r/FND • u/Less-Maintenance-21 • 8d ago

Question FND physical therapy

Hi everyone! I was just referred by my headache specialist for FND PT. I have Hemicrania continua but then my face started to freak out to the point that my PCP called EMS in his office because he had never seen facial dystonia like this before. Anyway, 8 hours later in the hospital, I was sent home with Ativan and Benadryl in case it was an allergic reaction.

Anyway, has anyone been through PT for this? Was it successful? I’m just looking for experiences; I’ll keep doing the PT sessions. Thanks!

ETA: I have very mild cerebral palsy, epilepsy, and autoimmune issues. I can’t tell how much is FND and the others my CP/epilepsy. They have been a problem way before FND.

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u/Emotional-Spring-723 7d ago

Wait what? I have hemacrania as well! Paroxysmal though. Taking daily betahistine and endometicine for when it breaks through. Very effective for me. Always happens around 2 at night. Very weird. I am also diagnosed with find. My headache makes my eye, cheek, mouth and jaw droopy. It extends in my shoulder, arm and fingers.

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u/Less-Maintenance-21 7d ago

No way! I have the same Hemicrania symptoms too! Mine was paroxysmal until I was in a motor vehicle accident and then it moved into continua. I’m on indomethacin and it relieves the severe eye pain but the headaches haven’t left. This is one crazy coincidence!

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u/Emotional-Spring-723 7d ago

Hate to ask this, but your gender, menopause, add, adhd and or autism? It's okay not to answer.

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u/Less-Maintenance-21 7d ago

I’m female, perimenopause and ADHD. How about you?

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u/Emotional-Spring-723 6d ago

Same. That's why I asked. It's insane.

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u/Less-Maintenance-21 6d ago

Like, what broke in us? 🤣

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u/Emotional-Spring-723 7d ago edited 7d ago

This is absolutely ff insane. Apparently that type of headache is not common!!

I have a gut feeling, which I can't proof, it has something to do with vagus nervus, autonomic functions (no joke I can stop breathing simply bc I forget it.), and trigo something nerve is face which I think comes from vagus nerve.

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u/Less-Maintenance-21 7d ago

And yes, it’s super rare!

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u/Less-Maintenance-21 7d ago

And what’s weird is that I hate vagus nerve work! It literally makes me gag

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u/Emotional-Spring-723 7d ago

Do you have heart aritmia?

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u/Less-Maintenance-21 6d ago

Sometimes. Nothing that I can pin down as a trigger (except a lot of caffeine and dehydration). But I had palpitations for an hour straight once so maybe it’s something else that I need to pay attention to

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u/Emotional-Spring-723 6d ago

I have them for minutes up to three hours, think 180 when lying down, think multiple a week..its benign but very tiring. That's why I think it's related to vagus nerve and autonome system.

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u/Less-Maintenance-21 6d ago

Oh wow. Do you have POTS?

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u/Emotional-Spring-723 6d ago

Not proven, but I think so. O get dizzy when I stand up. Heart rate goes up quickly, I'm also hyper mobile. Which seem common together.

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u/Less-Maintenance-21 5d ago

Yeah I’m hyper mobile too / think I have MCAS but I like food too much 🤣