FND Awareness Month, AMA 🧡

how does FND affect you? how were you diagnosed? how did you feel about the diagnosis when you got it?

How FND affects me:
I have to wear sunglasses a lot because I have light sensitivity and sunlight can trigger seizures. I have to attend weekly CBT sessions which have really been helping me recover. I need to get 9 hours of sleep because if I get less than 9 hours of sleep, I have tics and seizures (which then cause me to be even more tired). I used to have slurred speech and sometimes not be able to move or talk, but this doesn't happen to me anymore. I used to have delirium (lack of awareness of my surroundings) and I used to cry and say I was scared for no apparent reason (I don't remember this happening but my parents told me it did).

How I was diagnosed:
My parents paid for a private paediatric neurologist because I was having seizures 4-5 times a day and we hadn't heard anything about my NHS referral for months. My neurologist was very accomplished in her field and managed to diagnose me without any diagnostic tests (and it appears that her diagnosis was correct, as CBT has been helping me a lot). My NHS referral came through and my NHS neurologist told me he also thought it was FND, so he wanted me to have an EEG done just to check. I haven't heard anything about the EEG referral and it's been months.

How I felt about the diagnosis:
I was confused, because I had done research on my symptoms and FND hadn't come up on any of my searches, but I suppose that's understandable because it's rare (hence I'd like to bring awareness to it). I was relieved as well, I guess, because there was nothing physically wrong with my neurological system. It wasn't damaged in any way. I was a bit nervous when I heard I'd have to go to CBT, because there's a lot of stigma surrounding therapy and my parents thought I was weak if I needed to go to therapy. Their opinion has since changed, though, because they've seen that the CBT has helped me not only with my FND, but my emotional maturity in daily situations.

I'm really sorry to hear your parents felt that way about you

What do you work on in CBT?

At the start, we (my therapist and I) figured out my triggers so I could avoid them if necessary. We also go through what exactly I was doing, thinking, and feeling whenever my symptoms flared up. That's how we found out I needed more sleep, because after nights with little sleep my symptoms were worse. We also figured out that certain situations cause stress for me and cause my symptoms to worsen, so we found ways for me to cope with my stress. It's made me a lot less anxious, generally. My therapist thinks I'm at a stage now where I can actually stop going to CBT soon, and only come if I need something I specifically want to talk about or if I feel like I need a chat. I've been seizure-free and tic-free for more than a month now!

Glad things are going well for you