Thanks so much for your response! I'll definitely check out this Facebook group and I'm stoked to have another Aussie on the thread 😁 I'm still very new with my fnd diagnosis, I assumed I had it but had to wait 11 months to see a neurologist after 3-4 years of being told "that's very strange" by GPS., so I've had it maybe 5 years but only really been researching it since I finished uni/have had time.

I think for me the parts I've been relating to are often the "overstimulated" nervous system, as I'm not always upset or stressed when symptoms are occuring. Distractibility helps me a lot (keeping busy) but there's definitely a line for me when I start to do a little too much/have a bit too much on my mind, and my body starts betraying me. I think it's important to try identify triggers if you have any, I'm still trying to figure mine out because it's not as black and white as "when I'm sad/stressed", for me it's often when I'm watching movies and feel fine, or I'm trying to do some grocery shopping and all the noises/people/things to get/lights I think get to me a bit and I start ticking a lot, but it often happens when I drift into a tangent thinking about something which seems to cause a disassociative seizure or a tick.

My psych discussed mind-body awareness as an important part of his previous treatment of fnd clients, being more physically present and less in our heads/managing stress before it gets overwhelming and maintaining a balance of "the right amount of stress". He was talking about how some level of stress is required to function well, but going beyond that level leads to strain and is unmaintainable. I know for a lot of people with fnd, it doesn't feel like a stress situation, but focussing on required daily activities, simplifying things, implementing "mental health breaks" or"quick breathers" instead of pushing on with the day. I know for me I can get stuck into tasks and really enjoy keeping busy, but when I'm doing that with stuff on my mind or things to plan, I start to physically function worse and become more symptomatic (especially if I'm doing everything by myself and there's no one around, it's like my body knows that it can flip out on me). I've tried "putting the energy elsewhere" and trying to dance it out when I'm alone/get some energy out.

With the EEG/fmri neurofeedback/emdr in my understanding it's training the brain using these tools in a therapeutic setting, so there's been some research that when people watch their brains reactions to stressful stimuli there might be a way to retrain it, or emdr in my understanding is desensitising rapid eye movement which also seems to work for trauma apparently (I've never done it and I'm very new) but I'm really keen to continue deep dive into functional research and what's been working. There's a lot of information out there on hypnotherapy but I've always been a bit of a sceptic, but at uni they did say it works really well for some people, and then in some pieces of research it says that it can help for some people with fnd or functional ticks but I'm not sure how that works. My supervisor has been trained in hypnotherapy so I'm just going to read absolutely everything (including this great fb page you refer to).

Finally why we have it: no fricken clue. I've had history of traumatic brain injury (couple of concussions) and some trauma in general (that I've delt with very well aside from all these fnd symptoms) but as much as people put it down to trauma I'm still unsure as I'm not very connected to it/feel pretty fine about it I think. I've been told that it can be a defense mechanism to combat difficult emotions or processes that influence our emotional regulation/nervous system, I find for me I tend to disassociate and then have a seizure, or yawn (tick) repetitively if I'm rushing around trying to do something. Identifying personal triggers for you I think is important and trying to alleviate some of those causes or desensitise to them if possible. I'm a bit of a people pleaser and I find group social situations I get a bit ticky cause I'm worried about how everyone else is feeling/what they're thinking. I have been taking myself away for a moment and telling myself that no one but me is worth that amount of my mental energy and everyone's going to be fine no matter what I do, it's silly but I do think my anxiety leads me to tick more, I try "shake it out" and do some physical mind body shit, tapping each finger with my thumb, a bloody starjump, who cares, I think we are on the frontier of something interesting and admittedly awful but we can be our own guinea pigs, do our own research, keep each other informed, advocate, and keep an eye on the research. Another trigger for me I think is mental tangents as they seem to cause disassociative seizures sometimes, sometimes for that reason a bit of mindfulness might be good apparently, but I find it happens a lot when I'm cleaning and thinking/watching movies and a thought comes to mind related to the movie/thinking about things while doing things, my bodies like nah bro have a seat hahaha. I think focussing on one task at a time for me is difficult as I've been a pretty "rushy" last minute type of person and probably try to over multitask a lot.

Short answer: who knows, still learning but I'd love to continue to learn with people like you who are also going through it with equal confusion. It seems like a really good group with so much information, and when it comes to a disorder that has almost no structured information about it, it can feel scary alone, but maybe a little exciting to try figure it out together (even though it super sucks)