I am a 21 year old disability advocate who uses this channel to talk about PANDAS/PANS, Lyme, Tourette's, Autism, and Chronic illness. I hope you find something here that helps!
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Actually we all have real tics - I have Tourette's and PANS, one girl has functional tics, and the other has Tourette's as well. Stop sidelining those of us with more complex tics just because we don't fit into your box of "what people with tics really look like."
I am not sure if this is what I have but I have a tic where I strain my throat but kind of “sucking in” and then straining my chest and it’s absolutely horrible, it makes me lightheaded and I don’t know what to do
I was referred for CBIT when I was diagnosed with TS as an adult, and I chose not to go because from the information I've read and clips I've seen of the therapy, it isn't anything beyond what I've learned living with undiagnosed tics - suppression and redirection. I know how not to "give into" the urge to tic, but the problem is that it doesn't really solve anything, it just allows me to appear normal to people. I am not bothered by my tics when I'm alone, even when they are quite bad. I want to be accepted the way I am - I don't need a "cure".
@ChronicAdvocate As an AuDHDer, YES!!! The best I've got is my speech therapy "Teen Social Group". Yeah, it's basically just listening to one of my friends say the most messed up stuff, but yeah. It's nice!
oh my gosh. as soon as you talked about phantom tics I started smiling so hard. not that they're "amazing* or anything, but because I have literally never heard anyone else describe exactly what I'm feeling. I've tried so hard to explain it to family, therapists, psychiatrists, Google, but it just never made sense. thank you, thank you, thank you for letting me know I'm not alone. ❤
This type of tic destroyed my marriage. It didn't have to, but the controlling, manipulative jerk she is, and being extremely self-righteous with an insistence on always "acting appropriately" (other than her emotional fits to leverage control), all of which was probably some form of OCD scrupulosity in her, she always assigned darkness and sin to my words and actions that were "crude" tics. What made it worse was an obsession with the "Love Languages" from some books she read, and since she claimed "words of affirmation" from the philosophy as her requirements to feel loved, she thought of crude tics as the opposite of affirming words, since it was so offensive to her more righteous sensitivities, so I was being extra messed up. I knew she needed compliments and poetry but gave her offensive words to have to hear instead, how awful of me. My attempts to get her to understand by sharing information like this in videos and articles, so she could know I'm having a tic and not hating on her, were all in vain -she never watched or read or listened to anything, claiming it was all me making excuses and even claimed I was trying to control her (with information), or instruct her how to serve me, and I should just go get treated by a professional if I really had something, and it would be fixed so she wouldn't have to deal with it. She sort of believed me that I had OCD and Tourette's, but she didn't believe the extent of it, thinking I was leaning into it as excuse to be crude, and there was still a darkness from me that turned the coprolalia crude instead of just being benign tics. Thank you for speaking about this and getting the word out, but you can explain this as eloquently as human language can make possible, and people still need to open their hearts, minds, and eyes to the truth of it and just accept what doesn't always make sense. They have to stop making assumptions and correlations and accusations that project their own insecurities onto strange behavior.
I'm so sorry - your ex sounds so judgemental and it's a shame that some people just refuse to understand. It isn't your fault and you didn't deserve any of that.
I am kinda ashamed to ask my mom to buy me one so I just buy the chewing toys for baby’s and put them on a necklace 🤌 but I am not ashamed to use em in public:3
It is still called PANS, there are many adult PANS advocates in the community, the NIMH took away the age restriction so despite PANS having Pediatric in the name, it can impact adults too. Many people don't get diagnosed with it until adulthood. I'm 21 too. Some people prefer the term Basal Ganglia Encephalitis (BGE) as they feel it is more inclusive to adults.
Look into the Cell Danger Response. Couple of papers and youtube videos (naviaux lab). Along with the book "Toxic" by Neil Nathan. Basically even if the trigger is removed the healing cycle can still be stuck and things like rebooting the bodys systems and future antipurinergics will address that
I have a drug induced tic disorder that seems to be permanent. I automatically suppress around people and only minor ones come out. I don't know how to stop doing it and I'm afraid to with how nasty some of my vocal tics are.
I blow all my air out of my nose with a like double exhale. It cramps my chest and hurts sometimes so I try to be mindful to stop. I used to clench my core and do the same sort of a few years ago, but it went away
Thanks for this video as I really struggle with chewing on my tongue which damages it. Since getting my chew necklace it has been great. 👍🏻 I am even chewing it while watching this. :)
Such an amazing clever articulate person. You have really helped us with your video, so informative. We have only found out about this recently and our son has shown these symptoms since being very young but he's now an adult and on Antipsychotics due to miss diagnosis and our GP and Early Intervention Team have never heard of Pans/Pandas. Much love and blessings to you ❤ 🙏
Hi, I wanted to apologize, I was not aware of anything I was saying and was projecting my negativity onto other people. Completely on me and it was out of line. I apologize
Guess what though? Autism isn’t an excuse for being rude. Autism isn’t an excuse to be an asshole. I’m kind of tired of seeing people cover for aspies that are just assholes
I agree - I have been abused by other Autistic people, however sometimes it's just a human mistake and the autistic person needs things explained to them rather than being demonised for something they're not even aware they did.
Autism isn't an excuse for abuse especially if the persons already been told, but at the same time if its something unintentional and you haven't told the person why that's harmful or its something that isn't really harmful or abusive like not making eye contact then that's not the same thing at all.
I must have watched a reel that mentioned tourettes, and decided to try and get a quick better understanding as to the causes/why. Did learn then about coprolalia. Enjoyed your video to help me better understand it, and how it relates to tourettes.
