Has anyone had to deal with a functional neurological disorder?

Hi, our now 42 year old daughter was diagnosed with FND 2 years ago. Until she got the diagnosis, she thought she had MS, seizures, epilepsy, Guillain-Barre, and a plethora of other scary diseases. She had a one and a half year-old and 6 month old at the time. With her diagnosis came some relief, which reduced a lot of stress immediately. She still has times where it flares, usually when she’s tired or under stress. She does believe that Neuro feedback helped her a lot. She also makes use of noise-canceling headphones to help block sound when it gets to be too much. She now has three children. Overtime it has become better. She did live in Tennessee for about four months and found that the lightning storms at night, flashing through the bedroom blinds, would cause seizure-like activity in her brain. She’s happily back in California.
Strange things like that still happen, but because she knows what’s causing it, it’s been easier to deal with. She has to come up with interventions that help her to get through those flares.

@randallshields56
I hope everything has been working out for you. It is good to hear you have a new life. I hope that I can come to terms with whatever is in store for me and accept the new life I will have to live.

@randallshields56
I hope everything has been working out for you. It is good to hear you have a new life. I hope that I can come to terms with whatever is in store for me and accept the new life I will have to live.

@jaberg Actually it is a new me without a lot of the old creeping in- have had to rewire my brain a few times to many in my past. never really gets back to the ay it was but to something i can accept and move forward. i have two routines and a kind of set exercises for each day- not new to exercises or pt or work in general i mix it up one day leg bands started at 10 pd wt and just bumped myself up to 20 pound bands. cut the reps back by two but know better now not to overdue. that set me back to the 10 weight band-took forever to get back to the 20. I do 100 sit ups on the side of the bed, then bands 3 days a week followed by3 days of leg strengthen regime and take Sunday off to rest body and mind. Ride stationary bike 10 miles daily some times to include Sunday. a roller wheel i just recently in cooperated into workout, that's one to be careful with because it can hurt you too easy. i may have a new life now but do the workouts to keep my body strong in case i have to do radiation or chemo again or even another brain surgery which i had twice already. rewire that time took me 9 months to get back to the now again terms- Always have to give something up or modify it to your level of desired goals. Only really good change is i have not had a seizure of late and am happy about that. starting over from scratch is all i am doing, this is like my 8th time of getting back on my feet and slow roll till i know i am almost where i want to be. Ps i turn 70 this year and am looking forward to it for a change. The old me hated birthdays and to much of the things i did to appease others. you have to look at it differently, your not loosing the 6 miles just going to get a game plan to regroup and try something that gives you the same feel the thrill. i cant sit on my keester for very long before getting up or doing something even for just minuets to change brainwaves to a break mode then back to something. Your not giving up just attacking things at a different angle to look into. Me i fight for the ground i lost and every little gain back is a new chapter to add to the cycle of life. my goals now are to get off some of my meds so i can get back a few things i had to give up. Hopefully something here can or has helped you in your struggles. Have a blessed day and feel good about your being able to make change, some people cant and i find that helps me knowing i still have the options. I'm out.

@mkk0124 Thank you for your reply.
My vision is getting worse; don't have trouble swallowing; have extreme weakness during my "spells", which start with Shortness-of -Breath (which comes on at any time w/o exertion, followed by total body weakness.
Have an appt. w/Mayo - JAX neurologist on 4/7/26 and will inquire about this.
Thank you. Bill

@randallshields56
Good to hear from you. I understand the struggles. Are you on any seizure medications?

I am 47 years old. Honestly, my motor vehicle accident when I was sixteen put me through a loop. I'd have to say I wasn't comfortable with my life until I hit my 40's. I had a routine that worked for me. Whenever I was in pain, I just ran more. It is probably weird, but running releases endorphins and hormones, and it made me feel good about myself, even though I would have regressed if I didn't run.

I know I am very lucky because most patients who are complex, for whom regular treatments don't work, don't get to see the right specialists for a year or more. I am just shy of 6 months post-2nd concussion, and the specialists are realizing my complex nature now. It has been a rough road, and I am tired, beaten down. Hopefully, I can look forward to going to Mayo Clinic Appointments now instead of dreading them.

I am happy to hear you are staying positive. I am too, and I know it may not sound like it, but I feel you can relate. Take Care and keep up the Awesome Work! At least spring is rolling around, and more sunshine will give us what we need (signaling the production of serotonin, which helps boost mood, and melatonin, which helps sleep, AND gives us the VIT D we need)

@jenniferhunter My Mayo-JAX Cardiologist has ruled out cardiovascular issues - that they are not causing my NESs.
The Mayo-JAX Neurologist treating my Parkinson's does not think that my Parkinson's is causing my NESs.
The EMU that I had in Feb. 2025 at Mayo - JAX Hospital, the Mayo hospital Neurologist's diagnosis was Non-Epileptic Spells, did not call them seizures.
I have not heard of Thoracic Outlet Syndrome but will ask the Mayo Neurologist who I have an appt. with on April 7 about it, plus ask about Cervical Spinal Alignment and request to have my Cervical Spine evaulated and tested for Thoracic Outlet Syndrome.
(Sidenote: regarding my symptoms, I have not experienced any fainting.)
Jennifer, I greatly appreciate your reply, help and the medical issues you mentioned that I could be tested for.
At the age of 84 and after three+ years of dealing & suffering with my "spells" and not able to do absolutely anything, I am desperate to find out what is causing my symptoms, find a treatment plan and have a "qaulity of life".

I have advanced MS my own body attacks, my central nervous system. I have lesions in my brain and spine, so I have spasms throughout my body I have my left side is pretty much I have no feeling on it. I'm wheelchair bound. I have chronic pain. I have it. It's it's not a fun disease.

It really comes down to what you want and can do. have started over too
many times to just give into life and its bag of garbage. I find that it
might be days, maybe even a month sometimes but something will change and
if it dont i try different corridors till something fits, lastly if I
really want it and can't make it I throw out the prayers and let everyone
know that I am praying for whatever change.