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Anyone else here with a tic disorder (ie; Tourette's)?


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Hi everyone

 

I am a male in my 40's and I have Tourette's Syndrome. I have had it since I was a small child but as an adult it has gotten considerably worse. For years it would manifest itself as an up and down (as if nodding "yes") head/neck jerking tic (sometimes very violent) but recently I have developed a side to side (as if nodding "no") head/neck jerking tic which is even worse. I have never shared any of this with anyone except family and close friends because it is supposed to be a rare disorder (especially in those who have it into their adult years) and I don't see much in the way of online support groups.

 

My tics were once fairly easy to manage but it has gotten to the point in the last few years that as a result of the constant head-jerking I have begun to feel "punch-drunk", woozy, loopy, spacey, foggy-headed, off-balance, etc when I have them. Almost as if I've given myself some sort of mild brain damage. Sometimes, after a particularily bad bout of tics, this feeling can last for days along with vision issue (ie; buggy, unfocused, overlapping vision).

 

I've had all the tests (shoeboxes full!), tried Haldol/cogentin, seen a neurologist but there is no cure from what I understand and so I have to just live with it. Recently, I was prescribed Clonadine. I should also mention that I have cervical arthritis with a bone spur (C4 + C5). Perhaps this is the result of constant head/neck tics over the years. I don't know. I also suffer from anxiety, panic attacks, sinusitis, allergic rhinitus, IBS, GERD and a whole slew of other things.

 

I guess the point in writing this is to ask if anyone here (including friends and loved ones) has experienced anything like this with a tic disorder where the constant tics give you a feeling of being woozy, foggy-headed, loopy, spacey, light-headed, off-balance, etc. I'd also be interested in knowing if there are any really large and active Tourette's (or tic disorder) support groups or forums that I can join so that I can relate to others who are going through the same thing.

 

Thank for reading this and for your support.

 

- BlueJays

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Hi and welcome

 

yes, this forum is specifically here for people who have tics and Tourette

 

We focus mostly on natural, alternative and complementary treatments rather than just medications

 

I would suggest you start my reading our Helpful Threads pinned to the top of the forum

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I am on Clonidine. I have personally found that the Actavis brand has significantly less side effects than the Mylan brand.

 

This forum focuses mainly on non-prescription treatments but if you are interested in seeing a list of known prescription treatments along with side-effects and some results, please visit this site:

 

http://www.tourettestreatment.com/list-of-treatments.php

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Blue Jays,

 

Have you tried any alternative treatments? My son does take meds, but I think is successful because of the supplementary supports he gets. He goes to the chiropractor (might be good for the physical pain in your neck and arthritis as well)and biofeedback each 1 time a week. He also had bloodwork done to determine food sensitivities, so we avoid those possible triggers as much as possible (diary, soy, gluten, and sugar). When he gets older, I am interested in seeing about cognitive behavioral therapy. If you're interested, Google CBT and Tourette's; I think there are some pretty promising studies done recently in helping with Tic disorders. Depending on your insurance coverage, some of this may/should be covered.

 

Try the Tourette's Syndrome Association website: http://www.tsa-usa.org/

 

This is how I found our local support group, and I HIGHLY recommend it!

 

Good luck!

 

Eve

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  • 2 weeks later...

Hi, My daughter 27 years ago had 5 or more multiple tics going at the same time. Mostly facial. It was frustrating because I didnt want her on drugs. It took me ten years to figure out what caused it. citrus,chocolate,DYES worse, caffeine.cheese,milk,eggs,pizzas. If she drank a lot of water after eating these than they would calm down. Now at 28 she hardly ever has them unless she eats these types of foods. Latitudes really helped me when there was no internet long ago. Doctors didn't believe the tics were caused by food. When she had surgery for her back they went away completely for a few days. Not sure why. It was nice for her.

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welcome cinlou :)

 

I found help the same way many years ago now .....I was at a friend's house, with my son in major crisis from the combination of intense tics and OCD, and she had a copy of Latitudes magazine on her table. :)

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welcome cinlou :)

 

I found help the same way many years ago now .....I was at a friend's house, with my son in major crisis from the combination of intense tics and OCD, and she had a copy of Latitudes magazine on her table. :)

 

I didn't know Latitudes was a magazine!

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welcome cinlou :)

 

I found help the same way many years ago now .....I was at a friend's house, with my son in major crisis from the combination of intense tics and OCD, and she had a copy of Latitudes magazine on her table. :)

 

I didn't know Latitudes was a magazine!

 

I now realize my daughter's OCD about throwing up may be related to the tic disorder. Can't seem to help her with this. Any suggestions?

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Hi everyone

 

I am a male in my 40's and I have Tourette's Syndrome. I have had it since I was a small child but as an adult it has gotten considerably worse. For years it would manifest itself as an up and down (as if nodding "yes") head/neck jerking tic (sometimes very violent) but recently I have developed a side to side (as if nodding "no") head/neck jerking tic which is even worse. I have never shared any of this with anyone except family and close friends because it is supposed to be a rare disorder (especially in those who have it into their adult years) and I don't see much in the way of online support groups.

 

My tics were once fairly easy to manage but it has gotten to the point in the last few years that as a result of the constant head-jerking I have begun to feel "punch-drunk", woozy, loopy, spacey, foggy-headed, off-balance, etc when I have them. Almost as if I've given myself some sort of mild brain damage. Sometimes, after a particularily bad bout of tics, this feeling can last for days along with vision issue (ie; buggy, unfocused, overlapping vision).

 

I've had all the tests (shoeboxes full!), tried Haldol/cogentin, seen a neurologist but there is no cure from what I understand and so I have to just live with it. Recently, I was prescribed Clonadine. I should also mention that I have cervical arthritis with a bone spur (C4 + C5). Perhaps this is the result of constant head/neck tics over the years. I don't know. I also suffer from anxiety, panic attacks, sinusitis, allergic rhinitus, IBS, GERD and a whole slew of other things.

 

I guess the point in writing this is to ask if anyone here (including friends and loved ones) has experienced anything like this with a tic disorder where the constant tics give you a feeling of being woozy, foggy-headed, loopy, spacey, light-headed, off-balance, etc. I'd also be interested in knowing if there are any really large and active Tourette's (or tic disorder) support groups or forums that I can join so that I can relate to others who are going through the same thing.

 

Thank for reading this and for your support.

 

- BlueJays

 

I don't have tics but I did have that spacey foggy-headed. light-headed, off balance feeling for two years. Found out I was addicted to those International coffees at the grocery store and it took one year after stopping those and eating better for all that to disappear. I could hardly drive because I couldn't focus. Also, this made me have panic attacks. All gone now.

I

Edited by cinlou
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This is interesting because we at home have been eating better b/c of kids allergies. But I do cheat and I get the spacy off balance symptoms that have had a couple of panic symptoms. I assumed its from the stress of everything within the last three years. But I do notice if I eat something it gets worst. I feel more stressed. I am so into the kids and my diet being all different now I wonder if the foods I have that I don't typically have make this worst. I have been keeping an eye on this and I agree with you. It's the food I eat that makes me feel worst at times.

Mar

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  • 7 months later...

Hi, I am new here as well. I related to a lot of what you wrote. I am 57 and my tics have worsened over time. I also hid it from everyone in my life until recently when my meds stopped working. I am also having trouble finding support groups for adults with TS. The focus seems to be mostly on children, and I believe adults have additional issues.

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