Chronic eye blinking tic.

[Guest Guest]

Hello Monkeygirl

 

That was a cute little post. Very good message for new folks. Good to see your positive approach.

 

Did you have vocal tics too?

Did you have any OCD symptoms?

Did TS affect your academic/career life in anyway?

 

See you and goodluck.

[monkeygirl]

"Did you have vocal tics too?"

 

Yes, echolalia and, for a brief time, coprolalia.

 

"Did you have any OCD symptoms?"

 

Ummm... perhaps a bit. I've always been a very determined, stubborn person. Once interested in something I'm obssessive about learning everything. It has served me well in my life.

 

"Did TS affect your academic/career life in anyway?"

 

As I understand it, most Tourette patients have higher-than-average IQs -- I was told I did. I was extremely shy (understandably), but excelled in music. You probably know that tics stop when one plays an instrument -- very soothing.

 

I did well in school, was a classical piano protege through high school, won a music scholarship to USC, did well there, then dropped out to tour with a rock band. Spent over 10 years in the music industry, touring, recording, etc... had wonderful experiences. Did have trouble sometimes when I'd be up on stage, nervous, and the cameras would focus in on me -- I have some videos with quite a bit of footage of me ticcing away..... I continue to make a living as an artist.

 

I wish I didn't have it. Can I imagine not having it? No, not at all. It's part of who I am.

[Guest Guest]

Hi

 

Nice to see your reply.

 

At what age were your vocal tics maximum?

Do you still have vocal tics?

How did you manage at school and in public with echolalia and coprolalia? For how long and at what age did you have it?

Did coprolalia affect you as such? How frequent was it?

Did you take any medication for tics? If so, which medications did you take? Or did they remit on their own?

Are your tics noticeable to your friends, family (husband) etc.

How does your husband manage your tics?

 

Sorry for so many questions. But it feels good to hear such positive stories about people who have coped so well despite their problems.Your success is really encouraging.

[monkeygirl]

"At what age were your vocal tics maximum?"

 

Actually, I remember having them at around 5 and 6. The echolalia lasted longer than the coprolalia.

 

"Do you still have vocal tics?"

 

Not that you would notice -- we touretters "mask" pretty well -- I've had alot of throat-clearing/glottal stop sounds for the past year, but I try not to do them when anyone is listening.

 

"How did you manage at school and in public with echolalia and coprolalia? For how long and at what age did you have it?"

 

I wasn't in school, I was too young. I said alot under my breath, over and over -- my mother would over-hear me and ask "What did you say?". I'd reply "Nothing". She had 4 other kids, so she didn't notice that much -- or was just too busy to worry about it.

 

"Did coprolalia affect you as such? How frequent was it?"

 

OK -- at 5 the worst word I knew was "penis". I would say it over and over under my breath.

 

"Did you take any medication for tics? If so, which medications did you take? Or did they remit on their own?"

 

I took Haldol twice -- both times theside effects were unbearable -- I always felt the drugs were way worse than the disease. I also did Clonidine, Ritalin, perhaps some others -- I chose to not take medication in the end, much to my mother's chagrin.

 

"Are your tics noticeable to your friends, family (husband) etc. "

 

Yes. In my late teens my tics calmed down quite a bit, so I'm able to "mask" many of them. But the blinking/facial twitching is obvious. My friends tell me that when they first meet me they notice the blinking/twitching. But after getting to know me they just don't see them anymore. Which is interesting.

 

"How does your husband manage your tics?"

 

Manage? Why? He doesn't have any tics.

 

I just asked my husband -- he said he doesn't remember being especially struck by them, just thought I had a tic. In fact, he said that he felt at times he'd even start unconsciously doing my tics himself -- he remembers being on a date with me, and me asking "Are you making fun of me?" I've had other friends mention that they'd started unconsciously blinking their eyes alot when they were aroundme.

 

Preverbal children tend to mimic me, too -- I believe as a way of communicating -- it's really interesting. The way humans bond and communicate has so much to do with subconsciously acting the way others do -- we "mirror" each other socially.

 

As an adult, I "mask" alot. I get very embarrassed when I don't know someone's around and I give free rein to my grunts or grimacing -- but, oh well, what the ######, at a certain point you just have to move on. After watching videos of myself, I have to say I've gotton very good at not ticcing while I'm aware that anyone is watching me, or I'm looking someone in the eye.

 

In my late teens/early twenties I decided to "stop being a professional Tourrette's patient" -- withdrew from the UCLA research and therapy program, refused all drugs, looked into alternate healing, and move on with my life and career. My doctor offered to put me on disability at that time, and I said no. I've always let people know I have Tourette's if they ask, but I had so much more I wanted to do. I had no trouble after that with dating (dated few well-known actors and musicians, thank you!).

 

Have I found any alternative treatments that help tourette's? Besides enough sleep and stress reduction, no. I feel that I'm hard-wired this way; it's not a matter of supplements, fasts, cleanses, etc.... (all of which I've tried).

 

Am I coping well with it? I don't know -- I guess so. It's terribly depressing and embarrassing at times. But I guess I've done well enough.

 

But, really, I can't stress enough -- the best gift you can give a child with Tourette's is to keep it all in perspective. Those of us with disabilities tend to over-achieve in other areas. Which can make us very interesting people.

 

Hope that helps --

[Guest Guest]

Hi Monkeygirl

 

Interesting and useful information from you! Thanks for sharing.

 

1) Is there TS in your family? Do your parents or immediate relatives have it? They say TS is hereditary and hence was wondering.

 

2) Did you have ADHD too?

[Guest Guest_efgh]

Hi Again

 

good to read your experience. great to know that you are doing so well. I think your attitude is excellent and hence the success.

 

Was your coprolalia there only from age 5 to 6 and then disappeared at around age 6?

[Chemar]

But, really, I can't stress enough -- the best gift you can give a child with Tourette's is to keep it all in perspective. Those of us with disabilities tend to over-achieve in other areas. Which can make us very interesting people.

 

monkeygirl.....it is a great pleasure to read your posts

 

you have a great attitude and are clearly very talented.

 

My son is 14 and also very musical along with a bunch more special talents and a really great sense of humor plus a deeply caring nature...he firmly believes his positive, upbeat attitude has helped him most to live with Ts/OCD......when he went on Haldol 4 yrs ago (ugh!!!) it robbed him of those traits and really zombied him, along with a bunch of other nasty side effects...he HATED it and came off meds after the docs had experimented with a few others and he just went from bad to worse!

Since being off meds, on supplements and mostly, just "moving on" he is doing wonderfully academically, socially and in all the areas of life that matter to him.

 

He will be delighted to read your posts when he gets in later.

[monkeygirl]

Thanks, everyone, for such support! It's nice to be able to talk about it after all these years.

 

I remember only having copralalia around the age of 5 or 6..... the echolalia came and went in the following years once in a while.

 

I've noticed my thought patterns tend to have echolalia -- does that make sense? I think it also has to do with why Tourette's patients are often gifted musically -- you recognise and repeat patterns incessantly in your head. It's often diagnosed as OCD, but I can't say I have that. I do become all-consumed by something if it intrigues me. I also was quite a punk rocker in the late 1970s/early '80s -- the lack of inhibition was exhilarating -- and freeing. I mean, if it's not socially unacceptable to say "F*** you" to authority, then a tourette's patient won't find the need to do it, right? Tourette's is very much a disease of inhibitory response problems....if you feel free to be as punk as you want, it does something. This gets more and more convuluted, if you think about it too much...

 

Family links? I believe my older brother had a mild case -- he rolled his eyes all the time, still does. My younger sister was extremely OCD, with extreme night time rituals and handwashing and all the classic symptoms. My family was in denial about everything, so my siblings weren't diagnosed officially. I guess my case was hard to ignore

 

I don't think I had ADHD. I was always able to practice my piano for many hours a day, even at a young age. It was soothing to work on a problem over and over until it smoothed out. However, I had trouble sitting still through movies or concerts; it's still hard for me to sit still now, but I find regular exercise really helps this.

 

Haldol and the other drugs were a nightmare for me, too! I'm glad your son is happy off them.

[Claire]

Hi,

 

Just wanted to update everyone on jcandkc who started this link. She and I email eachother off line occasionally. She told me that I could tell you that her daughter with the eyeblinking had eyelashes growing down into her eyes. After months of opthomalogists telling her that the lashes weren't causing the eye blinking, she was finally brave enough to trim them.

 

Voila! No more tics. They decreased right away and then completely cleared up within 3 days, as the cornea got healthy again. She continues to trim them and it has now been 1 month with zero tics for her daughter, after months of non-stop eye blinking. ))

 

She is not 100% relaxed yet. Her daughter reacted strongly to TV, and she isn't sure whether it was the eyelashes creating greater issues from staring at the TV and not blinking enough, or from some trigger from the TV. Someday, she will try, just not now.

 

Claire

[monkeygirl]

Wow! That's wonderful! I wish my blinking could be cured so easily!!!

[Guest Guest_jcandkc]

Hi Everyone:

 

Thank you everyone for sharing your stories. You have all been so helpful and inspirational.

 

My computer was broken and we finally got it fixed. Then I lost the link to this site. So I'm back.

 

Yes, Claire39 was kind enough to update everyone about my daughter. She is doing much much better. Zero tics. Yes!! Claire stated everything well. We know that eyelashes were a problem for her. Now I am trimming the problem lashes every few days. I have to stay on top of them so they don't grow stubbly and poke her cornea. She no longer rubs the outside edge of her eyes. I no longer have to worry that she will get an eye infection from her touching her eyes so much. The eyelashes were rubbing her tear film which made her photosensitive. I can't get to all the eyelashes. So I curled all the other lashes every morning. I find that washing her eyes, turning on a small heater aimed at her, brushing her hair, putting lotion on her face, and then returning to curl her lashes (heater has a chance to dry her lashes a bit and then heats the lashes while I curl) works the best. It is time consuming. That I know. But I made a promise that I will be the best mom I know how. Everyday I try. I'm proud to say that I try very hard.

 

Whether we are in the clear... I don't really know. Our neurologist said the eye blinking could be an "eyelash problem only, an eyelash problem that triggers her to tic or a ticcing problem only." She also said that some people's tics are triggered by exciting videos and video games. She said to avoid those if she is having eye blinking problems. I guess she means that flickering lights or something can trigger not only seizures but tics. It makes sense b/c both (seizures and tics) are neurological problems.

 

I have not asked her about the LCD monitors vs. regular tube TV/computers. LCD montors are supposed to be better for the eyes since they are non flickering. But aside from the monitors, I believe it is the content of the videos (TV) that are of concern also: changes of light (from scene to scene), fast moving objects, swirling patterns, flickering lights (camera lights, explosions, etc). Our pediatrician mentioned that studies have proven these things can cause seizures. He also said that tics have to be stimulated. Eyelashes and TV can both be stimulus.

 

I will ask our neurologist (if and when I see her) if LCD monitors with static programs (MS excel, MS word) are okay. I will also ask her if LCD TV is a no no b/c of its exciting videos. Right now, we are avoiding all my daughters triggers. So far so good. As a result, she loves to read, read, and read.

 

The good news (if there is one), our neurologist said that eye blinking tics can be helped with meds or botox. She said botox is very effective but painful. She recommends that only when they are older and can make that decision. She also told me most tics just go away by itself. Not to worry. That tics are small stuff.

 

Thank you everyone for all the alternative suggestions. If (pray that it doesn't) my daughter's eye blinking problems come back, I will try the alternatives - vitamin supplements in higher dosages, no artificial flavors, etc...

 

As for worrying. Thank you for reminding me not to worry too much. I am a worry wart. My husband says I go into the 'what if' phase. I posted on the harvard forum about getting jobs. I was going through the what if phase. But in this case, I do worry about her future quite a bit.

 

Again, thank you everyone. I have read all your posts and am deeply touched.

[Guest TATER SALAD]

HI I am a 15 year old boy and I have eye tics, they are getting the best of me, I try to hide them at school but it is very difficult. I have read alot about them but nothing i know can help them go away. I first had facial tics in 4th grade and they stayed for about 3 months then went away and came back in 6th grade but as eye tics, and stayed again for about 3 months, and again in 8th grade, and now I am in 10th grade, kinda repeating themselves. I do not feel it is all due to stress. I was reading about some meds for it, execpt i looks like there are more side effects then i want to deal with. PLEASE if you have any suggestions on how to make it go away. I am willing to try anything. I read they are genetics except I dont know any other realatives that show signs of touretts syndrom.

 

you can post back here but i would prefer a e-mail at

Staticxfan223@aol.com

Thanks again

TATER SALAD (I do not want to give my name)

[Claire]

Hi Tater,

 

My son is private about this matter also.

 

I encourage you to read more on this board--there is too much to put all in one post.

 

This is a lot for a 15 year old to do on his own. I would just say that there are doctors out there who have had great success in treating this without drugs. Those of us here avoid drugs and are trying other methods. Some have been very successful.

 

If your parents have insurance, we have posted doctor list to find a doctor in your area. It is pretty expensive though!

 

During these times when you have tics, do you notice them getting worse during or after computer/TV/video games? If so, one quick thing to try is to stop TV and computer and movies for a week (I said quick, I didn't say easy). My son's went away 100% after this. If that works, you can switch to smaller flat screen monitors that don't flicker.

 

Good luck!

Claire

[Guest Tater salad]

THanks alot for the post.

I will try no tv for a week. because i am willing to try just about anything.

No I do not notice a big difference when i am watching tv or playing video games, because today i was out side alot today and driving around the Atv and still was doing it some. But if you say your son stopped 100% i definetly will try. Starting at 8pm lol i have a show i want to watch. We already have flatscreen tvs. I have a 20" and my parents a 27. I dont know about consulting with a doctor yet. I havent read much online about what they did to people besides take tests and perscribe meds. Plus we just moved in to a big new house and havent sold the old one so money is a smitch tight. So if you want to reply to this I promise in one week from now I will check the board, because I will stay off any screens. So if you write back i will not see it for a week. Thanks

[Guest Tater salad]

THanks alot for the post.

I will try no tv for a week. because i am willing to try just about anything.

No I do not notice a big difference when i am watching tv or playing video games, because today i was out side alot today and driving around the Atv and still was doing it some. But if you say your son stopped 100% i definetly will try. Starting at 8pm lol i have a show i want to watch. We already have flatscreen tvs. I have a 20" and my parents a 27. I dont know about consulting with a doctor yet. I havent read much online about what they did to people besides take tests and perscribe meds. Plus we just moved in to a big new house and havent sold the old one so money is a smitch tight. So if you want to reply to this I promise in one week from now I will check the board, because I will stay off any screens. So if you write back i will not see it for a week. Thanks