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Thread: How I've reduced my tics

  1. #1

    Default How I've reduced my tics

    Hi, all.

    My name is Andy, I'm 28 years-old, hail from the Eastern US, and live a trying--yet thoroughly enjoyable and rewarding--life with Tourette and comorbid OCD. I am here for support, to learn from you, and to share my wealth of Tourette knowledge and experiences. A curious mind and a statistician by trade, I've toyed with countless models and ideas in an effort to expose the variables that chiefly exacerbate or ameliorate my own Tourette. I believe I am at the precipice of discovery, insofar my unique case of Tourette is concerned. Given my recent success, I would be remiss--perhaps even selfish--to withhold what perhaps may help even just one individual or family.

    Observations:

    1) INDOOR TEMPERATURE -- My tics are unbearable in hot indoor settings, and I mean unbearable. In my apartment during the winter, 73 degrees is my upper limit, and only because I luckily have a draft right by my bedside. When I visit my parents in the winter, they usually have the heat cranked around 75, which is tantamount to Gulag torture. Of course, when I visit, they lower the temperature below 70 so that I am comfortable. I prefer 68 in the winter at their place. In the summer, I need a full-time running fan in my face or good AC that keeps the room below 64. I took an actuarial exam the other day at a testing center that was 72, and I walked out it was so bad. I recommend tinkering with your house's temperature and see how that helps. For example, like all mornings, I wake up cold, so I raise the temperature. This morning I raised it to 78, with the intention of lowering it in a few minutes. I received a business call, forgot, and hell with my tics ensued. When I realized my blunder, I lowered the temperature to 67 (it is 19 degrees out now). It is very cold now, but my tics STOPPED just like THAT! When my tics are really bad, I like to put my head in the freezer--as funny as that sounds. Try reducing the temperature of your house and observe its effects on Tourette. I recall my parents being uncomfortable at times with how cold I needed the house, but if you are a parent, please wear a jacket if this works. REALLY reduce room temperature when painful tics are strung together and seemingly unending. Try it! Room temperature is so critical when it comes to my tics.

    2) NOSE-CLOGGYNESS -- This is one of my more recent findings. And boy it is right at the top of importance with indoor temperature. Anyway, my nose is perpetually stuffy. This is partially attributable to a few things: allergies, tics that mess with my nose and throat, and medications that I take. I make high-pitched noise tics when I struggle with mucus or a clogged nose. My remedy, which works damn well is Robitussin (or Tussin) DM. Also known as Mucinex and a host of other brand names. The drug ingredients are dextromethorphan (cough suppressant) and guaifenesin. I have had success with just the guaifenesin (no DM), but for some reason DM is helping me lately. Note that DM has all these warnings over abuse; and while I don't abuse DM, I'll take it anytime if my tics are THAT bad. Then again, you may not need the DM component. I also use Nasonex and Claritin, the latter more helpful than the former. Unclog your nose!
    *Edit: Consult Doctor, always.

    3) UNDERWEAR-TIGHTNESS -- Again, a goofy premise. But my tics improved dramatically when I purchased over-sized underwear. In fact, I now usually wear loose shorts in lieu of underwear. Strange, but tightness at the waist is my recipe for a lot of tics. Try this; it hardly requires effort. Wear shorts under the pants. Avoid tight pants or tight-fitting belts.

    4) SLEEP -- This is one is slam-dunk obvious, I think. I went to a rigorous and prestigious undergraduate institute, whereby homework was life and sleep was a luxury. Suffice to say, I struggled. Younger kids will probably not have issue with this (I'm assuming younger kids don't pull all-nighters). In any event, I'm not saying get EXTRA sleep, but NO sleep is a NEVER. Tics will be off the wall all-day and nothing but sleep over several days will solve them. 1 hour of sleep will struggle, but it is 10000x better than 0 hours of sleep. Parents, if you have a TS kid who hasn't slept the night, take the pressure off him/her, let him/her get just a little sleep (don't say, "you NEED to SLEEP!!!!!"). When it comes to college and you need to pull all-nighters, make sure you go to a school with a dedicated, caring and powerful disabilities coordinator. TS is hell without sleep. (I'll cover school problems in another post. Yes, they are aplenty. And people, teachers, kid, administrators, everyone can be mean and stupid.)

    5) AMPHETAMINES/STIMULANTS -- I'm aware that ADD/ADHD is frequently comorbid with Tourette, so this is a tricky issue. If you (or your kid) has Tourette and also has ADD/ADHD, do everything to avoid stimulant use. In some cases, such as mine, it is unavoidable. Stick to the prescribed dosage, and do NOT NOT NOT NOT NOT develop bad habits or abuse these drugs because your tics will be hell. These also affect sleep, a downward spiral you do not want.

    For now, these are my five main tenants. I can concisely put this information together later upon request, but I have work myself to do. My goodness, I wish I knew all this at a younger age.

    I have a lot more to offer, and I want to help those who live with this misunderstood, media-sensationalized, somewhat-invisible, dastardly underfunded condition! <Edit> I have spoken at schools and experienced a lot. I'm an old 28. I'm still struggling in many regards, but it DOES get better! I'm also comfortable speaking about my medication history if you wish to ask. I have Tourette, and as such, I KNOW things that DOCTORS cannot possibly. Bless you all!

    -Andy
    Last edited by Steve; December 27, 2013 at 09:48 PM. Reason: Minor Edits

  2. #2
    Join Date
    Jul 2011
    Location
    Georgia, USA
    Posts
    287

    Default Re: How I've reduced my tics!!

    I agree with the temp recommendation. We usually don't turn on the heat in the winter unless it gets down to 60 farenheit.
    I would recommend a medi pot with distilled water and natural sea salt - versus all those meds. We use air filters and change the filters every 3 mos. We also have hard woods throughout the whole house (carpet is the worst for allergens and voc's.) A full basement (not a crawl space is good) and a dehumidifier. (I know about the recall.)
    Yea tight clothes not good.I recommend 100% cotton clothing and use natural detergents and do not use fabric softners, parfumes or optic brighteners.
    I agree with sleep. Most can't sleep at night. It's important to keep a routine.
    Stimulants and caffeine can cause problems and I have heard steroids too.
    Great points and suggestions

  3. #3

    Default Re: How I've reduced my tics!!

    Hi Andy, thank you for your advice.

    i find that a good nights sleep helps me significantly. Another thing that helps me when my tics get worse is talking about it. I'll confide in my husband or my mom or a really close friend and my tics will disappear almost instantly. Also, distracting myself helps a lot. For example, playing with my kids or making dinner...just focusing on something and taking my mind off ts helps. A stress free lifestyle, as unrealistic as this is, also helps me. What seems to make my tics worse is being out alone. Like if I go grocery shopping and I'm alone, I noticed that my tics are a lot worse than if I had someone with me. This is really difficult for me at times and so is meeting new people and hoping that they don't ask me about my tics. I'm 34 years old and still not comfortable with the fact that I have ts. I believe that having ts has held me back in life significantly and has caused me to make some bad choices in my teenage and young adults years. Work is a struggle for me. I'm a stay at home mom and house wife right now, but this won't last forever. The work struggle would be not having the privacy I need to let my tics out when I need to or also my tics just get worse when someone is watching me. So most office settings are stressful just from the lack of privacy never mind the work stresses themselves. Anyway I can ramble on forever but then I'll miss out on that ever so important sleep.

    One question before I go, I wonder if anyone has replaced a noticeable tic with something less noticeable when out in public? I've heard of people switching up their tics so that people won't notice as much. I haven't quite figured that out yet and would love to hear if anyone has mastered this.

    Thanks!

  4. #4

    Default Re: How I've reduced my tics!!

    I will keep your suggestions I mind except the one...

    Quote Originally Posted by TouretteRollerCoaster View Post
    1) INDOOR TEMPERATURE -- My tics are unbearable in hot indoor settings
    I am the complete opposition of you here. My tics get worse when I'm in a cold room and fell chilled. My tics bother me less when the room is warmer. Although when i'm out side is 30C below (-22F I think...I'm Canadian) and bundled up the cold doesn't bother me.

    Your completely right about how temperature can affect ones tics.

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: How I've reduced my tics!!

    Quote Originally Posted by Filomena
    I wonder if anyone has replaced a noticeable tic with something less noticeable when out in public?
    Hello Filomena and welcome to the Forum!

    Excellent question, because this is a technique many of us older people with Tourette have employed over the years when little or no support or guidance was available.

    We used to call it "tic redirection" where we would use muscle energy in another part of the body to hide or counteract a tic to make it appear more socially acceptable.

    The good news is that some very perceptive doctors, like John Piacentini, Ph.D., Douglas Woods Ph.D, Matt W. Specht Ph.D.and John T. Walkup, M.D. who are Tourette rockstars, have developed and tested a comprehensive strategy for managing tics called Comprehensive Behavioural Intervention for Tics (CBIT).

    CBIT involves several components of learning, but the key is to develop a competing response or a tic blocker that can be used to control a tic when it occurs.

    Finding a competing response is not a silver bullet and on its own, and requires a comprehensive approach guided by a therapist trained in providing CBIT.

    Our Forum has extensive information on CBIT HERE and if you would like further details let us know.

  6. #6
    Join Date
    Aug 2013
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    upstate NY
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    Default Re: How I've reduced my tics!!

    Andy, congrats on figuring so much out about what works and what makes things worse, and thanks for writing it up.

    For nasal stuffiness, we like to use saline spray. What I love about this is that if the mucous membranes are swollen, then we feel a bit stuffed up, even if there's no particular mucous going on. The saline spray is wonderful for relieving swelling.

    For severe nasal stuffiness, we like Alkalol, which is similar to a Neti Pot, but we find it easier to use.

    I love guaifenesin and hate the DM version. Did you know there is another form of guaifenesin? It's called Mucinex, and it's a tablet.

    I personally am allergic to dairy products, but my children do eat dairy -- but I don't give them any dairy when they're congested, because dairy makes our natural mucous thicker.

    I have a lot of experience with hot flashes, and learned (the hard way) that if I'm cold, I should only turn the heat up TWO degrees and then wait an hour before turning it up any higher. It takes the heating system and the house some time to react to my instructions! So if I'm feeling really chilled, I use a heating pad (electric, or the kind that goes in the microwave) or an old-fashioned hot water bottle, to warm up while I'm waiting for the heating system to have its effect.

    To cool off quickly, I like to use a wet wash cloth. It should be wet but not dripping. I fold it and put it on the spots where the blood is near the skin, for example the insides of the wrists, elbows and knees. Forehead and neck are good too. Another trick I sometimes use for quick relief is to dunk my feet in cold water. In the summer to keep cool on a bike ride I put a small folded towel, dripping wet, on top of my head under my helmet. Also you can buy a special synthetic cloth that you dampen and keep around your neck. This could be helpful for you when you're not at home.

    Thank you especially for your note to parents about sleep. This reinforces my own instincts -- and will help me assert myself with my son's school.

    -------------

    Filomena, if you can find a therapist who can help you get started with CBIT, great, go for it!

    If you have trouble finding someone in your area, or want to experiment a bit on your own while you're waiting for your first appointment -- my son and I have tried a bit of this. I felt he was not old enough (age 10) to do this in a formal comprehensive way.

    The first tic he chose to try to replace with a different behavior was this: he was scraping his teeth over the skin below his lower lip. This was damaging his skin and when he tried to practice his beloved trombone, he cried after a few minutes because it hurt. The replacement behavior we chose was to purse his lips instead of doing the scraping thing. Whenever I saw him starting to move his mouth to start scraping, I would look purposefully at him (meaning, I looked him in the eye and raised my eyebrows a bit) and purse my own lips. This was something I could do in public without embarrassing him! It worked.

    We're working on one socially unacceptable tic now. In piano lessons, when my son wasn't actively playing, he would diddle with a hand between his legs, and his piano teacher told me this was making her uncomfortable. Here's what his teacher and I worked out. We're trying to reduce dead time. When he's done with a piece, she asks him to go get the next piece of music. I prepare by stacking his music in the hall when we arrive, instead of handing it all over to his teacher at the beginning of the lesson, as we used to do. This way, she has a couple of moments to make her notes in his assignment book, without any diddling going on. Seems to be helping!

    For grocery shopping, I wonder if this would work -- play some music with an mp3 player, but not with discreet earbuds. Go for something obvious, like over the ear headphones. Choose some music that you really like, and that makes you want to move with it -- whatever style you personally go for (could even be classical!). Then allow yourself to sing along and make some dance moves. I have seen people do this in the grocery store. You might feel less self-conscious doing this than doing your customary tics.

    If you're a shy person and think you might feel embarrassed doing this in a grocery store, perhaps you could work up to it by going for a few walks with the mp3 player and trying the singing and dancing while walking in that setting first.

    Another idea might be to listen to a really interesting book on tape, interview program or comedy podcast with an mp3 player while you're pushing the grocery cart around. In this case, earbuds would be fine.

  7. #7

    Default Re: How I've reduced my tics!!

    Hi,

    thank you for your advice. I had a long 3 hour hair appointment and used my music to distract myself, not dance to the beat, but your idea led me to realize that being idle is a problem for me, and it really worked nicely lol Sometimes my tics were not there at all. where I usually dread this kind of long appt., today I came home relaxed and happy not tense and stressed. Looks like Being idle is my worst enemy. Also I watched the seminar on CBIT and understanding how my brain and the tics work helped me to control them. I'd say my tics have been reduced by at least half, just by understanding and practicing a little of the CBIT information I obtained from that video.

    Having ts is hard for kids but rest assured that as your child reaches adulthood, everything including the tics will be so much more manageable.

    Thanks again

  8. #8
    Join Date
    Aug 2013
    Location
    Southeast Pennsylvania, USA
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    56
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    11

    Default Re: How I've reduced my tics!!

    Hi all,

    I think you all gave helpful pointers and suggestions. It has given me a lot to think about. I thought it interesting how hot temps affected one and cold temps affected the other. I know that both of my grown children do very well in hot weather as far as their asthma goes. My son, who is the one with TS, has less tics in the summer, but I think that is because that is when stressful school is out. This is his last year of school, hopefully, and we'll see what happens when he has to get a job. He is still ticcing from the sudden burst of tics he had a few months ago when he had a job interview. They never really went away.
    Anyway, thanks for all the pointers. Good food for thought.

    Grammy

  9. #9

    Default Re: How I've reduced my tics!!

    Hi Steve,

    can you let me know how to find a CBIT therapist in my area?

    thanks

  10. #10
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: How I've reduced my tics

    Filomena,

    I will try to get some specific information; however I do know there are at least four accredited CBIT therapists in and around the Toronto area, if in fact this is where I think you may be located.

    Three were trained this past September in Mississauga by Dr. Douglas Woods and the TSA CBIT Institute at the TSFC National Conference.

    You could call Lynn at the TSFC National Office for specifics, as I believe Lynn has an up to date list of CBIT practitioners, and in the meantime, I'll make my own inquiries. Pleae let me know what tou learn.

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