Functional (neurological) Movement Disorder: Next steps?
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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Has anyone been diagnosed with Functional (Psychogenic) Movement Disorder? I have uncontrolled leg, arm and body movements and also now stutter when I get anxious and have an extreme startle response. The only thing that helps control the symptoms is 300mg of Gabapentin taken 3 times a day. I'm particularly interested if anyone has received treatment and if so, what was the treatment? The condition happened overnight after taking one Sertraline tablet.
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1 ReactionIs that listed as a possible side effect for Sertraline, or an interaction with Gabapentin?
I surely hope it resolves soon. It sounds very unpleasant.
Jim
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1 ReactionSertraline caused the condition, but Gabapentin controls the condition. Functional (neurological) Movement Disorder is not listed as a side effect of the medication, but I have found reports of people having similar reactions after having taken Sertraline. Anxiety and stress exacerbate the condition.
@wilmslow, welcome. 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 @kjaffee @imagine1 @amber3212 @purpleturtle @westoneorama and others.
Is this a new diagnosis for you? Is gabapentin helping?
@wilmslow Yes. There are a few people on here that have this diagnosis. I developed FND three years ago after a cervical fusion and discetomy. I have heard from physicians and through my own research that any trauma to the body or brain can trigger FND. There are many different symptoms under the umbrella of FND. Movement disorder, non epileptic seizures, temporary paralysis, pain, gait issues. These are all some that I have experienced, although I have some other issues as well, you'll notice many people have fibromyalgia or migraines with this condition. They seem to be connected. I am not a doctor, just a patient who has been to many doctors and hospitals. Cleveland clinic has a wonderful team if you can make the drive. I've heard about specialists in Boston and Philadelphia as well.
Good luck!
The Neurologists I initially saw at University of Louisville Physicians were very clear that there is no cure for FMD. Although I find that disappointing, I'm fortunate, in that right now the vast majority of my symptoms are controlled by taking 300 mg of Gabapentin three times daily. It doesn't always alleviate the startle response I get from sudden noise, movement or light, but overall, I lead a fairly normal life.
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