u/Burnerihardly_knower

Hello! I’m 19 AMAB and back in January I started having a teensy tiny problem. Sitting down and standing up, I would have violent full body involuntary jolts. 12-24 times every 1-2 minutes, fully involuntary, slight feeling of buildup mentally. Sitting down it’s like dry firing a mighty sneeze, my whole body just kind of spasms. When I’m stressed, they get smaller, but the tempo picks up until I am continuously involuntarily rocking and that’s very distressing in its own right and self-feeding. When standing, I stumble back a step or two as though shoved or punched, but adjust myself automatically so as to not fall down. Sometimes when standing instead my knees feel week and i jolt and then sink a little bit and need to work a little harder to gain my balance and get up. I’ve only fallen down from standing tics when bumping into something unexpectedly, throwing off my body’s adjustment. Tics are incredibly rare lying down, and absent while moving, sleeping, and deeply involved/distracted by specific activities. No pain, no dizziness, no confusion, no memory loss, no audiovisual issues, nothing else out of the ordinary.

so, I went to the ER. Got checked out, came back with FND. EEG and MRI clear of anything unusual. urgent blood tests apparently clear. no drug use. Self-calming and relaxing can make them much less frequent. Daily sertraline (zoloft) reduces it to more like 5-12 a minute if even. And i’ve more or less adapted. Walking in place or pacing, swaying heavily in my seat, that kind of stuff can stop or make them much rarer, though either way i’m moving a lot and end up exhausted. interestingly, I have alprazolam (xanax) prescribed as needed for stressful situations and it fully eliminates the tics for 4-6 hours. My GP says he’s only seen adults develop strange symptoms like this in truly horrific situations. I’m secretly medically transitioning (through a doctor’s office; no DIY), so the whole idea of a possibly stress and trauma based condition seems like horses, not zebras to me. and my doctor said he couldn’t think of a normal condition that xanax would fix like that.

now, I’m just kinda left wondering what to do. Went to a neurologist, said I should see a psychiatrist. Went to psychiatrist, said I should see a specialist. My dad is a bit combative to the idea of relying on medication and really wants to push hard for a physical therapy specialist, thinking it’ll be a cure all. After looking at some posts about FND it’s made me a little bit more uncertain, though. It feels like the medical system is playing hot potato with me because they don’t really know what to do with me and it’s getting kind of tired. Anyone else have a similar experience or any input on what the right play is?

Hello! I’m 19 AMAB and back in January I started having a teensy tiny problem. Sitting down and standing up, I would have violent full body involuntary jolts. 12-24 times every 1-2 minutes, fully involuntary, slight feeling of buildup mentally. Sitting down it’s like dry firing a mighty sneeze, my whole body just kind of spasms. When I’m stressed, they get smaller, but the tempo picks up until I am continuously involuntarily rocking and that’s very distressing in its own right and self-feeding. When standing, I stumble back a step or two as though shoved or punched, but adjust myself automatically so as to not fall down. Sometimes when standing instead my knees feel week and i jolt and then sink a little bit and need to work a little harder to gain my balance and get up. I’ve only fallen down from standing tics when bumping into something unexpectedly, throwing off my body’s adjustment. Tics are incredibly rare lying down, and absent while moving, sleeping, and deeply involved/distracted by specific activities. No pain, no dizziness, no confusion, no memory loss, no audiovisual issues, nothing else out of the ordinary.

so, I went to the ER. Got checked out, came back with FND. EEG and MRI clear of anything unusual. urgent blood tests apparently clear. no drug use. Self-calming and relaxing can make them much less frequent. Daily sertraline (zoloft) reduces it to more like 5-12 a minute if even. And i’ve more or less adapted. Walking in place or pacing, swaying heavily in my seat, that kind of stuff can stop or make them much rarer, though either way i’m moving a lot and end up exhausted. interestingly, I have alprazolam (xanax) prescribed as needed for stressful situations and it fully eliminates the tics for 4-6 hours. My GP says he’s only seen adults develop strange symptoms like this in truly horrific situations. I’m secretly medically transitioning (through a doctor’s office; no DIY), so the whole idea of a possibly stress and trauma based condition seems like horses, not zebras to me. and my doctor said he couldn’t think of a normal condition that xanax would fix like that.

now, I’m just kinda left wondering what to do. Went to a neurologist, said I should see a psychiatrist. Went to psychiatrist, said I should see a specialist. My dad is a bit combative to the idea of relying on medication and really wants to push hard for a physical therapy specialist, thinking it’ll be a cure all. After looking at some posts about FND it’s made me a little bit more uncertain, though. It feels like the medical system is playing hot potato with me because they don’t really know what to do with me and it’s getting kind of tired. Anyone else have a similar experience or any input on what the right play is?