OK, so I promised I would write more about my experience with CBIT. CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don’t get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe.
One thing that’s helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn’t. We’ve had to make a lot of adjustments to the original CBIT protocols because paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT).
So we have had to get rid of that part competently,and also rearrange a lot of other things as well. With a lot of tweaking, though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication I’ve been on and the best part is NO SIDE EFFECTS!
So today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my junior or senior year of high school (about 3 years ago). What I’m going to do is I’m going to paste that list here and I’m going to cross out all the tics that I no longer have.
Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let’s see how many tics I’ve gotten rid of!
- Eye rolling to upper right corners
- Fast blinking
- Hard blinking/squinting
- Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
- Grimace with mouth combined with eye blink
- Pursing lips silently
Pursing lips to make a slight and quiet kissing soundLifting upper lipPouting lip- Slight raising of lips into fast smile
Sticking tongue outChomping teethOpening mouth really wide (looks like a silent scream)Twisting lips to the left or right side of faceEntire face squint (just-tasted-something-really-sour face)- Slight neck bend to left or right side
- Neck turning which results in neck cracking
Violent head/neck jerking forwardShaking head fast from side to sideBending head backward
- Shoulder shrugging, both at same time or one at a time
- Pulling shoulders inward toward sockets
- Cracking shoulders
- Jerking both arms fast outward in front of me
- Cracking elbows
- Stretching arms all the way straight in front of me slowly
Tilting head backward while taking in a sharp breath- Tightening muscles in neck
- Tightening muscles in arms
Arm contortions- Jerking both arms toward chest vertically pretty hard
Jerking right arm toward chest vertically pretty hardHitting chest pretty hard with right handHitting stomach very hard with right hand (sometimes so hard that I feel dizzy and start coughing and gagging as a result)Pushing hands against face really hardHitting inside of elbows with hands- Hitting things (chairs, laptops, desks, tables, anything in reach, etc.)
Hitting eyes/parts of face or head- Making fists with hands and clenching them
- Finger stretching and moving
- Bending hands at wrists fast
Extending middle fingerMaking guns out of my finger- Cracking knuckles
- Tightening all muscles in hands and fingers
- Tightening muscles in chest, throat and stomach so tight I am not able to breathe
Lurching neck forward- Tightening muscles in legs
Jerking legs outwardsStomping- Rolling ankles
- Standing up on tip toes
KickingDrumming on tablesKnee knocking- Separating toes
- Raising big toe
- Crossing over first two toes
Jerking entire upper body backwardFull-body jerking tics- Rolling neck
- Scratching entire body all over really fast
- Grabbing crotch area
Hitting back of neck and back with hands- Full-body muscle tightening, which causes me to slip down in my chair and hold the position
Rubbing feet together in bedJerking body upward in bed and just jerking all over the place in bed (fish-out-of-water tic)Screeching soundForceful “Huh” or “Heh” soundBird-chirping sound- Whistling
- Loud sniffling
- Slurping sounds
Gasping- Taking in sharp breaths/breathing tics
- Clicking in back of throat
Loud high-pitched noisesHigh-pitched tea-kettle noiseHitting bottom of hands together forcefullyHitting feet together- Forceful coughing
- Clearing my throat
- Grunting noises
- Air swallowing
- Biting my lips
- Licking my lips
- Picking my lips
Sucking in the side of my lip to make a pucking sound- Hiccuping noises
- Squeaking noises
Wow! And if I add it up….drum roll please…..I have gotten rid of about about 36 tics!! Now that’s not to say they’ll never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with 36 less tics! I’d say that’s pretty darn good!
The ones I am most happy i’ve gotten rid of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.
To be fair, I have added on some new tics since my junior year of high school that are not on the original list such as nodding my head forward, brilling (that’s what I call at least, but it’s when I make a sound like brrrr with my lips and also make a noise with my throat at the same time), a squeaking noise that I make when i’m also sniffing (my CBIT therapist and I call it the squeak-sniff), and some others, but all and all I am doing very well right now. I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.
I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It’s still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that I’m more independent with doing my CBIT homework/ competing responses. I will continue to update on how it’s going and if anything new happens with CBIT. :)
