Hi Everyone

[FNDAction]

Welcome to our community for everyone diagnosed with FND and NEAD and their carers, family and friends. Please do read our community guidelines before posting

[DALLYSALLY]

Hello everybody. I'm new to the group. I've been suffering with FND for ten years originally diagnosed as chronic migraine. I hate these horrible symptoms that cause me extreme headaches, speech problems, left sided. Weakness, balance and co-ordination, dizziness, with walking and sometimes blurred vision and at worse times non-epileptic type episodes followed by total left sided paralysis and loss of speech. It is a pity that there is no treatment offered apart from offered CBT and medication originally given to stop migraines occurring called topiramate. Anyone else take this or find anything else helpful?

[Yoggy1 in reply to DALLYSALLY]

Hi there, i have similar symptoms to i was diagnosed last march after being treated for migraines i have left sided weakness balance issues tingling and memory issues and get names and sentences mixed up ive been waiting for cbt since last august and ive been told itl b another couple months before im seen, these symptoms are horrible and you just get left to get on with it, i also get a lot of fatigue. Where you told to go on neurosymptoms.org its a very good informative site. Hope you do ok.

[DALLYSALLY in reply to Yoggy1]

Hi to you too. Sounds all very familiar.. Yes that site is informative, it's a shame it doesn't really go into helpful methods of relief, maybe I need to look again. I found the cbt helpful in some ways to talk about some personal issues but am being discharges as he thinks he didn't know how helpful it's been and causes me more pain and stress by going as have realised last year that hospitals and consultants could be a stress trigger for my FND, and were hospitalised after 2 appointments. Hope you get your appointment soon and find it useful.

[Jodelights]

Hi everyone. I'm new here. Just been diagnosed with FND by neurologist in Jan. Have suffered chronic migraines and cluster headaches for the last 8 years. I have completely lost all sensation over the entirety of my body, along with changes to my sense of taste and smell I also can no longer sense when I need to empty my bladder so I self catheterize. I lost my job because of my health and was hoping when I got a diagnosis I would be able to return. I also have Fibromyalgia, SAI, Joint Hypermobility Disorder, it was thought I had carpel tunnel as have continuous pins and needles in my hands which drives me crazy, but no, it's down to this awful FND. I thought I would be so pleased to get a diagnosis but I'm not! I'm totally fed up......