New here, FND and Panic Disorder and Concussions?

[keernic]

Hi, I only just joined this FND community and have been reading past posts. I guess I'll share my story but I also want to give kudos to all of your for persevering because I know FND can be debilitating and really effect our quality of life.

When I was 17 I sustained multiple concussions from competitive soccer and also got into a car crash. I was bed ridden and missed over a month of school and then sustained 2 more concussions in later days. This is when these symptoms started. I would be able to see but I would space out and I could not comprehend what I was seeing. I don't know how to explain other than I could maybe name an object in my head but that object had no meaning to me. The left side of my body would go numb and slight limp. It felt like my brain was physically attacking from the left side. Started slow and got worse over my junior and senior year. I would fall while talking and stare off into the distance. I had no answers and people around me made me feel like I was crazy. One thing led to another and a doctor just put me on epilepsy medicine. Turns out I didn't have epilepsy so that medicine really fucked me up. I stopped talking to colleges for soccer and gave up on that dream. Eventually the episodes started lasting longer, I was always angry, lead to confusion, had up to 40 a day during class and tests and soccer games. Then the panicking came in and I would hyperventilate, sweat, and all that jazz. Three years later I got a diagnosis but my therapist refuses to focus on it. I think it's because my panic disorder is probably more important seeing as my FND symptoms are not as bad as other peoples'.

Having this trifecta of FND, Panic Disorder, and Concussions leaves me feeling lost and scared for my future. These episodes come in waves now and usually are caused by stressful times in my life. The aftermath of these episodes stay with me and quite honestly my brain feels so stupid. Like its working at half the capacity it once had. Is it concussions, is it FND, is it Panic D?

No one in my life listens when I tell them my brain is slow. My memory fails. I'm in constant fear. Not even my therapist listens when I tell him I just feel more stupid.

[Van604]

Hi keernic. I was diagnosed 3 years ago but have probably had FND for 7 years. It started after I broke an ankle. I've done a lot of research on it and it's clear to me that 1. No one really knows what it is, and 2. There's a clear division between neurologists who (mostly) think it's brain related, and psychiatrists who think it's mind related. So basically, if you're dealing with a "mind" person, they believe your mind is making up the symptoms, so they think if you ignore the symptoms, they will go away. That's probably why your therapist doesn't want to talk about your symptoms. I know this sounds crazy, but they've been believing this for over a century and they just don't want to give up on the idea, even though modern scanners now show actual changes in the brain in FND. My brain definitely doesn't feel the way it used to, but my intellectual capacities are still there. They just seem harder to access sometimes. It's the same with my speech and movement. Stress definitely makes things worse, so I make sure I take time to relax and enjoy things. My condition has definitely improved since 2017, so don't give up hope. Your brain has suffered and needs time to heal. We wouldn't go running around on a broken leg, but for some reason we think when the brain has been hurt we should just ignore it and push on. I used to love murder mysteries, but my brain can't handle it right now so I'm sticking to comedies. It's a case of trial and error - I'm figuring out what makes things better, and what makes it worse. It's not easy, but you'll get there. Best of luck.

[keernic in reply to Van604]

Thanks for replying and sharing your story. It's been very difficult for me to find what helps and I think it's something that will just take time and possibly a lifetime to learn. I definitely know that my flare ups come when I internalize my problems and try to ignore them. Talk therapy helps with that so I imagine that will be a big part of my life. Unfortunately talking about FND is also a trigger as well as computer screens or any seizure inducing/ over stimulation visually. Part of me wishes I could better identify which triggers are FND and which are Panic Disorder, but I'm not sure if I'll ever get those answers. Especially if I don't have a professional willing to talk about it with me. I really appreciate your response and I also wish you the very best in your journey.

[Van604 in reply to keernic]

Have you tried journalling? Just get a piece of paper and let it all out. Some people find art therapy better. Or exercise. Whatever gets the emotions out. It feels like trapped energy to me, so whatever I can do to get it out. Sometimes I get up at night and literally shake it off!