I have a neurogenic tic. That means that sometimes my brain causes my muscles to spasm, clench, or relax in problematic ways.

For the most part, it's not dangerous. The worst that can happen is that I asphyxiate for up to a minute or so, or stab myself with something I'm holding if my arm is spastic. That's fairly rare though, and although it can be quite painful or disturbing to watch, even the most severe cases have not been life-threatening.

More commonly, I may lose ability to talk clearly or at all, or to use my arms and legs normally.

Typically, though not always, I have a couple minutes' warning that it's about to happen, and will take whatever precautions I need by myself.

It's not a seizure, though it may look like one to non-specialists. Unless my resting heart rate is >200bpm, please do not call for professionals unless I specifically ask.

The best thing you can do for me is to remain calm, be supportive, and help me relax. Maybe offer me water, sugar, or pot and help me to move. I will be fine; I've been through it before.

Primary triggering factors:
* I'm low on water or sugar
* I'm stressed, exhausted, or very relaxed
* I'm thinking about the twitching
* Random bad luck

Minor symptoms: isolated muscle twitching, e.g. in arm, neck, leg, face. Possible stutter or slurred speech. Minor pain.
What you should do: If you notice (you probably won't), check whether I need water or sugar, or a reduction in any obvious situational stressors, to ensure it doesn't get worse. Otherwise, don't worry.
Frequency: avg 1/day, range 1/week to 20/day
Probable duration: 1-10 minutes

Low symptoms: stronger, repeated twitching. Probable loss of ability to use voiced speech; whisper still possible. Noticeable pain. Right hand tremors, impaired fine motor ability.
What you should do: same as above. Check if I need water or sugar. Use ASL, paper, or computer to communicate, or remind me to whisper (I often forget that I can). Give things to my left hand.
Frequency: 1 / 1-2 weeks
Probable duration: 15-20 minutes

Moderate symptoms: strong, repeated twitching. Loss of all speech ability. Significant pain. Significant impairment of fine and gross motor ability, significantly exacerbated when dealing with tools. Major tremor in right hand (enough to not be able to hold a glass of water without spilling it); left hand usually fine. Significant muscle weakness, possible inability to change position (e.g. stand or sit) without assistance. Probably able to walk unassisted once standing. Significant light sensitivity. Sensitivity to light touch (something I normally enjoy, but when twitchy can make for violently spastic reactions).
What you should do: same as above. REMAIN CALM. Do NOT call an ambulance. Help me move if I ask it. Turn off, redirect, or dim lights if I appear to be flinching from them. Give me water (left hand only) or help me drink if my left hand is trembling too much. Try to help me relax & be comfortable; it is something I can control but only if I have enough presence of mind to do so, so the best thing you can do is to ground me. Make spectators go away. Do NOT put pressure on me (e.g. by leaning on me, resting objects, etc). Get my sugar pill gives (they're in a small plastic tube) from my backpack and hand me a couple; follow it up with something more substantive (e.g. potato, cheese) so that I don't have a crash 15 minutes later.
Frequency: 1 / 1-2 months
Probable duration: 30-60 minutes total; 10 minutes peak

High symptoms: as above, plus possible loss of breathing due to bilateral clenching of neck muscles. Possible panic attack and/or thrashing as a result. Probably high light, sound, temperature, pressure, and touch sensitivity. Major motor impairment, especially right hand & arm; tool use probably extremely difficult. Full body spasms. Major pain. Garbled / mumbled ASL. Should be able to make some sort of yes/no response to questions; you may need to come up with some way for me to signal that. May have delays in response time.
What you should do: same as above, but more so. REMAIN CALM. If possible get me 1-2 mg of Ativan (lorazepam) or similar strong, fast-acting muscle relaxant (anything that ends in -pam or -olam should do). If available, offer pot (pref. using a water pipe); it helps better than the benzodiazepemes with fewer side effects. Try to ensure I don't need to drive for the next 6 hours or so (e.g. by offering a place to stay overnight, or a ride). Ensure that my environment has no bright lights, is lukewarm, soft, and relatively quiet; a blanket may help. ASK ME FIRST before doing anything.
Frequency: 1 / 4-7 months
Probable duration: 30-120 minutes total; 20-30 minutes peak; 20-70 seconds loss of breath

Severe symptoms: as above except worse, plus very highly elevated heart rate (180-230 "resting" bpm). Possible loss of ASL ability as well; may still be able to make some sort of yes/no response to simple questions. May have significant delays in response time. May be completely unresponsive due to being overwhelmed with fighting for internal control. May have extreme, violent sensitivity to light, sound, temperature, pressure, and any touch other than broad, smooth, and firm.
What you should do: same as above. REMAIN CALM. Get me 2-3 mg of Ativan (lorazepam), Xanax (alprazolam), or similar strong, fast-acting muscle relaxant (e.g. pot), as soon as possible. Most benzodiazepines (things that end in -pam or -olam, e.g. Valium (diazepam)) should work. I have no known allergies. I have pills but don't usually carry them with me. Do not let me drive for at least 6 hours after medication. If no meds available locally, drive me to an emergency room and make them give me 1-2 mg lorazepam via intramuscular injection; an ambulance is unnecessary and expensive, and EMTs or paramedics neither carry nor are authorized to use injectable benzodiazepines outside the ER, so they can't do anything for me. If I am in an ER, try to see if they can take EKG and EEG recordings so I can take 'em to my neurologist. In all cases, ASK ME FIRST and REMAIN CALM.
Frequency: 1 / 1-4 years
Probable duration: 1-20 hours


Atonic seizure symptoms: Completely different from twitching (above); an atonic seizure is when I lose nearly all muscle control and tension, i.e. collapse and cannot get up, move, talk, sign, swallow, breathe well, etc. This is life-threatening in one respect: I need to be moved onto my side, or I may choke on my saliva (becauase I can't swallow). Otherwise, it's mostly just a problem for communication, as I effectively have no ability to respond normally.
What you should do: Move me so that I am comfortable, well supported, and in danger of choking. Set up a simple binary system (e.g. "say yes"; "say no"); you may need to pay careful attention, as I probably will have to use something unusual to signal (e.g. eye gaze direction, brow movement, grunts). DO NOT give me meds.
Frequency: 1 / 1-2 years
Probable duration: 1-2 hours