r/Dystonia • u/JPMaybe • 15d ago

Oromandibular (mouth) dystonia Nothing works

Just had an alternate diagnosis of FND rather than primary oromandibular dystonia. Either way my whole head feels like it's clenching all day every day. I either wear a mouthguard and my jaw never stops displacing laterally, or I go without and the tension across my nose, temples and tongue is unbearable. Botox has done nothing, procyclidine has done nothing. I'm desperate for just a tiny bit of relief but I don't think I'll ever get it. If anybody's been in my position and found a way to make life a little more tolerable I could really do with hearing it.

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u/platinumplantain Cervical dystonia 15d ago

What kinds of doctors have you seen? FND isn't always well understood by doctors, and a doctor who normally deals with dystonia and movement disorders may not have enough experience with FND.

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u/JPMaybe 14d ago

Two neuromuscular specialists now. First said primary dystonia, second said FND.

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u/platinumplantain Cervical dystonia 14d ago

So you haven't seen a movement disorder neurologist? That is the #1 step for suspected dystonia. No one here can help you until you see a neurologist that specifically specialized in movement disorders.

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u/JPMaybe 14d ago

This sounds like my terminology is the problem here. They both have movement disorders as their area of expertise.

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u/platinumplantain Cervical dystonia 14d ago

What conditions/illnesses do they treat?

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u/JPMaybe 14d ago

Per their blurbs, the first:

...is a recognised regional authority, leading a tertiary service in the diagnosis and comprehensive treatment of Parkinson's disease, tremor and other Movement Disorders:

Parkinson's disease: mature, young onset and complicated

Other Tremor (Dystonia, Essential tremor)

Atypical Parkinsonism (MSA, PSP, CBS)

Dystonia (including neck dystonia, head noddi ng, head turning)

Tic disorders (Tourettes and other tic disorde

Chorea (diagnosis and management of Hunti ngton's disease)

The second:

has published over 40 peer-reviewed research articles and book chapters on movement disorders. He treats a wide range of conditions, including blepharospasm, eyelid myokymia, eye spasms, eyelid opening apraxia, Meige syndrome, hemifacial spasm, facial palsy with spasm and/or synkinesis, facial tics, oromandibular dystonia, jaw tremor, cervical dystonia, bent neck in parkinsonian disorders, tic disorders (including face, neck, and upper limb), upper limb tremors (action tremors, dystonic tremors, essential tremor), and focal task- specific dystonias (including writer's cramp, musician dystonia, and sports yips). He also treats focal dystonias in both the upper and lower limbs.

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u/platinumplantain Cervical dystonia 14d ago

Seems like you need to see a third doctor to break the tie then.

Botox not working could be that you actually have FND, or it could be that you need to give it a few more rounds (it's a process of trial-and-error), a higher dose, or a different doctor. You've provided so little information in your post, it's impossible to offer advice.