Functional Neurological disorder next steps

Posted by rattlesnake @rattlesnake, Jan 4 6:03pm

I was diagnosed with FND after a years long search to explain my physical issues. Constant headaches and misery to the point of having to see a psychiatrist to want to stay alive. Prescribed Duloxetine, made huge improvement.

Now, 2 years later with quality of life 'adjusted', it is still unacceptable. Life is a still a continuous hangover.
Looking for help to restart my quest for improved QoL or coping. 46 yo male.

Timeline Summary;
2019 - started to always feel 'sick'. Fatigue, headaches. Bloodwork fine, improved my diet, started exercising.
2020 - got braces that set off jaw and face muscles. Life unbearable. Extreme migraines. Went down jaw/face/headache path, no treatments/medications effective. Had many MRIs, scans and tests of all kinds. No issues found. Eyes, ears, brain, spine, neck, etc.
2021 - Started having neck spasms. Went to Barrow for HA. No medication effective. More scan, tests. Diagnosed with FND by Barrow movement disorder. Started counseling.
2022 - Psychiatrist say stress/depression/anxiety, Duloxetine worked, tried many doses and combos. HAs mostly gone. Rest of symptoms remain. 80% improvement in QoL.
2023 - Tried more supplemental medications. Bupropion helps spasms some. Severe Fatigue, Modafinil helps
2024 - well here we are...

Symptom summary:
HeadAches (HA)
Nausea/dizziness
Chronic fatigue
Severe spasms (light and sound triggers)
Ears ring (both, days to years)
Depression/anxiety

Until 2019 I never had HAs, didn't know what anxiety was. Life was great. Now my main issue is chronic fatigue. I sleep well. I wake up feeling horrible almost every day. Can't think, function or hold head up. Some days I can barely drive 20 min to work. Some days I have to lay on the floor in my office. Afternoon/evenings are better. Going places and doing activities I (used to) enjoy cause anxiety for no reason with severe physical responses. About one week out of a month I have depression. In general, I don't have any good days, only bad or ok. I've been taking life one day or hour at a time for years.

My spasms started as only a head jerk left. Twitch to severe. Then both directions and on to other body parts. Triggered by sound, light or nothing. When I lay on my back my stomach spasms and may get a full stress response like someone scared the crap out of me. high heart rate, hyperventilate. Could be a few or hundreds over an hour. Riding in a car at night is worst trigger and I look like I'm having a seizure. Severity is much less now.

I also have an odd sensory sensation similar to dizziness when getting up quickly. Like eyes and ears stop working for a brief time, like a sneeze. Ear muscles contract, ring pitch goes up. eyes may blink or close, and my hands pop out like I might fall. Maybe neck or body spasm. It can be triggered by walking though a doorway as hearing reflections change, or nothing. May have none some days and hundreds others.

Can't be complacent with my conditions forever.

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@colleenyoung

Hi @kjaffee, I moved your question to this existing discussion:
- Functional Neurological disorder next steps: https://connect.mayoclinic.org/discussion/functional-neurological-disorder-next-steps/

I did this so you can read previous posts and connect with other members familiar with Functional Neurological Disorder (FND) like @rattlesnake @katcollins @rwinney @imagine1 @amber3212 @purpleturtle and more.

@kjaffee, it this a new diagnosis for you? What are your next steps?

Jump to this post

Hey there @kjaffee - how are you doing?
Have you or someone you know been diagnosed with FND?

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