Newly diagnosed with FND

Received EEG results yesterday . Neurologist finally confirms diagnosis of Functional Neurological Disorder (FND) with paroxysmal non-epileptic events. Being referred for CBT .

Anyone had same diagnosis ? Any useful information on how to manage condition whilst waiting for CBT appt would be appreciated.

TIA

[Greyknit]

Hi there Maynan, sorry to hear of your diagnosis - I too was diagnosed with FND (4 years ago) and understand how devastating it can be for a while, the main advice I can give you is to slowly pace yourself everyday and try not to overdo things. In a lot of cases FND is our brain/body’s way of trying to take us out of stressful or difficult situations after a period of trauma or injury (either physical/mental/emotional) which can either be quite recent or built up over many years. In my case it was the result of many years of emotional distress that eventually led to many physical symptoms appearing all at once after my brain said “no more!” Your brain needs to be given time and peace and reassurance that everything is ok - it has, for whatever reason, suffered a “software” problem and re-wired itself to behave in the way it is doing at the moment which can take a long time to improve and be sorted out again. Please have hope that you will get back to “normal“ or a much more manageable “new normal” - recovery is about trying to make your brain feel safe again, so it’s important to keep any stress to an absolute minimum (I know that’s not easy in the world we live in today!) and not engage the “fight or flight” system, which will only make things worse, mindfulness meditation can help (was sceptical of this at first, but it’s made a massive difference to my recovery!) along with trying to concentrate on calming, gentle activities and remember to be kind to yourself - none of this is your fault, the brain/body is an unbelievably complex thing - I (and my family and friends!) have been absolutely gobsmacked at how it can behave in such a way! It’s very important to soothe your nervous system as much as you can, and good support and help from your family and friends during this time will be very important too on your road to recovery. Try to stay positive, things will get better, particularly once you start with your CBT and learn new techniques to begin to help yourself. Take care, wishing you all the best xx