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Tic disorders....any insight?

Jul 24, 2011 - 16 comments

I'm going to paste what I posted in the Neurology forum.  I got one generic response from a doctor, but I'm looking for people with experience or knowledge that can help me determine what I need to do first and what to expect:
I'm not really sure what I should be asking, but I need some information on TIC disorders and the differences between those and Tourette's.  As long as I can remember I've had these "nervous habits" (that's what my Mom always referred to them as).  Things like making noises or twitching my head, tensing abdominal muscles in a certain, repetitive way.  blinking my eyes, crossing my eyes, etc.  They will be active for awhile, sometimes more than one at a time, then they will go away for awhile.  Now, as an adult, I am seeing a correlation where they are popping up with intensity during my most stressful times.  Currently I have one that I guess could be described as flexing and the tendons in my neck and I have done it to the point where my jaw is stiff and sore and my head hurts.  I've also found that I have been gritting my teeth/clamping my jaw shut a lot.  

Is there medication or therapy for something like this?  How do you get diagnosed?  It's driving me crazy.  Any help would be greatly appreciated!

I think I've avoided bringing this up for a long time.  I never really thought it was something like a disorder...I just figured it was just some stupid way I handled stress.  It wasn't until I had an intake appt with a psychologist for my daughter that he mentioned something to me about it.  AFter listening to me talk about her, out of nowhere, he says "have you ever been diagnosed with tourette's or a tic disorder?" I was like "Uhm excuse me?".  Then he proceeded to tell me about a couple of tics he had observed while I was talking.  I just kind of blew it off, like he was a wacko or something.  But, the seed had been planted and it got me thinking.  Then recently when DH and I started marriage counseling the therapist said something about me possibly having signs of ADD or ADHD (which I have NEVER been told before). I then brought up the tic thing and she said "It's funny that you brought that up, I was going to ask you about that because of what you've been doing with your hands"  So now I'm really wondering if there isn't something screwed up in my head.  

I want to know if there are other symptoms associated with these disorders OTHER than the tics.  What kind of therapy/medication is used.  How long does is usually take for some relief from these annoying things?  I feel like I'm going crazy because the tics I currently have are making it hard for me to sleep and eat.  My jaw and head hurt all the time and I feel like a freak out in public.  :(

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by MyLittleGirl2011, Jul 24, 2011
See a Psychologist.  Sometimes a mild anti anxiety medication will help (Ativan, Valium)

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by LosingMyMindInGA, Jul 24, 2011
Thank you!  I'm already taking Zoloft for atypical depression.  I'm going to speak with my counselor to see if I might be able to see the psychiatrist at their office.  He's really good, but has a 5 page waiting list.  Just looking for some insight in the meantime.  Could I just go ahead and see a nuerologist or should I go through a regular doctor/psychologist first?

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by nola0805, Jul 24, 2011
I'll tell you what I know and I can get more info for you (I work with the head of the Tourette's Clinic at Columbia University). There are motor and vocal tics.  A Tic disorder is when the tics are motor or vocal and Tourette's disordrer is diagnosed when a person has both motor and vocal tics.  You seen to be describing motor tics only, so Chronic Tic DIsorder seems most apporpatie.

Tics naturally wax and wane, and stress definitely can exacerbate them.  The only other symptom that tends to co-occur regularly with tics is disinhibition (that is trouble with impulse control).  Also many people with tic disorder also have ADHD and some also have OCD).

Treatment can involve behavioral strategies, education, and medication.  There is no one medication that is 100% effective.  The most effective are the atypical neuroleptics (like risperdal) but these can have some pretty serious side effects and I would only recommend them if the tics are very disruptive.  The psychiatrist I work with most commonly prescribe clonidine and guanficine for tic management.  Whatever you do, do not take standard ADHD medication like Ritalin as this tends to make tics worse. Probably the best place to start is with behavior strategies - especially tic reversal therapy.  It works really well with motivated adults, but you need to find someone trained in this technique.  Are here any universities near you?  Are you anywhere near Emory?

Feel free to pm me for any additional info.

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by adgal, Jul 24, 2011
My mom has something similar to what you describe.  She also is on medication for depression/anxiety and has been told it is related to that.  Kind of a bad case of nerves is how she describes it.  It gets worse for sure during stressful times.  She has never been told this is related, but she is also grande mal epileptic, although her seizures have been under control through medication for many years now.  I have often wondered if it is not also tied into that.  That's about all I can offer except to say that if this were me, I would probably see both a nuroligist and psychologist/psychiatrist.  Sorry I can't be more help, but I do hope they are able to sort it out for you.  I know my mom has told me it can be quite uncomfortable for her as well.

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by nola0805, Jul 24, 2011
Two additional things - I would stay away from Ativan and Valium for this - not the most effective and they can raise other problems.  I would definitely see a psychologist as well as a psychiatrist or neurologist, as behavioral treatments are typically more effective than medication (but with severe tics using medication along with behavioral treatment is advised - the medication can take the edge off the tics in order for the behavioral strategies to work).  Also, basic relaxation training can also work wonders - there are a lot of relaxation training DVD's and videos around that you could start yourself while waiting to be seen.

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by LosingMyMindInGA, Jul 24, 2011
Nola:  Thanks for the info.  The things I listed are just some of the ones I've had over the years.  I routinely have one where I make this wierd noise, kind of a cross between a whimper and just a sound.  I've had that one off an on for as long as I can remember.  I've also noticed that every so often when I am talking I have this urge to make some words more high pitched (i guess that's what you'd call it).  I've had these "habits" or "tics" or whatever they are, as far back into childhood as I can remember...looooong before antidepressants were brought into the picture.  Never been on any other medications except tihngs for allergies and asthma.  I dont' know where Emory is...I'm near Macon, GA though.  I'll have to see if there is anyone around here, I plan to talk to my therapist when I go Tuesday and see what she has to say.

Adgal: It is uncomfortable, to say the least.  It's downright annoying most times.  I can consciously stop doing them, but then it gets to a point where the urge is so bad that I give in just get "relief" .  This is the first timeI've had some that have caused me physical discomfort.  

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by nola0805, Jul 24, 2011
Those do sound like vocal tics, and therefore you likely meet criteria for Tourette's disorder, but of course, talk to a psychologist/psychiatrist/neurologist for a formal opinion.  Sorry you are dealing with this, I know how hard Tourette's can be.  It makes sense that you have had them since childhood, as that is the most common time for them to start. Emory is in Atlanta, but I am sure that you can find someone near you that knows habit reversal therapy. Your therapist is a good person to ask.  If she does not know any good people that do this, then I would suggest starting with a psychiatrist and/or neurologist that see many people with Tourette's - and they would likely have good referrals.  Good thing that you got this identified!!  Half of the battle with Tourette's is understanding what it is - so you are on your way to getting more control over it!!!!  Hang in there.

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by LosingMyMindInGA, Jul 24, 2011
Thanks, Nola! I see my counselor on Tuesday and will hopefully be able to get SOME answers from her then. This "episode" I've had the last several weeks is probably that worst that I can remember.  I've got several of them going at once and 2 of them are ones I don't remember experiencing before.  Are there any websites YOU know of that talk about the different types of therapy and medications used?  

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by k10road, Jul 24, 2011

I don't know much about Tourette's at all as I don't have any medical background like that, nor do I know anyone with it.  I am however very intrigued by Tourette's for whatever unknown reason, and I have read a lot about it, and I love to watch documentaries about it because it just intrigues me so much.  One thing that immediately struck me that you said is "I can consciously stop doing them, but then it gets to a point where the urge is so bad that I give in just get "relief."  I have heard people with Tourette's (on the documentaries) say this EXACT same thing.  Described it the VERY same way.  Not saying that this means that you have it at all, just found it interesting that you said that.

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by narla, Jul 24, 2011
My son was diagnosed with Tourette Syndrome at 5 years old,he has both vocal and motor tics,he also has Copralallia,(swearing) Echolallia,(repeating words or phrases)
We found through the Tourettes support group here in Australia there were other things that seemed to go hand in hand with Tourettes,for instance: a lot of the kids with Tourettes also had very heightened senses,ie:acute hearing,taste,smell,and touch,my son also has very good eyesight,This was just an observation we made through discussing our children's abilities,If your interested I'll explain more but it's detailed.

My son was first put on Clonidine at 5 years to help with the tics,we had some success,but the tics were always there, just not as severe,at about 9 the Clonidine seemed to stop working so he was put on Haloperidol,which was great for the tics but just changed his persona,he was so tired all the time he was like a zombie,had to have a bed set up at the back of the classroom,by 12 years old this wasn't working that well either,so now the doctors wanted to put him on Risperidone(I think in the US it is called Risperdal,not sure though) This is a anti-psychotic often used to treat people with schizophrenia,
We as parents took matters into our own hands and decided enough was enough,the meds were just changing our boys personality and demeaner,I decided instead to take him out of school,take him off all meds,and teach him at home in a friendlier environment,he could not function in school without meds,but at home the tics didn't matter,plus we eliminated the stress of dealing with other kids,who could be very cruel.

So you really need to decide whether the tics are bearable or whether you think you'd function better on meds,it can be a catch 22,sometimes we can lose ourselves with the meds,

My son is now 26 and is doing really well,taking him out of school and building up his confidence and self-esteem was the best decision we could have made,he works as an Administration Officer at a private hospital,loves his church and functions well in society,of course he still has Tourettes but has learned more control,and copes well.

If you want to chat PM me,I'd be happy to answer anything I can..

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by krichar, Jul 24, 2011
So...'my son has this and at first we thought it was his ADHD meds causing the tics, just as you explained. Sometimes they  are noticeable, sometimes they are not, more frequent during times of concentration and stress. At the ADHD resistance clinic they actually diagnosed him with tourettes. It was explained to me that tourettes is not always as depicted on tv... Yelling out swears uncontrollably, but just as he was. Both vocal (clearing of his throat, sniffling) and physical (eyes blinking, hand raising) they come and go and never all o them at the same time. For example... For a few weeks he will clear his throat and that will be his tic for those few weeks, it will seem like he has no tics for a few weeks then all of a sudden he will start sniffing his hand and hat will be his tic for a few weeks (wax and waning like the other person mentioned) he is on a medication called rispiridone (sp?) to help with the tics... Have to go, screaming baby! If you have any questions please feel free to message me!! :)

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by LosingMyMindInGA, Jul 26, 2011
Well, I see my therapist today.  Hopefully she can give me some answer or atleast point me in the right directions.  I've been reading about Tourette's and Tic disorders in general.  It seems there is a correlation between a diagnosis of those and higher instances of ADHD, ODD, Depression and OCD.   I have atypical depression (I don't get the "boohoo, whoa is me" phases - mine is exhibited through anger and aggression).  It's been mentioned by my therapist that I MAY have some signs of ADD.  I have also wondered for years if I don't have some ocd-like tendencies.  Things like the fact that the sheet and comforter on MY side of the bed have to be lined up perfectly or it bugs me to the point of getting pissed off sometimes.  Or like when I pull my hair back in a pony tail, if I can't get it COMPLETELY smooth, I have been known to get so aggravated that I literally scream out a profanity.  <--That isn't as often as it used to be, pretty rare now actually, but does still occur every so often.  There are other things that I just can't think of right off hand.  I just don't know if these things are still within the realm of "normal" (whatever THAT is) or if they fall under a category for a specific diagnosis.  

I do know that with all these "issues" I'm starting to feel like a crazy freak.  I know I shouldn't because things like this are usually out of the control of the individual experiencing them, but it still makes me feel "wrong", if that makes sense.  

These latest Tics, if that's what they are, have been better the last couple of days.  Still there, just not as bad.  I've found that when I am concentrating on something, like my schoolwork, I go periods of time where I don't do them or just don't notice them.  But during those times I am gritting my teeth and clamping my jaw shut so hard it makes my head hurt.  Tylenol hasn't been helping my headaches lately.  I've been taking psuedoephedrine for the sinus part, but it doesn't alleviate the whole headache, which is all over, not just the sinus pressure related areas.  I've been taking small amounts of hydrocodone to help with the headache part because plain tylenol might as well be sugar pills.  I'm trying to be very cautious about how much and how often I take though, as I don't want to become dependant.  I only take a half of a 5/500 mg pill once MAYBE twice a day, but not every day.  Seems that when I DO take it, it has that mellowing affect and that, in turn, helps calm the tics.  So, perhaps finding ways to reduce my anxiety and stress will put them at bay.  

Once the kids go back to school next month I think it will help. I won't have them here all day long screaming and yelling, arguing and fighting and being defiant.  With just Gabe (who will be 3 by then) and Lily (who will be 11 mos), I should be able to complete more school work during the day, and therefore, not have to stay up so late to do it at night.  We shall see!

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by Ashelen, Jul 26, 2011
I have a mild case of chronic tic disorder...annoying, but not noticeable to anyone but ME. I actually developed it after an acute dystonic reaction to some medicine, and ever since then my neck twitches my head to the left slightly every once in awhile but I've looked in the mirror and asked people and you can't see it at all...I have to flare my nostrils, but usually can manage to keep that one to when I'm alone, I clear my throat quiet to myself quite frequently, and I have to press my lips together or the urge becomes quite overwhelming....most of them I can control by using diversion tactics ...if I feel the urge to press my lips, I'll casually raise my hand and tap my upper lip or run my fingers over my upper lip as if I'm thinking..if I need to clear my throat, sometimes I'll hum and smile like I was intending to hum in the first place (lol, yes, I'm sure I look like a nut) and when I need to flare my nostrils sometimes I'll cover it with a sniff or reach up and pinch my nose like it itches. as for the head twitching...I tend to lean my head sideways and pat my hair or fix it, or lean my head on my hand, even though no one can see it I FEEL like they can, lol.

it's annoying as hell, but I know that it's only bad when I'm really stressed, or lacking sleep. I find that when I take pain pills the behaviors are almost non-existent. Too bad they wouldn't prescribe those for that!

When my stress level is minimal and my sleep level high...they're almost completely non-existent..but how often does THAT happen? my neurologist says they will probably stay the same or get better with time because of what caused them..I hope so...

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by LosingMyMindInGA, Jul 26, 2011
Ivy, I'm glad to see that someone *I* view as so intelligent, well-adjusted and happy is experiencing similar things.  Not that I wish it on you, by any means. It just makes me feel a little more normal :)  I'm sure you understand what I mean.

I WISH I could think of something that caused mine, atleast then I would have a reason behind it.  Something other than "I'm just hard-wired as a basket case". LOL Unfortunately I can't.  It's all in my head, literally!

Thank you for sharing this with me.  I have found myself trying to do the distraction techniques as well and they usually end up looking, or seeming, just as strange as the tics themselves.  6 of one, half doze of the other...either way it's not "normal", if there is such a thing!

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by k10road, Jul 26, 2011
GA, I had to giggle when I read your second to last post.  I have been diagnosed with a mild OCD, but the screaming out profanities when I can't get my hair smoothed just right...yea....that's a normal occurrence for me.  LOL.  Don't feel abnormal there.  Well, pretty much when I can't get anything right I do that.  It's terrible, especially with little kids.  The other day, my son asked me to build K'nex with him (kinda like Legos).  Well, I was trying to do this gorilla, and I couldn't get it for the life of me.  I won't begin to tell you the words I was yelling.  LOL

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by LosingMyMindInGA, Jul 26, 2011
K10:  that makes me a whole lot better to know that I'm not the only one! LOL Thank you!

Talked with my therapist today, she basically said that tic disorders are basically anxiety disorders - remove the anxiety, alleviate the tic.  So, he perspective (and this is a christian counseling center) is to do therapy, use techniques to "take the thought captive" and be open to letting the Holy Spirit help guide me, is the way to go.

She does want to try EMDR therapy (Eye movement desensitization and rationalization) on me and DH individually.  It's supposed to work by helping to release negative emotions that are trapped in the nervous system or something and replacing them with positive emotions.  It's performed similar to a neurological test or a dui test:  without moving your head follow my fingers with your eyes-kind of thing.  Only the therapist uses both fingers and moves them back and forth in a windshield wiper-like motion.  Sounds strange but it's not harmful so I'm game.  

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