My tic disorder 2007-05-13

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

With a couple exceptions, it's not dangerous, but it can be disconcerting if you've not seen it before and/or don't know what's happening, so this will let you know what to expect.

Unless you spend a lot of time with me, it's very unlikely you'll need to do anything at all about this; I generally have a few minutes' warning and take care of my own needs. If I do need something, it's usually very simple. The only part that's likely to be frustrating is communicating with me without a computer present if my voice goes away.

It can last anywhere from a couple minutes to several hours. I usually have an approximate idea of how long it'll be.

Primary triggering factors:

  1. I'm low on water or sugar
  2. I'm stressed, exhausted, or very relaxed
  3. I'm thinking about the twitching
  4. Random bad luck

What might happen (from more to less likely)

Symptom What to do (cumulative)
  • hand tremor, especially right side
  • arm muscles, especially right side, twitch or clench in place
  • head/neck spasms, moving my head down and right
  • facial muscle twitches, e.g. muscles around eyes, cheek, mouth

Relax. It's happened many times before; it can be painful, disturbing, or frustrating, but I'm used to it.

Don't attract attention to it; keep the situation calm and simple and focused on other things. Stress just makes it worse.

This happens daily and is usually not noticeable.
  • difficulty standing, doing tasks requiring both hands (e.g. opening bags and jars), etc
  • muscle pain (from cramping)
  • flailing motions with right hand when trying to manipulate tools ("intentional tremor")
  • rigid, prolonged contraction of arms or hands, especially right side

Simple help with difficult tasks would be nice.

If it looks bad, check if I have had water and sugar, and help me get / consume it if needed. There should be a tube of sugar pills in my bag.

Only give things to my left hand.

This happens once every couple weeks or so.
  • I stutter, slur, can't speak above a whisper, or can't speak at all

I can still hear you just fine.

Use ASL or writing/typing to communicate if my voice shuts down. I can usually type much better than I can write.

Check if I can whisper. I can also mouth without any vocalization, but that's usually harder to understand than another method.

This happens once every couple weeks or so.
  • I am unable to breathe for up to a minute (because both sides of my neck clench) and possibly have a panic attack
  • my resting pulse is >150 bpm
  • severe light, sound, or touch sensitivity
  • I take more than 30 seconds to respond to questions or requests

Ask what (if anything) I need. I am almost certainly completely conscious and able to hear you just fine, so please just treat me normally. I can communicate any other needs.

Monitor me to ensure it doesn't get worse and any needs are met, but don't call 911. Do call Brown or Alex if there is any doubt; their numbers are on a card in my wallet.

Especially if I'm not communicating well or having difficulty moving by myself, check if I need different environment (e.g. less light, more/less warmth, less noise / people, etc).

The asphyxia happens once every couple months, on average, and while very painful is probably not actually dangerous. The rest is rarer.
  • my resting pulse is >200 bpm for more than a minute
  • I am unable to breathe for more than a minute
  • I have gone completely limp and am unable to swallow, move my arms, etc

These symptoms are the only potentially life threatening part of the tic, but also thankfully extremely rare. (I.e. once every couple years)

Call 911, Brown, and Alex immediately, and use blinking-based communication (see below) if needed.

If I go limp, move me onto my side so that I am not in danger of choking on my saliva and do not leave me alone.

Information for medics

This is not a seizure disorder. I have no known allergies. For spasms, IM benzodiazepines (e.g. 1-2 mg lorazepam) are reasonably effective, and pot (where available) is extremely effectivez. For atonic seizure, I don't know; probably the best you can do is just to monitor airway.

There is a card in my wallet that contains the phone numbers of my doctors and health care proxy / power of attorney holders. Call them if needed. Alex and Brown in particular, in addition to having broad legal authority to make any necessary decisions on my behalf, have significant experience dealing with this and will probably know whether something is normal for me or not.

Blinking communication

2013-10-02: I'm currently working on a more sophisticated system. Let me know if you're interested.

In the very rare case that I am unable to communicate in writing, ASL, or typing, ask me to switch to blinking to communicate, like in locked-in syndrome.

  • 1 = yes
  • 2 = no
  • 3 = wrong question
  • 4 = I don't know
  • 5 = spelling mode (ternary search)
    Start in the middle of the alphabet. Ask about a letter. If wrong, ask about the middle of the new range.
    • 1 = earlier in alphabet
    • 2 = that letter
    • 3 = later in alphabet
    • 5 = break out of spelling mode
  • 6 = I need more information
  • continuous blinking = requesting attention

Try to stay patient. This is an extremely slow and frustrating method of communication even for simple things, since you basically have to guess what I want to communicate. Fortunately it's not needed much.