Recently Diagnosed

I have recently been diagnosed with FND and I'm really struggling to cope with it. I can't do anything I used to without making myself feel worse. I get a wide variety of symptoms, the worst being headaches and migraines, functional dystonia, non-epileptic seizures, speech problems and more recently sleep disturbances... I just wanted to talk to people who suffer from similar symptoms. I know I'm going to have a long recovery ahead of me, and I've got to take it one day at a time, I just feel so alone with this at the moment. if you have any advice or want to share your story I would be very grateful.

9 Replies

  • Hi Amy, so sorry that you feeel so alone and struggling, I know how you feel. I have sleeep disturbance, weaknes down one side, falling and need a wheelchair to go out. Go to the FND website, there are lots of [people all inthe same boat as you, talk to them they will help you as well. Hope this helps hugs to you, tsake care. I am hnere for you if you would lilke to talk

  • Thank you for your response, it means a lot.. I've been doing so much research recently just trying to find anything that I can do to help myself get through this. Thanks again x

  • I was diagnosed in May last year and have been on Amitriptyline ever since. I find it really helps with the headaches, migraines, I now sleep very well and find that without a constant day in day out headache and a good nights sleep I can cope so much better with the other symptoms. I not saying they would work the same for everyone but it helps me enormously. The blip I have is any other mediation I take interupts with the Amitriptyline and before I know it I am back at square one. I was very lucky to get an early diagnosis. I still have days where my word placement is dreadful and can't think about the simplest of tasks and feel so tired I don't know what to do with myself but I do try and have a normal life aside from FND. You are not alone there is more of us than we realise......they just don't know it yet!

  • I'm glad you've found something to ease it a little.. I have been taking propranolol to help with migraines and it seems to be doing the trick; but like you I have a constant headache. A normal life is hard, I'm currently off work and not dancing and sometimes can't mover around the house, but on my good days I am making the most of it. Thank you so much for your reply x

  • Hi, Please read some of my other posts. You are not alone. Almost all of what you have stated you have I have. It has been a very long road. Fifteen Years now. I am almost completely controlled with meds. I still have breakthrough symptoms, like last night a dystonic storm, what you call non-epileptic seizures, lasted for hours. My symptoms started after a brain surgery. I have dystonia, and possible fnd type symptoms was added last September when I was unable to move my right side. My sinemet was increased and the problems resolved. There are so many of this with the same symptoms that I believe it is still an undiagnosed neurologic disorder, that will one day come into light and given a more acturate name. I do have one question, did your symptoms start after an event such a infection, fall, head trauma? Or did they start with no pre-curser? Almost everyone has something that happened right before it started. Please let me know, this seems to be a common thread, and may be helpful for all of us. Pray your having a good day, God Bless, Cathy

  • Thank you for your response, I've been reading through other people's posts and doing some more research just to get my head around this... I have also been thinking back to what may have triggered in, as the neurologist did ask me a similar question... at the time I couldn't give her an answer, and even now I struggle to think back, but the only thing I can think of is that I have suffered with glandular fever multiple times in the last 4 years... whether that could trigger it or not I'm not entirely sure. I will keep thinking on that though, there may be something that I'm missing or overlooking x

  • Hi Amy, I too have been recently diagnosed with FND, and feel so alone, I have also got Mental Health problems which isn't easy to live with on its own. aswell as bladder and bowel difficulties, no support from my family, but a good, caring man in my life and neighbour. So i do understand how you feel, main thing is to have a understanding and good gp like mine. She is wonderful.

  • I'm sorry your suffering too, this just isn't very pleasant... I have suffered with anxiety and depression, but I'm pretty confident that I have a hold on that at the minute, now I've got this to deal with and I understand how difficult you must be finding it... im lucky in the fact that I have a lot of support from my family and friends and also my gp. As much as they try, they still don't fully understand though.. x

  • Hi. I was diagnosed about a year ago and that seems to be it. Even the neurologist who diagnosed me and was going to see me in 6 months hasn't been in touch. I tend to have stroke like symptoms and have ended up on the stroke ward several times, and gone through an MRI of my brain at least twice. My face starts to get pins and needles which spreads across the left side , then down my arm and eventually the whole left side. I have no use that side, speech. Is slurred and then I sleep, unrousable, for hours. I have probably left some out, but I'm so pleased to have found this site that t it h all come tumbling out! Its awful reading about everyone else's problem s but in a strange way its so good to Know that I'm not going bonkers and there are other people who understand. Please reply if you can and I'll do the same. My name is Nicky, and I would love to chat

    Bye for now


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