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reminder again that anxiety, ocd, autism, adhd, trauma, fnd, pandas/pans, etc., do NOT cause tics
if you have tics you have a tic disorder
if you have at least two motor tics and one vocal tic you have tourette syndrome
also remember that there's a lot of different types of involuntary movements
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Do you know of any good research on functional tics? Im having a hard time finding actual scientific research on them
The evidence for functional tics is quite poor.
A lot of the "studies" on it came out during the pandemic when people were convinced tiktok could magically give teenage girls neurological symptoms. Its rooted in misogyny, and are actually pretty damn anecdotal for something thats meant to be scientific.
Here are some studies; but please take them with a grain of salt.
Our data from the largest multicentre registry of FTLBs to date confirm substantial clinical differences from primary tic disorders. Social
We observed a meaningful improvement in tic severity scores in youth and adults with FTLBs over a period of 6-12 months.
There's a couple more but again; a lot of these studies are SEVERELY flawed and lack a fundamental understanding of how tic disorders can present in females, and just an overall misunderstanding of the wax-and-waning nature of Tourettes syndrome. Pretty disappointing from papers claiming to have "experts".
Sorry about this, I just need to rant. Developed tics when I was 17 (now 19), was slow for about 3 weeks then exploded, havent really calmed down since. At its worst I couldnt go 10 seconds without ticcing. Went through the whole medical process and neurologist came to conclusion it was FND presenting as a tic disorder. Went to PT, it helped a little bit, got referred to 3 therapists all who said they couldn’t help me, got referred to PT again (but didnt have time in my schedule). Tried all the things recommended to reduce them, all the people I know ignore them, I never really engage with tic related content online, I try to distract myself but it feels like theres nothing I can do and ‘experts’ are just as lost. Dont feel like I fit with others with FND because my symptoms are so different and exclusively ticcing and I dont know what to do. If this is permanent I can accept that but I just wish I could know that for certain.
Hello there! That must be frustrating!
Personally, I find its typically laziness that leads to an FND diagnosis (especially in AFAB people) when it comes to tics, especially with the absence of other FND symptoms.
17 is definitely still young enough to be diagnosed with Tourettes or a tic disorder and even if it has happened after 18, again with the absence of other FND symptoms, the diagnosis of Tic Disorder Not Otherwise Specified, would still be appropriate.
However, supposing it is FND tics, beyond PT and maybe OT, there are unfortunately no medications that treat psychosomatic tics, and the best recommendation would honestly be therapy to learn coping skills and acceptance.
I suggest seeing if you can find a therapist how is trained in CBIT if you have premonitory urges before ticcing, because they can help you identify the urges and replace tics with less damaging movements or sounds.
You're absolutely doing everything correctly in terms of limiting exposures but even with FND tics, thats sadly not the 'cure-all' some doctors want to push it as.
I'd be curious though, to see what would happen if you got a second opinion from a different neurologist. There are medications that can help with Tourettes and tic disorders if there happens to be an organic brain cause. Or even just bringing up trying a few of the medications with your current neurologist regardless of the FND dx. The pro's may outweigh of the cons when it comes to meds if daily life is becoming unmanagable and nothing else is working. Could be worth a try!
Good luck!
