Hello lovely neuro-diverse people. I... - Functional Neurol...
Hello lovely neuro-diverse people. I found this interesting and would welcome your thoughts :)
Yes iv had migraine for 24 years and have moved to hemiplegia migraine , hospital stays, to FND, and now dissociative Identity Disorder.
Oh my days - I wish people would realise that migraine needs diagnosing and treating quickly so that people don't develop other neurological problems. And I find the word 'disorder' a little disrespectful although I understand that it's sometimes necessary for medical coding and service access. I hope you are getting great support from your medical team.
I have a Nuerologist app on 21st, after an Ambulance was phoned for me on Thursday.
That's good 
Hope s/he will be able to help you. BTW people with vestibular migraine report dissociative symptoms sometimes (which is hardly surprising cos our systems don't know where they are in space and it can feel like gravity has gone awol) and we've developed some coping strategies along with some input from the doctors in the group. Obvs what works for one person won't work for everyone but if you have any good tips for us that would be super-helpful. No rush, tho' xx
So, in theory, my migraines made me become what I am. Lovely. I can thank myself for becoming a broken human being that can't work at the moment and is almost never understood most days. I also should stop paying a phone bill.
It is not your fault you became unwell. It's genetics and a whole load of other things. Is blaming yourself empowering you? Poorly managed migraine is a massive problem and if the gender distribution was reversed it wouldn't be. Cracked people let in the light.
I get what you're saying but it's still my body's fault. It's frustrating having people push you to get a job and you can't work most jobs because your migraines involved to crippling magnitudes. Add speech issues and you're the perfect person to abuse on the job. It's frustrating.
I hear you, speech issues cause by temporary aphasia are a damn nuisance which is why I write more than speak (although I could speak for England if it was a Paralympic sport, on a good day). Ugh - those abusers need to get a life. Says more about them than it does about you but they probably have unmet needs too. Most good migraine associations are working to make our work environments better, in terms of suitable accommodations and respect for our neuro-diverse super skills. It is frustrating that it's taken so long (follow the money) but there are great change makers out there who love your body and your spirit, whatever shape your in. Is there something about you and/or your body that you love?
I haven't been avoiding this. I was just tired for the week. As I am now, there isn't much I like about me as a whole. I'm just thankful I can still type somewhat.
I'm thankful too, re the typing and many thanks for responding. I really feel for you because I get the impression you're a lovely person, currently trapped in a body that isn't able to play the game as well as it used to, which can be very tiring. If you get the chance, it might be worth asking about what's known as 'social prescribing'. It includes things like occupational therapy that can give you the chance to extend your existing motor skills (those you use for typing), to include things you used to be able to do and enjoy or entirely new things that give you a sense of adventure. They may also be able to help with any additional adaptations you need at home. And no one will be abusive in the process - quite the opposite, you will get treated with dignity and respect. As you should have been before under the Equalities Acts.One contact of mine whose fine and grand motor skills were damaged in a car crash, said that learning to knit was the best thing he did during his rehab. He joined one of those 'stitch and bitch' knitting circles ('we cackle non stop, it's wonderful') and is, at his own pace, writing a cookery book for 'people like me'.
I’ve been told part of my FND is chronic migraine syndrome, as well as a very wonky face that goes upwards on one side if I am anxious I’ve forgot what nerves in my face are doing it but it’s most of the day? I am currently seeing a mental health therapist once a week and taking amitriptyline for my head? Some days I don’t want to get up. I want it all to stop? Why would I do this to myself? The answer is I wouldn’t and neither would any of us on here!! I hope everyone finds the courage and strength to fight on but please try and take time for yourself whenever you can, love yourself no matter what. Sending hope and happiness to you all X
Westie_1 What I can't quite work out is where migraine stops and FND starts. I'm sure there's an overlap but I wonder what the clinical measuring sticks are and whether they have changed, over time. Totally hear you about not wanting to get up some days. When I was working people were being encouraged to take 'mental heath days' (aka Duvet Days and Personal Days) to keep the work/life balance healthy. But if we're unwell and do that we can be conceptualised as malingerers who just don't want to get well. *Sigh*
So that wonky face thing sounds like a superskill to me. Sometimes I can feel anxious and not really notice that I am. But your face tells you, so you know it's time to get into your life hacks that reduce your freeze/fright/flight stuff and ramp up those lovely rest/digest/repair bits. How cool is that??
Thanks for your encouragement You've made a good day even better for me x
