then a Dr. Said he would try whatever it took to help me. I feel so blessed.!!! I was justlike you, I wish u could see me today much of the time I am pretty normal, please never give up, I believe there is hope for all of us. Write me anytime... Ask away.. I will not be maybe able to respond for a few days cause I will be on a ship for a few days, but I promise ill get back to you as soon as I can. God bless, Cathy