Strategies for Tics: Non-Medication Interventions

NOTE: Below is a list of various strategies that help me when my tics are occurring more frequently. These strategies are things that personally help me as a person living with Tourette's. They are wroth a try, but I can't guarantee these things will work for you or help your tics calm down. I can tell you these things help to decrease my tics at times (not all the time, and they are not foolproof) but overall every person is different and something that helps one person might not help another. If your tics are getting to a point where they are difficult to live with or to control, the first thing I would recommend is seeing a neurologist. Your neurologist, psychologist, or psychiatrist should be your first line in treatment and suggesting interventions.
I hope some of you find these suggestions helpful! Please let me know if you try to implement any of them and how they affect you!

Distraction/ Focused activities- 

       Whenever I'm ticcing a lot, distraction and focused activities can help my tics get back under my control. Talking or telling a story takes up a huge amount of brain power! Ever tried singing while also saying the ABC's backwards in your head? It's pretty much impossible because the amount of brain power it takes for your mouth to form words is taking up too much space in your brain. The brain has less of an ability to misfire (aka tic) if your talking, engaged in conversation, telling a story, etc. Also focused activities like dancing, drawing, video editing, or playing an instrument takes up just as much if not more brain power. So, when my tics get bad I try to focus myself on something that will take up a lot of brain power.

Note: For vocal tics specifically chewing gum or sucking of sugarless cough drops can help to distract the mouth from tics! 

Sensory Toys-

   Sensory toys seem to help my tics. For me the kinds of sensory toys that help the most are ones that provide both tactile input and auditory input. So for example, I have a sensory toy that's basically a long chain of plastic blocks all connected. When I move it around in my hands I get both tactile (touch) feedback and auditory (sound feedback) from the clicking noise it makes. I also have quite a few others that give this dual feedback such as a fish that makes a popping noise and a chain of small wooden blocks that make clicking noises as well. Not sure exactly why they help, but they help lessen the tic urges in my body when I play with them.

Here's the website where I got most of my sensory toys (its a site for autism sensory toys and I found it though my mom because she works with a lot of kids who have autism, but most of the items on the site work great for TS as well!): http://www.autismshop.com/games-playthings/games-playthings-fidgets-sensory-items/?sort_by=position&sort_order=asc

Here are a few of the sensory toys that I have and find helpful:

Tangle Relax toy :No auditory component, but great for tactile input
What Zit : tactile and auditory input (clicking sound when blocks hit)
Wacky Tracks  : great for both tactile and auditory input (this one is my favorite!)
Roller Fidget: great for tactile
Pop Animal: fantastic for both tactile and auditory
Colorfall: Great for those who might like more visual input

Sensory Soothers -
 
Milk/ Soothing Drink- Not sure why but drinking milk or another soothing drink when my tics are bad really helps me! Cold milk usually works best for me, but cold water to a lesser extent can help in a pinch. It really depends on the person though. For me I find the plane milk the most  soothing, but for something a little fancier, try this great little recipe!
    Vanilla Milk:
 
    - 2 cups 2% milk
    - 1 tablespoon agave nectar    - 1 teaspoon vanilla extract  
Place all ingredients together in a mug or pitcher and stir well. Then place the mug/ pitcher into the microwave to warm. Also it can make a nice frosty drink with a few ice cubes and a blender! 

Weighted Blanket- My weighted blanket really helps my tics calm down, especially for night time. The weight is helpful most nights, depending on my sensory needs that day. Some nights i'll really feel the need to have something heavy on me, other nights i'd rather not. I have to listen to my body that day and depending on how i'm feeling the weighted blanket can help A LOT! It calms my body down incredibly and helps me fall asleep faster. I ordered my blanket online though sensa calm, but you can also make them yourself them depending on your level of craftiness!

Where I got my weighted blanket: http://www.sensacalm.com 

DIY weighted blanket videos and articles:
https://www.youtube.com/watch?v=Qw_IzkB2Cz0
http://www.mamasmiles.com/sewing-tutorial-how-to-make-a-weighted-sensory-blanket/http://qualityplasticpellets.com/2013/01/04/a-warm-night-in-the-diy-guide-to-a-weighted-blanket/

Cold compress/ cold pack/ cold pillow pad- for me cold sensory input seems to help my tics, so cold compresses and a cold pillow pad I have both help. Here are some links to some items that are helpful if you find cold or warm compresses to soothe your tics as well.

Chillow - Memory foam cooling pillow pad, requires you to fill it with water, but i've had one before and it works well and is pretty inexpensive too. There are other products that are a bit more pricy but I think may work better to keep a cooler pillow.
Chilloh- Another brand of cooling pillow pad that's a bit more expensive but might work to keep the pillow colder than the chillow.
Therapearl - can be heated to be hot or hold and also can double as a tactile sensory toy! 

Changing the environment- 

For me, when i'm ticcing a lot it may be environment dependent. For example, I tend to tic a lot in classrooms, lectures, while sitting in an audience, when i'm in a quiet environment, a stressful environment, and also strangely enough while in the shower. So if i'm ticcing a lot, one of the first things I do is I assess the environment and ask myself, am I being triggered by something around me? Am I in an environment that would cause me to tic more? If so, and if I am able to, I try to change the environment.

For example, the other day I noticed that I started ticcing more and started to become uncomfortable because of this. I looked at the environment around me and realized that my tics may have been triggered because I was in a quieter and more enclosed environment. So I got up, walked outside in a more open and louder area, and my tics started to calm down. Later that day I was walking around a lot and started to get hot and tired, which started to make me tic more. I decided it was time for me to go inside and sit in the air conditioning which helped decrease my tics.

Also sometimes I start ticcing a lot, look around at my environment, and can't seem to find anything specifically that I can think of that would be triggering me. In this case, I get up and change the environment anyway because even though i'm not able to discern what seems to be making me tics worse, changing the environment will tend to help to some extent regardless, even if that means just getting up, walking around for a while, and then coming back.

Putting your body in a different position- 

This may just be unique to  me,  but something that helps me when i'm ticcing a lot is changing the position my body is in or putting my body in an "different" or "odd" position. So if my tics are bad while i'm laying in bed, if I put my pillow on the opposite side of the bed and lay backwards for a while this will help my tics. Or if I hang my head off of my bed so that i'm essentially upside down this will also help. Whatever I can do to get my body in a different position seems to help. I'm not sure why this helps but my best guess is that it gives my body different sensory cues and serves as a form of proprioceptive sensory input. I'm also not sure if it will work for anyone else, but it might be worth a try.

Also giving your body different sensory signals in general may be helpful! Some other ideas of giving your body different sensory signals than those when you're just sitting or standing are doing yoga, running, jogging, jumping rope, fast walking, swimming, playing a sport, dancing, swinging, yoyo-ing, or whatever other crazy (or not so crazy!) bodily activity you can think of to get your body active and engaged in movement!

Decreasing frustration/anxiety-

When i'm ticcing a lot, sometimes I get frustrated with myself and pretty anxious with the fact that i'm not able to control my body. Its pretty frustrating and anxiety provoking to not be able to stop yourself from doing something that's annoying, painful, and often times embarrassing. So sometimes with each tic i'm not able to control, I get more and more frustrated and anxious,  which in turn of corse makes me tic even more and it becomes a vicious cycle. I tic, I get frustrated and anxious, I tic more, I get even more frustrated and anxious, and then I tic much much more, and repeat. You can see how this might be a problem. 

Not many people know the emotional components that come with having TS. They see the tics, but what they don't see are the emotions that come with living in a body you can't always control. They don't see the anxiety, the embarrassment, and the frustration that comes with having Tourette's, but this side of TS is no less real and no less important to address than the tics themselves.

So whatever I can do to  decrease my frustration and stress level will help stop this vicious cycle and help to decrease my tics. This is another reason why distraction, focused activities, and calming sensory activities help to decrease tics. These activities help us take our mind off the frustration and anxiety that tics bring. Listening to music may also help.

Another thing that can help is talking to the rational side of your brain by using coping statements. I start out by telling the rational side of my brain "being frustrated and stressed will only make my tics worse"and giving myself self assuring and soothing statements such as "i'm just fine", "it's okay that i'm ticcing right now", and "this will soon pass, it always does". I give myself a little time to tell myself everything's okay, and then I move on to calming, focused, distracting activites to take my mind off the tics.

CBIT-

Cognitive Behavioral Intervention for Tics (CBIT) is a behavioral intervention for tics, it's non-pharmacitical, and is proven to be as affective or even in some cases more affective than mediation for tics. It doesn't work for everyone, and it's not a cure, but for some people it can significantly decrease the severity and frequency of tics. It worked very well for me, and I still use the strategies I learned in CBIT when I feel like I need to.

I still have tics of course, and I still have bad days, or bad weeks even, but overall my tics are less frequent and less severe than they were a year ago before I started CBIT. CBIT has worked better for me than any mediation has, and the best part is NO SIDE EFFECTS!

A lot of the behavioral interventions i've listed above are strategies I learned in CBIT. CBIT is not only about targeting tics with a competing response, but its also about learning how to manage your tics, finding strategies, and assessing your environment, your triggers, and finding various things you can alter in your environment to help your tics. The ideas of distraction/focused activities, changing the environment, and deceasing frustration and anxiety are all environmental components of CBIT that I have learned both on my own and with the help of my CBIT therapist. The competing response component of CBIT is important, but the environmental assessment is just as important as well!

You can read more about CBIT and watch videos on CBIT on the Tourette Syndrome association website here: http://www.tsa-usa.org/Medical/CBIT.html

CBIT for Tics (Part 2)

Okay, 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 #1 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 re-arrange 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 tic i've gotten rid of!

1. Eye rolling to upper right corners
2. Fast blinking
3. Hard blinking/squinting
4. Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
5. Grimace with mouth combined with eye blink
6. Pursing lips silently
7. Pursing lips to make a slight and quiet kissing sound
8. Lifting upper lip
9. Pouting lip
10. Slight raising of lips into fast smile
11. Sticking tongue out
12. Chomping teeth
13. Opening mouth really wide (looks like a silent scream)
14. Twisting lips to the left or right side of face
15. Entire face squint (just-tasted-something-really-sour face)
16. Slight neck bend to left or right side
17. Neck turning which results in neck cracking
18. Violent head/neck jerking forward
19. Shaking head fast from side to side
20. Bending head backward
21. Shoulder shrugging, both at same time or one at a time
22. Pulling shoulders inward toward sockets
23. Cracking shoulders
24. Jerking both arms fast outward in front of me
25. Cracking elbows
26. Stretching arms all the way straight in front of me slowly
27. Tilting head backward while taking in a sharp breath
28. Tightening muscles in neck
29. Tightening muscles in arms
30. Arm contortions
31. Jerking both arms toward chest vertically pretty hard
32. Jerking right arm toward chest vertically pretty hard
33. Hitting chest pretty hard with right hand
34. Hitting stomach very hard  with right hand (sometimes so hard that I feel dizzy and start coughing and gagging as a result)
35. Pushing hands against face really hard
36. Hitting inside of elbows with hands
37. Hitting things (chairs, laptops, desks, tables, anything in reach, etc.)
38. Hitting eyes/parts of face or head
39. Making fists with hands and clenching them
40. Finger stretching and moving
41. Bending hands at wrists fast
42. Extending middle finger
43. Making guns out of my finger
44. Cracking knuckles
45. Tightening all muscles in hands and fingers
46. Tightening muscles in chest, throat and stomach so tight I am not able to breathe
47. Lurching neck forward
48. Tightening muscles in legs
49. Jerking legs outwards
50. Stomping
51. Rolling ankles
52. Standing up on tip toes
53. Kicking
54. Drumming on tables
55. Knee knocking
56. Separating toes
57. Raising big toe
58. Crossing over first two toes
59. Jerking entire upper body backward
60. Full-body jerking tics
61. Rolling neck
62. Scratching entire body all over really fast
63. Grabbing crotch area
64. Hitting back of neck and back with hands
65. Full-body muscle tightening, which causes me to slip down in my chair and hold the position
66. Rubbing feet together in bed
67. Jerking body upward in bed and just jerking all over the place in bed (fish-out-of-water tic) … Oh gosh I haven’t even gotten to the vocal tics!!!
68. Screeching sound
69. Forceful “Huh” or “Heh” sound
70. Bird-chirping sound
71. Whistling
72. Loud sniffling
73. Slurping sounds
74. Gasping
75. Taking in sharp breaths/breathing tics
76. Clicking in back of throat
77. Loud high-pitched noises
78. High-pitched tea-kettle noise
79. Hitting bottom of hands together forcefully
80. Hitting feet together
81. Forceful coughing so hard that it makes the muscles in my back hurt and gagging as a result
82. Clearing my throat
83. Grunting noises
84. Air swallowing
85. Biting my lips
86. Licking my lips
87. Picking my lips
88. Sucking in the side of my lip to make a pucking sound
89. Hiccuping noises
90. 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 forwards, 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 res ponces.  I will continue to update on how it's going and if anything new happens with CBIT :) 

Valentines day! :)

Happy Valentines day everyone! What are you doing to celebrate? I'll be spending valentines day with my amazing boy friend who accepts me, tics and all. Although I haven't been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn't change his opinion about me.

Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said "Of course they like you! You're so laid back and sweet. You're the kind of person who a child would naturally feel comfortable with and open up to". I so appreciated his compliment! It made me feel great and so special smile emoticon

Pre-Hanukkah Party Tics 2014

Well it's that time of year again that every ticcer seems to look forward to and dread at the same time, the holiday season. With all the commotion, excitement, preparation, and family, tics always seem to run rampant this time of year. Today is the day of my family's yearly Hanukkah party and my tics are getting pretty darn forceful.

After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i've started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics. Being around my family members is very stressful for me (tic wise) and i'm sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, i'll just say this: I come from a family who values perfection and social status, and Tourette's doesn't really fit into that mold very well. Don't get me wrong, I love my family and I really do enjoy being home and spending time with them, but it's very rough on my tics and anxiety.

Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn't seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking "tic breaks" where I excuse myself to go to the bathroom while i'm around my family and just trying to spend less time around my family members (spending time with them in 30 min increments). These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i'm able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.

Right now i'm up in my room while my parents prepare for the party. I've been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion. It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i've been avoiding the downstairs as much as I can, I've still gotten a bit of the onion feeling in my eyes. It's not nearly as bad as last year, but it's definitely still contributing to my tics.

I'm having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i'll be able to come upstairs with her to let out my bigger tics.

Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone and good luck to everyone trying to manage the holidays with tics!

Talking at the Medical/Nursing School about Tourette's

Today was the day! I spoke on a panel with a neurologist and nurse to about 50 medical school students and nursing students! I was originally told there were going to be about 200-400 people there and was relieved when I got there to see there were only 50. The fact that there were less people made it easier and less stressful for me, but at the same time it would have been great if I could educated even more people. That's okay though, 50 people is a lot and educating people about Tourette's ins't simply a one day thing! I educate people on a regular basis! 

Anyway, today I was excited to help future doctors and nurses understand more about Tourette's! I got tons of great questions and answered them as honestly as I could. I talked about my diagnosis process, CBIT, medication, how I tell my classes about my TS, my experience in school with TS, and more! One lady asked me if I could drive, and even though I told her I could, the neurologist wasn't so sure that I convinced her, lol. 

Afterwards , an older man came up to me and told me that he enjoyed the talk, that he now knows TS is so much more than swearing which he didn't know before, that he thought I was really in control of my life, was doing great a great job dealing with living with Tourette's, and that he loves the way I live my life. That made my day! 

At the end, my neurologists nurse told me that she thinks everyone really enjoyed having me there and that I was really helpful. I felt really confident on stage and like I could just be myself. I'm proud of myself for spreading awareness and talking openly and confidently about my Tourette's in front of such a large group. Hopefully I made a difference :) 

CBIT for Tics

Today was my first day meeting with the CBIT therapist I'm going to work with. My neurologist recommended I try CBIT for tics before trying a different medication. I don't know if it's going to help, but i'm sure hoping so! I can tell you one thing, it was so nice to not have to educate the therapist about TS like I usually have to do! She was teaching me new things instead of the other way around. She is very kind and I really like her and her approach. I'm cautiously hopeful! A reduction of my tics would be so nice :) 

To learn more about CBIT, click here: http://www.tsa-usa.org/imaganw/CBIT_TSA_Brochure_English_web_version.pdf 

An Update about CBIT and how it has affected my tics after 8 months of therapy (on and off) (this update is from April, 2015): 

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 #1 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 re-arrange 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!

Now that's not to say some of the tics i've worked on with CBIT will 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 a lot less tics! I'd say that's pretty darn good! The ones I am most happy i've targeted with therapy 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.

 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.