Need help...chronic motor tics driving me crazy!

I’ve found taking anti-epileptic drugs helped. I had to go off of them for other side-effects, but I’m overly sensitive to meds so perhaps they can do you better.

Find a yoga therapist who can help you “connect” your mind with your muscles. You can learn to engage your muscles as you stretch and hold poses. You will gain control and at the same time strengthen and balance your muscles with your nervous system.

The only solutions I’ve found that work are trying to avoid the triggers by getting enough sleep and avoiding extreme stress. Medical science never helped me with them and often caused even worse side-effects.

I think @Cruiser is right though. Yoga and martial arts can give you the right mindset to face normally stressful situations without the stress actually getting to you.

I am only making suggestions/guesses, but has your neurologist ruled out Tourette’s Syndrome? Or maybe an extreme version of Obsessive/Compulsive Disorder? The irresistible urge to move reminds me of akathesia (sp.?), a side effect of some medications, or Restless Leg Syndrome. Maybe these conditions result from the same part of the brain as your chronic motor tics. Have you been to any other neurologists, or maybe gone to a research hospital clinic? Sometimes they have some new Ideas or trials for medications which are not in general use yet.

Some brain conditions have been helped by mild electrical stimulating implants.

I’m sorry I can’t be of more help, but I hope you find a way to get some relief and have a more pleasant life.

I’ve battled with tics since I was 7 as well. I actually have Tourette’s Syndrome but doctors didn’t diagnose me correctly until I was a teenager because I didn’t display vocal tics that were as pronounced as my motor tics. My vocal tics are pretty mild (sniffing, coughing, clearing my throat, etc) and can easily pass for normal bodily functions. It was an extremely frustrating process until I finally got the right diagnosis! I don’t take medication for tics because the side effects of the meds are often worse than the tics are in my case. One thing I have learned in my experience with tics though is that holding them in ALWAYS makes them worse. A lot of times when I’m in public and say I feel the urge to shrug my shoulder or turn my head in a way that causes odd attention, then I try to focus the energy of that urge into a “more appropriate” activity – such as popping my knuckles, wiping my face, stretching, etc. But then once I’m home or in my car – I go ahead and let them out. You can’t stop tics, you can only delay or disguise them. I have found that trying to be more comfortable with the fact that I do have to deal with these tics and it’s just a part of my life has actually made it easier in a way. Sure, it hasn’t made them go away… but it makes me less anxious when they do come out and as a result they tend to be less severe that way. I hope I’m not just rambling and you can find some use out of what I’ve said! Good luck :)

thank you all for your thoughts and thoughtfulness!

@gemiwing, interesting, hadn’t heard about those.

@Cruiser, yeah i actually did start doing yoga just recently to do just that. it’s definitely relaxing.

@jerv, avoid those triggers i will! :) and like you said, my doctor said more powerful meds would have those not-so-fun side effects.

@margot23annie, u may be thinking of tardive dyskenesia that’s usually caused by anti-psychotics, which actually are meds used to treat tic disorder but only in extreme cases. can’t say i’ve ever taken any so fortunately i don’t have that. but OCD i definitely have those tendencies…restless leg syndrome, yep got that too sometimes cuz i tend to be anemic…but the tics my neurologist says aren’t likely explained by either of those since i’ve had them so long. you definitely have some good ideas about seeking other opinions.

@wtfrickinfrack, wow well i think i almost certainly have tourette’s, since i do have those vocal tics too. like you said, my neurologist said the stronger meds have the bad side effects so i opted for not as well. i do notice resisting makes them worse…but one question for you: must you have the conscious urge to tic BEFORE you tic, or have you ever discovered you had been tic-ing without noticing? i have experienced both, but especially when i become conscious of them do they get worse. i wasn’t sure if you’ve ever tried with success any techniques to NOT think about them (as counterintuitive as that may seem)? and rambling you did not. it’s honestly a relief to hear about other people in similar situations because the neurologist i talked to wasn’t too good on the practical side of things. her job seems very medication-oriented and she wasnt much help in explaining the everyday aspects as you did.

You most definitely don’t have to experience the “urge” in order to tic. I suppose I recognize it as an urge when I’m in public because I tend to be hyperaware of it. But I experience both as well. One thing that I’ve noticed while talking to others with Tourette’s/tic disorders is that everyone has a unique twist on it. That’s something doctors can’t seem to understand (or really anyone without tics for that matter). Some people describe their tic experience as a build up of energy that needs to be released, others as an ‘itch’ to perform some sort of action, and still others that say they rarely feel it coming on. It’s been important for me not to hinge my view of tics on what doctors say because they very plainly tend to give bogus advice! Anyway, as far as trying not to think about them is concerned, the only success I’ve had has been coming to terms with the fact that they’re going to happen and trying to become comfortable with it. I know it’s easy to hate tics and feel like they’re a burden that’s constantly hindering you… but I finally had to reach a point to where I accepted myself inspite of what I wished could be different about my life. That really has made it easier to focus on other things instead of constantly worrying and obsessing over tics and potential embarrassment. Most people with tics agree that trying to focus on something that fully occupies their minds helps. For instance, I enjoy reading quite a bit – so when I’m mentally engaged in a good book, I tend to tic less. So whatever your interests are (music, reading, sports, etc) could actually serve as a “distraction” when ticcing is inconvenient for whatever reason. Of course, practice is important here! I tried it when I was alone for a while just to test it out and see what ‘distracts’ me in the most effective ways. I hope I addressed your question! Feel free to PM me and ask me any questions you might have in the future ;)