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
