i’m back!! random monday upload because i’ve had to take a few weeks off when my flare-up got pretty bad but i finally got this edited today! 🫶🏻 feeling thankful to be able to sit up, get out in my wheelchair and finally get back to editing/gaming and chilled activities today 🥹👏🏻
thx for this video i also have tics and at school and public i try and keep them in and it does hurt i also have neck tics when i try hold them in even after it still hurt a bit and stuff i only try and tic in the car and at home where i dont feel awkward cause i just feel like weird in public and school having 4 special needs my tics are one of them tho but i honestly hate tics but when i hold the neck thing in i then start blinking and my arms feel like they are going to move and stuff and i thought i was the only one who feels pain in my neck tho
Zara me my mum and dad think my tics are currently acting up cause of stress its just the uhm neck tic tho cause today 06/06/24 my cat passed away AND HE WAS MY FAV CAT so i have my other cat coming to me every time im downstairs but from now on im just going to be sad on this day each year i miss the poor cat so we think that may be the reason of my tics stress but i dont feel stressed but we think thats why cause of what happened to the cat
I met a young lady years ago, that had to wear a mouthgard and was not able to drive. We were walking with her and she would stop and turn around and go the other way for a few steps and then jog back. She was at risk for walking out into traffic. She didn't swear, but she did shout "I love you" and people on the bus were not happy with her. :(
That's always been a major fear of mine because my tics go along with stress in my life. I am the stay at home parent, and being unable to drive would ruin my family
@@greenliter1 A random person shouting it, though? I would think they were high or manic (and I say that as someone who's been through half a dozen manic episodes)
I’ll never understand people who think Tourette’s (or any other chronic/neuro condition) is fun or funny. None of this looks like fun to me. It looks painful and tiring. Thank you for advocating and educating kindly and effectively! ❤
@@swingbat6776 it is painful. And if you do a tic, consistently for so long, it just...hurts!! Even vocal tics. They can make the head hurt depending on what vocal tic(s) you have.
I'm so glad to see this adressed. I don't have Tourettes (my tic disorder hasn't been diagnosed) but i do have really bad tics and they can cause me so much pain! I have the same neck tic and it is so difficult.
Zara Beth, do you realize how articulate you are? Even with Tourette’s you are so articulate that you might consider doing voice-overs for others. The tics can always be edited out, but clear articulate voices are few and fare between. I appreciate what you are doing, I learn from every one of your videos .
Hi I was Just diagnosed with Tourette’s today, I’ve been watching your videos for a while now I was aware of it all so when the neurologist brought up Tourette’s and FND I knew what she meant, I just want to say thanks for being amazing
@UCuTsFckHTfVfoh8UlYJ4IxA I am so impressed with your maturity and insightful message on your channel. I am a retired university professor of chemistry (Ph.D.). I taught for nearly 40 years. I have 3 living adult children (between 35 and 40 years). I lost a son 7 years ago to a fentanyl overdose. I have been an educator my entire life and admire persons who are interested in furthering knowledge. Zara, you are doing a wonderful service to those of us who are not knowledgeable about Tourette’s Syndrome, FND, autism, etc. please know your message and delivery are exceptional. You are having an impact. Please keep doing what you are doing. ❤️
I don't have Tourette's but my neck sometimes bends back or off to the side when it's not supposed to. It's more annoying than painful, and I can usually move my head back to where it's supposed to be in a few seconds. It also seems like some kind of stim, because it happens more often in overstimulating/uncomfortable environments. Sometimes, I get (painful) neck spasms when I yawn. They bend my head forward, and I have to wait for the muscles to relax again before I can do much of anything else. I can't imagine what it's like to have to go through painful neck twitches multiple times a day. ❤ That neck crack sounded really painful 😢
I have something similar however, it has slowly developed into tics these are caused by my anxiety and ADHD. So I tic when I'm over/under stimulated, overtired, bored or have been sitting still for too long, when I'm anxious or when I'm stressed. They started with small motor twitches and neck twitches and have now become worse and I have now developed vocal tics. I relate to this video a lot and I'm so glad she has talked about this side of tics.
@@aquaidelic6424 Just for ur information, anxiety and ADHD can’t cause tics, you can most definitely get twitches but full on tics are caused by an underlying tic disorder. Anxiety, overstimulation, boredom etc. can all worsen tics, so you might only notice them when you’re experiencing those things, but anxiety/ADHD it’s not the root cause :)
a big difference in stimming versus tics is that stims are (usually) voluntary! stimming is used to regulate the nervous system which is why a lot of people stim while uncomfortable or happy (either way, big emotions can = big stims) but tics are not voluntary which sounds more like what you’re describing! you can have tics without having tourette’s i believe
@@deinodinosuchus I did some research and found out that you were right! It seems that tics which don't result from a tic disorder can be caused by anxiety, which may be why I thought it was a stim. There also seem to be a lot of people who have tics but don't have Tourette's either because they don't meet the criteria for a diagnosis or because the tics are resultant of another disorder, such as Tardive Dyskinesia. I have also realized that caffeine definitely does not help with my tics, which is a similar observance to a study done on adults who have tics 😅
@@earth- I've done my own research and also been told by many doctors and phycologists that my tics are a symptom of my Anxiety and my ADHD stimulant medication. I only experience my tics at these times and on my stimulant medication. I will however, go back and check with my doctor about a tic disorder just incase thank you!
I was diagnosed with Tourette Syndrome last month; thankfully it's mild for me and my tics haven't been painful, although I do find them embarrassing and distressing, particularly in public. I am grateful that you spread awareness about so many aspects of living with Tourette's as well as how it interacts with your comorbid conditions, I think education about comorbidities is super important. Take care, you're amazing 💚
I hope this isn't inappropriate but you have a beautiful soul. Despite all the challenges you face every day, you keep on going, radiating confidence and happiness in the face of adversity. I've only recently started seeing your videos and you are a such a wonderful young lady and amazing ambassador for those who, like yourself, have to deal with the daily issues that TS brings. You've managed to gain a great education and I hope that you are able to continue to shine your light to those of us who have never experienced the pain of Tourettes, I myself have never met anyone with the condition so it really is an education for me. I've seen many videos of people with Tourettes and it's nearly always glorified and without proper explanations on the condition. Your videos are a fantastic educational tool because you go deep and tell everyone how this effects you, and others. I wish you well on your journey of life Zara, keep doing what you do and thank you fpr sharing your life with us all. 🙂🙂🙂
You are such a calming person for me to watch! Thank you. For being vulnerable and honest on the internet and spreading awareness for us less brave to express what we struggle with. Your work is appreciated. Take care of yourself ❤
I’m sure a lot of people laugh when they hear you swear. I’m sorry that you have to deal with a lot of pain, due to your ticks. I know I’ve laughed when you swear. I’ve never met anyone who has ticks. I’m learning so much from you ❤❤❤❤.
@@Mynameis_lizzy same. You sometimes just can’t help but laugh. When you hear someone just swearing and saying some crazy stuff. I’ve learned so much from Zara. She’s just amazing ❤️.
Hi Zara. I just wanted to say I think you’re such an inspiration. I don’t suffer from Tourette’s myself but I do have a seizure disorder and your videos help me every day to keep me positive and keep me working towards my goals. Since discovering your channel I have achieved my dream of teaching myself to play guitar and writing and releasing original music. Keep up the great work.
Thank you for all your insights and spreading awareness 😊 I can barely imagine how painful and stressful a life with Tourettes must be. You and everyone else dealing with this are amazing people and heroes in our world 😊 Take care ✌️
Thanks so much for this video. I have both Tourettes and FND also. I live in a group home and unfortunately, people around me aren't always understanding and sometimes I deal with people purposely triggering my tics or seizures. I am so glad I found someone who completely understands the struggle. Sending you so much love ❤️
I've watched about 20 of your videos over the last week (some dating back 2 years). At 43 years old, I'm now more EDUCATED, TOLERANT and UNDERSTANDING towards what tourettes really is thanks to your channel. PS. I had to google what FND was. Keep raising awareness and sharing your very difficult story with us please. Scotti P Proud Ally and Subscriber
I really love your channel because you inspire me and I have learned so much about Tourette’s and FND and autism and you just light up my day! As a girl that has grown up with a brother with Tourette’s, Adhd and Autism I kinda know your stuggle even though I don’t have any connection to having tics or anything like that but still your channel means so much to me the day I found your channel I felt so blessed! Thank you so much for spreading awareness for everyone! You are doing Gods work ❤️ Happy Tourette’s awareness month! 🩵💙 (sorry could not find a dark teal/blue ribbon) ❤❤❤❤
I have anxious tics and the most painful one for me is when my head turns really quickly because it makes my neck click but luckily for me it doesn't happen often😅usually mine are just these loud noises I make, leg shaking and quivers
I understand the pain you talk about from ticking, I don't have tourettes but I do have damaged nerves and muscles and that combined with medication side effects have created very painful tics and twitches, the sensation you described right before a tic attack is very accurate.
The neck twitch really does hurt quite a lot! I already have joint pain, so it really doesn't help. I also relate to other topics you talked about and shown in this video, and it was nice to hear about other people's experiences.
this video is really informative and everything is very well put! next time someone asks about this i'm just gonna link them to this video bc you explain it way better than i could
This is such a great quick breakdown of tics. I have been diagnosed with FND and they just summed up my tics as being apart of that but I relate 100% to everything you have said even though it is about Tourette's. Basically the only reason I didn't get diagnosed with that is that It started when I was 19 and I'm now 23 so yeah anyway really great video and I appreciate your advocacy.
thank you so much for this.. its nice to hear another person talking about the injuries and chronic pain associated with tics... its something i was always in denial about and thought my pain wasnt valid bc it was somehow self inflicted. and lots of friends and even doctors dont understand the amount of pain im constantly in.
Gosh your amazing, I have FND and my functional tics hurt like crazy some are just huge joints or just neck twitching from a range or light to ones that hurt. I make some noise but I've tried hard to hold them back but that doesn't work. I watch a range of your videos because of FND and I have it and my right is mainly attacked by them, and my sight is affected. I wish I could talk to someone or a group about this. As I am alone and I just don't know what support I need going forward. Keep help getting the FND message out there, it's helped me more than Drs themselves.
I'm slowly heading towards FT wheelchair use due to the pain from my tics. I've been a part-time w/c user for ~8 years. I'm 37. My back pain started at age 16. It's really difficult, but I'm doing my best to live a "normal" life!
As someone who has Tourettes I can say this is 100% accurate. Thank you for shining a light on the fact tics hurt and how suppressing tics causes more painful tics in the long run. Thank you for showing me that I am not alone in the chronic pain and everything else in between.
I had never quite put the two and two together that just talking about tics can trigger them! Although it can be a difficult topic, it still feels good to be learning more about myself, so thank you very much for sharing this :)
Thank you for sharing your experience. Although I don’t have Tourette’s, I am autistic and can relate to what you said about emotional pain. Like you said, there is so much that people don’t see behind the scenes. Your videos have helped me realize that it is okay to slow down and take care of myself. Take good care ❤
When Zara is talking about the emotional pain that comes Tourette's, I'd like to know if you would often feel shame and poor self image? I know that's an awful thing to ask. I have ADHD and it's only just now at 33 I'm starting to let the shame go. You know, like, "I'm acting strange, and everyone is watching and judging me". Please know this question is coming from a place of curiosity and compassion. Love your videos ❤
Just wanted to say that you articulated this so well. You’re an excellent educator. I’ve learned so much from you. Thank you for sharing yourself and your life with us. Your authenticity is refreshing and your positivity is inspiring. Blessings for health and happiness. 🙏
Thank you Zara Beth. I thought I understood a little, and now realise that I know nothing. I just hope you realise how much your videos are educating people like myself. ❤❤❤❤
I have a tic where I grind my teeth so hard it has been known that I break my teeth and either crunch them up like sweets or just swallow them. the pain is intense to say the least and trying to get an emergency dentist appointment can sometimes take 2 weeks. so people who say tourettes dose not hurt can go do one. also I have never recieved benefits or help with my condition off anyone even tho I have asked for years. all my help has come from utube from videos like these. carry on the good work cos some people really need them.
Oh my god this I do this all the time...the throat and neck thing especially. I have soreness and tenderness all in my neck and throat because of it and it looks exactly the way you do it...I need to get this checked out
Thanks for making this video! I had no idea that tics could hurt you, although it makes a lot of sense now I think about it. I'm happy I know now, I guess this video made me much more aware of the severity of Tourettes and I'm glad for learning it. I think it's so useful just for being compassionate towards others to be more aware of how different conditions can affect you.
It sounds like feeling of Tourettes Tics are very similar to Twiching & involantray Movments Caused By FND . You Have Just Made Me Feel More For People with Tourettes. Because of the discomfort & Pain I Deal with Because My FND & How much What You are Describing about the sensation is so much the same for my FND & at Nerve & body level The One Thing I Must Say Is Even If It Looks or Sounds Funny To Othersers it is not . To simply have your Body Do things That You Can Feel But Have No Control Over Is Not Funny . It’s often scary & toucherious . Thank You For You’re Channel You Help Others More Than You Can Know...
I also experience involuntarily jerks and twitches from my FND. Watching this video makes me wonder if I might experience less chronic pain if I stop trying to suppress them? I don't know if they work the same way.
thank you to explain properly and show people the reality of tourettes. ❤ and, as a person who has it, i feel seen and comprehend. ❤ also ngl something is relatable and felt 😂
You mentioned that the majority of your tics are movements and noises rather than complex vocal tics. As someone with functional tics I'm curious, do you find that your complex vocal tics are more present in certain circumstances (i.e. flareup, overwhelm, anxiety/stress etc) than your baseline tics? And is there a difference in how they feel (for example do you experience the same premonitory feeling)? Of course do not feel like you need to answer at all, I'm just really interested in this stuff and I was nerding out about it with my neurologist lmao. My neurologist told me (which I am paraphrasing so any inaccuracies may be my fault) that most people with Tourette's have a very typical early presentation with mostly face/neck movements and simple noises, and that the more complex movements and vocal tics are more often functional tics. She said it was not unusual for people with an initial presentation of Tourette's to ALSO develop these more complex tics as functional tics later on in life. Personally I developed tics too late to be diagnosed with Tourette's (I was 22), so I've been diagnosed with Functional Tic Disorder. We believe it's a consequence of high stress levels and of masking my ADHD & autistic traits. I started out with neck movements, which rapidly progressed to more complex movements, noises, then words and sentences, then self injurious tics. I was really nervous about how far it would go but it seems to have stabilised. The silver lining was that I was assessed for ADHD on the NHS much faster than I would have otherwise I suppose 😅 And my ADHD medication seems to decrease my tics somewhat. Another thing for me is that I tic a lot less when I allow myself to stim! My tics getting a lot worse it's like a warning system that tells me I need to regulate
i'm not a neurologist and can't advise on any diagnoses etc, but i can say that doctors seem very unsure of the lines between the tic disorders (i've heard many people with similar presentations be given completely different perspectives and diagnoses) so i'm honeslty not sure! my experience of TS is mild tics (jaw twitching, neck twitching, coughing, hiccup noises etc) from the age of about 7, and then at 14/15 i had a massive burst in tic severity during high school which led to my diagnosis and my educative content starting. then since school finished for me, tics have calmed down again but still a moderate amount and daily hope that gives you some helpful insight? 🙂
I haven't Tourettes, but I have Restless-Legs-Syndrome. I feel the urge moving my legs coming short before. If I suppress the movement, it's really unpleasant until painful. So I can a little bit understand of your bodyfeelings, I think. I don't understand how anybody can think, Tourettes is not debilitating, a disability or even "only fun". Oh, and I'm autistic and if I stimm too much, it can be painful too, sometimes. My father (henis autistic, too but officially undiagnosed) recently in his 60's developed this neck-tick along with a strange movement of his mouth. He himself didn't noticed, but it's obvious a motoric tic. I find this coincidence of autism and various other diseases very interesting. FND, EDS (I'm sure hypermobile), ADHD, Seizures, Tourettes etc.
I also have Tourette’s and what you are saying is so true! I have Copralalia too it is vey hard I have been stained at and laughed at and even called names. Thank you for posting Zara!
i have tics. not tourettes, but I do have tics. they aren't frequent. but thank you for giving me an explanation for when I have tics I feel it coming. my english isn't well (it's my native language) so sorry if I don't make sense. and I feel the urge for my tics. anyway, nice vids!
I was first made aware of non-verbal tics, and their potential harm, thanks to Jess Thom when she was on Russell Howard's show. Iirc, she had padded gloves as she hit herself in the chest regularly, so definitely going to cause herself harm if something wasn't done to limit the effect
It may not be fun to discuss Zara, I know... for what its worth though this was an excellent education for someone who doesn't know someone directly in their (my) life with tourettes. I'm sorry you have to deal with this - and also I'm glad that you ARE you. Lots of love, and I hope you're feeling a bit better now (flarewise
Thanks for sharing. You're so well spoken! I wasn't aware of the pain with Torrette's but it makes complete sense. As does the interaction of it with FND. Chronic pain and constant injuries suck! Sorry for the long reply below. I think I shared because you've connected well. 💖 I have hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is one of the 13 forms of EDS which are genetic connective tissue disorders. Connective tissue is everywhere so so many things can go wacky. My mom is legally blind in her left eye and low vision in her right because of hEDS. I have had so many joint injuries I've lost count, plus at least 9 concussions (because apparently ankles need to work or you fall...) Yet, I've had similar experiences to yours with Torrette's with people thinking that hypermobility is a good thing. "Oh, cool you can do splits!" ... Yes, in high school I could stand on one leg, put my other above my head and touch the opposite ear. But I also lost functional mobility in my right arm and hand in what was supposed to be my last year of high school because my long hypermobile neck pinched a nerve. While I regained mobility, I still have chronic pain as well as tinnitus, and hearing loss. I also partially dislocate my jaw ("sublux") it multiple times a day (2x while watching your video). I'm an ambulatory wheelchair user because of a common EDS co-morbitiy dysautonomia. My autonomic nervous system doesn't work when I'm standing. Blood pressure drops, brain fog because of lack of oxygen to the brain, dizziness, hearing and vision get worse, digestion and nausea issues, and my heart rate can spike.
I have Tourette’s and I’m crying rn because I’m hurting myself so much and hitting others of course I’m not trying to and im so sad and in pain but my mum in going to call the doctor tomorrow ❤❤❤❤❤❤ love you ❤❤❤❤❤❤❤
I have Tourette’s and one of my most common tics is also a neck jerk. Over the past couple months it started to crack and recently when I have my neck tic it sends tingling and a numbing sensation down my arms. I wish people saw Tourette’s as more than just the tics.
My premonitory urge is often a shiver that goes up my neck, through my head and down my arms. It is extremely uncomfortable. Especially when the shiver lingers in my head. Often my bigger and louder tics are triggered by these shivers.
Hi Zara! Absolutely amazing video as usual :) ever since I watched your teen fest video few years ago I’ve been dying to go and I’m finally going to this years one’s! You’ve really helped me on my TS journey thank you
My worst motor tic is my neck tic as it has worn down my jaw joints and my neck joints to the point that crack so loud others cringe when I tic. It hurts. Sometimes if I'm not limber I'll pull a neck muscle. My neck tic is a quick / sharp shoulder to shoulder "checking my blind spots" thing so it involves my whole head and neck. Wickedly annoying.
I have akathesia. It affects my legs at night. My legs constantly want to move which keeps me awake. But if I try to force my legs to lay still, the harder they will twitch and flail when I relax.
I don't have toureytes, bit I have tics from anxiety. My neck ones were so bad during the pandemic I slipped a disc in my neck and damaged my spinal cord. Thank God, emergency surgery reversed 99% of the spinal cord damage, but it has permanent damage.
My son has those I have had them and my late mum I though torettes was effected by anxiety to I thought all tics were torettes.i have fybromyalgia CFS elements fnd heds autism ADHD
I don't have tourettes but I def suffer through tics. For me, these tics are just physical but some of them do become an inconvenience. One of them would be a random air punch and the one more convenient one would be head twitches/tils. I used to have a vocal, saying "lol" out of nowhere. Tics doesn't really hurt me. They're just an inconvenience lol
I have OCD, obviously not the same as tourette’s, but I feel like I understand what you were talking about with the tics not feeling satisfied if you put something in the way/try to redirect. This happens to me if I get a compulsive urge to do something and I don’t. Obviously, because OCD is a mental illness and doesn’t cause totally involuntary movements it’s not the same (I’m definitely not trying to make a 1-to-1 comparison). I am able to stop myself if it’s something harmful or whatever, but I just think that similarity is so interesting and I wonder if theres anything behind that
Absolutely awful condition it really is and it's sadly very often forgotten about but it is an absolutely awful condition but it's good that the tics can end up entertaining people and making people laugh unintentionally and people seem to think all those with tourettes are all really rude and nasty but that's so very far from the truth some of the nicest people I know have tourettes X so sorry you have to put up with this x
I'm beginning to wonder if I have some sort of tic disorder. Many times day, i get this shiver and i stick my tongue out and i can't help that much. So i don't know
My tics made it so I hit my friends. I’m lucky that it’s just me hitting in a direction and not my tics aiming for my friends. They luckily are all ok with it but I always feel bad.
I have FND (the French equivalent is TNF, which is the diagnosis I have as I live in France, though causes vary) I have non epileptic seizures, moments my body “gives up” and sometimes I can’t move parts of my body or speak. In addition to this I have tics, also related to my TNF. I wanted to educate some people in France as many don’t know what it is and I’m often being taken to the ER when they can’t do anything, and I feel very lonely. But I’m really scared of the hate, or people thinking I’m faking. In France we’re not given documents with a diagnosis, we are told it by a professional and treated if possible. I also, due to researching what on earth was happening to me, have a lot of tics from others. I have quite a few health issues but they’re all uncommon where I live. I want to help others like me feel less alone but I’m scared of being hated or accused of faking. How is it for you to deal with this kind of thing online? Is there a platform that is preferable for this kind of content? I’m not sure if you can answer these questions but thank you for your videos as they make me feel less alone❤️
i have one annoying ti that is blinking to hard and then idk what i do but like that i hear a weid sound in my ears its annoying and one with my fingers which might be really hard to ever get rid off
One thing I think is the most annoying is when people say, “ Your so lucky u just get to swear, I wish I had Tourette’s!” You don’t I have TS and copralalia.
So I don't have Tourette's but I have random neck jurks, and make random noises, but these don't happened every day and once it went away for a week and then boom it came back and startrd hurting so much because of how fast it happens to my neck. And they happen more at night, also my foot has started jurking to
AHHHH I have that exact same neck tic and it has hurt me multiple times. My neck is constantly sore and I have hit my head more than a few times because of it.
I would think, and please correct me if I’m wrong, that neck ticks would also hurt the spine. I also think of it as the pain that comes along with seizures.
Thank you for your educational and awareness video(s). A bit of a strange question which you may or may not be able to answer. No pressure to answer if you don’t want to and feel free to delete this comment if it is inappropriate or offensive. What are the rules/regulations/accommodations made for those with Tourette’s when travelling? For example, if someone with Tourette’s was travelling by plane and shouted the word bomb in an airport or aircraft. Surely, security can’t arrest or question you for a tic? Yet, constantly explaining your medical conditions are tiring in itself.
I have TS and hypermobility. I have found when something is out of place and causing pain my tics don't like the "abnormal" feeling and focus on that spot. So when a part of my body hurts that part will have more tics.
Thank you for doing this video Zara. I don't have Tourrettes but a tic disorder as well as other chronic illnesses. (Fibro, ddd & cfs/me + adhd)Tics can be so painful, I tic a fair bit during the day. I didn't realise until my manager told me yesterday that my tics were getting worse all last week until I had a tic attack at work on Friday (the last one at work was 6 months ago) I am still in pain now as it caused a fibro flare (which was already on it's way due to the hours I did last week) I get punchy and scratchy and a tic that throws my head back. Idk if it was partly triggered by my work friends as they love setting my tics off and between one and a customer that does it too I just got more and more ticcy until they kinda just exploded. Does that even make sense? I don't mind if people laugh at them/with me if they're funny but I've now had to get my manager to ask them to be mindful if i'm already very ticcy. I'm so sorry I wrote a rambly essay,
Hey Zara, (With all respect) Thanks for sharing this video, very educational!! That part when you got a seizure, thanks for showing that. It was really interesting and educational, to see what that looks like in that situation. That it was triggered by a tic, thanks for explaining all that! Also 10:49 where you unconscious? Hope you where ok after that🥰🥰 Happy pride month😉😊❤🧡💛💚💙💜
I’ve been having this neck jerk recently, of course, I don’t have a diagnose under anything relating to tics, but, I feel like I should contact a medical professional about it, because I feel like if I don’t do anything about it and get any other tics or weird jerks, maybe relating to my back or knees, I’m really going to hurt myself because of my back pain, neck pain and of course, knee pain. What do you think, should I tell someone about this?
Hi Zara, I have a question about the 'head drop seizure', if I can ask. I also have seizures and I'm wondering are you conscious during those ones? I have something that looks similar and I am conscious, but unable to respond or do anything and I never know what to call them.
hi! i wanted to ask tourettes community about something my neuro mentioned a couple years ago. can tic urge be something that people see intentional? i dont know how to explain but when you have this feeling of tic coming you let it but it can be seen as just a movement you intentionally make because it's not surprising and you know the tic is happening. i think I've been having tics since childhood but my doc says if i can stop them (they come later anyway tho) then it's not a tic at all. can you explain how much control you can have for tics to be valid? because i only have them like 10 times a day if it's a good day but they are still a problem and i wanna know if they're really something i should advocate for
i’m back!! random monday upload because i’ve had to take a few weeks off when my flare-up got pretty bad but i finally got this edited today! 🫶🏻
feeling thankful to be able to sit up, get out in my wheelchair and finally get back to editing/gaming and chilled activities today 🥹👏🏻
thx for this video i also have tics and at school and public i try and keep them in and it does hurt i also have neck tics when i try hold them in even after it still hurt a bit and stuff i only try and tic in the car and at home where i dont feel awkward cause i just feel like weird in public and school having 4 special needs my tics are one of them tho but i honestly hate tics but when i hold the neck thing in i then start blinking and my arms feel like they are going to move and stuff and i thought i was the only one who feels pain in my neck tho
Glad your doing a little better get well soon! ❤❤
I'm so happy you feel better! Great video, you are our hero!
Sounds like ballistic stretch, does it make you more susceptible to repetitive strain injuries? Chronic pain suffered here too
Zara me my mum and dad think my tics are currently acting up cause of stress its just the uhm neck tic tho cause today 06/06/24 my cat passed away AND HE WAS MY FAV CAT so i have my other cat coming to me every time im downstairs but from now on im just going to be sad on this day each year i miss the poor cat so we think that may be the reason of my tics stress but i dont feel stressed but we think thats why cause of what happened to the cat
I met a young lady years ago, that had to wear a mouthgard and was not able to drive. We were walking with her and she would stop and turn around and go the other way for a few steps and then jog back. She was at risk for walking out into traffic. She didn't swear, but she did shout "I love you" and people on the bus were not happy with her. :(
That's always been a major fear of mine because my tics go along with stress in my life. I am the stay at home parent, and being unable to drive would ruin my family
It’s not a bad thing to hear someone say they love you. Those people make me sad.
@@greenliter1 A random person shouting it, though? I would think they were high or manic (and I say that as someone who's been through half a dozen manic episodes)
I’ll never understand people who think Tourette’s (or any other chronic/neuro condition) is fun or funny. None of this looks like fun to me. It looks painful and tiring. Thank you for advocating and educating kindly and effectively! ❤
True..
@@swingbat6776 it is painful. And if you do a tic, consistently for so long, it just...hurts!! Even vocal tics. They can make the head hurt depending on what vocal tic(s) you have.
I'm so glad to see this adressed. I don't have Tourettes (my tic disorder hasn't been diagnosed) but i do have really bad tics and they can cause me so much pain! I have the same neck tic and it is so difficult.
Same
omg that tic i had it for so long that i actually got ear pain from it but i finally got rid of itt
Zara Beth, do you realize how articulate you are? Even with Tourette’s you are so articulate that you might consider doing voice-overs for others. The tics can always be edited out, but clear articulate voices are few and fare between. I appreciate what you are doing, I learn from every one of your videos .
Hi I was Just diagnosed with Tourette’s today, I’ve been watching your videos for a while now I was aware of it all so when the neurologist brought up Tourette’s and FND I knew what she meant, I just want to say thanks for being amazing
Thank you for your openness about Tourette’s Syndrome and FND. Zara you are a gift to humanity.
@UCuTsFckHTfVfoh8UlYJ4IxA I am so impressed with your maturity and insightful message on your channel. I am a retired university professor of chemistry (Ph.D.). I taught for nearly 40 years. I have 3 living adult children (between 35 and 40 years). I lost a son 7 years ago to a fentanyl overdose. I have been an educator my entire life and admire persons who are interested in furthering knowledge. Zara, you are doing a wonderful service to those of us who are not knowledgeable about Tourette’s Syndrome, FND, autism, etc.
please know your message and delivery are exceptional. You are having an impact. Please keep doing what you are doing. ❤️
I don't have Tourette's but my neck sometimes bends back or off to the side when it's not supposed to. It's more annoying than painful, and I can usually move my head back to where it's supposed to be in a few seconds. It also seems like some kind of stim, because it happens more often in overstimulating/uncomfortable environments. Sometimes, I get (painful) neck spasms when I yawn. They bend my head forward, and I have to wait for the muscles to relax again before I can do much of anything else. I can't imagine what it's like to have to go through painful neck twitches multiple times a day. ❤
That neck crack sounded really painful 😢
I have something similar however, it has slowly developed into tics these are caused by my anxiety and ADHD. So I tic when I'm over/under stimulated, overtired, bored or have been sitting still for too long, when I'm anxious or when I'm stressed. They started with small motor twitches and neck twitches and have now become worse and I have now developed vocal tics. I relate to this video a lot and I'm so glad she has talked about this side of tics.
@@aquaidelic6424 Just for ur information, anxiety and ADHD can’t cause tics, you can most definitely get twitches but full on tics are caused by an underlying tic disorder. Anxiety, overstimulation, boredom etc. can all worsen tics, so you might only notice them when you’re experiencing those things, but anxiety/ADHD it’s not the root cause :)
a big difference in stimming versus tics is that stims are (usually) voluntary! stimming is used to regulate the nervous system which is why a lot of people stim while uncomfortable or happy (either way, big emotions can = big stims) but tics are not voluntary which sounds more like what you’re describing! you can have tics without having tourette’s i believe
@@deinodinosuchus I did some research and found out that you were right! It seems that tics which don't result from a tic disorder can be caused by anxiety, which may be why I thought it was a stim. There also seem to be a lot of people who have tics but don't have Tourette's either because they don't meet the criteria for a diagnosis or because the tics are resultant of another disorder, such as Tardive Dyskinesia.
I have also realized that caffeine definitely does not help with my tics, which is a similar observance to a study done on adults who have tics 😅
@@earth- I've done my own research and also been told by many doctors and phycologists that my tics are a symptom of my Anxiety and my ADHD stimulant medication. I only experience my tics at these times and on my stimulant medication. I will however, go back and check with my doctor about a tic disorder just incase thank you!
I was diagnosed with Tourette Syndrome last month; thankfully it's mild for me and my tics haven't been painful, although I do find them embarrassing and distressing, particularly in public. I am grateful that you spread awareness about so many aspects of living with Tourette's as well as how it interacts with your comorbid conditions, I think education about comorbidities is super important. Take care, you're amazing 💚
I hope this isn't inappropriate but you have a beautiful soul. Despite all the challenges you face every day, you keep on going, radiating confidence and happiness in the face of adversity. I've only recently started seeing your videos and you are a such a wonderful young lady and amazing ambassador for those who, like yourself, have to deal with the daily issues that TS brings. You've managed to gain a great education and I hope that you are able to continue to shine your light to those of us who have never experienced the pain of Tourettes, I myself have never met anyone with the condition so it really is an education for me. I've seen many videos of people with Tourettes and it's nearly always glorified and without proper explanations on the condition. Your videos are a fantastic educational tool because you go deep and tell everyone how this effects you, and others. I wish you well on your journey of life Zara, keep doing what you do and thank you fpr sharing your life with us all.
🙂🙂🙂
You are such a calming person for me to watch! Thank you. For being vulnerable and honest on the internet and spreading awareness for us less brave to express what we struggle with. Your work is appreciated.
Take care of yourself ❤
I’m sure a lot of people laugh when they hear you swear. I’m sorry that you have to deal with a lot of pain, due to your ticks. I know I’ve laughed when you swear. I’ve never met anyone who has ticks. I’m learning so much from you ❤❤❤❤.
Yeah I do sometimes too with some of the random tics but I often feel bad about it
@@Mynameis_lizzy same. You sometimes just can’t help but laugh. When you hear someone just swearing and saying some crazy stuff. I’ve learned so much from Zara. She’s just amazing ❤️.
Hi Zara. I just wanted to say I think you’re such an inspiration. I don’t suffer from Tourette’s myself but I do have a seizure disorder and your videos help me every day to keep me positive and keep me working towards my goals. Since discovering your channel I have achieved my dream of teaching myself to play guitar and writing and releasing original music. Keep up the great work.
Thank you for all your insights and spreading awareness 😊
I can barely imagine how painful and stressful a life with Tourettes must be.
You and everyone else dealing with this are amazing people and heroes in our world 😊 Take care ✌️
Thanks so much for this video. I have both Tourettes and FND also. I live in a group home and unfortunately, people around me aren't always understanding and sometimes I deal with people purposely triggering my tics or seizures. I am so glad I found someone who completely understands the struggle. Sending you so much love ❤️
That's horrible, Kelly, people triggering you on purpose! I'm so sorry. 😞
I've watched about 20 of your videos over the last week (some dating back 2 years).
At 43 years old, I'm now more EDUCATED, TOLERANT and UNDERSTANDING towards what tourettes really is thanks to your channel.
PS. I had to google what FND was.
Keep raising awareness and sharing your very difficult story with us please.
Scotti P
Proud Ally and Subscriber
I get SUCH a sore neck from constantly having neck tics! Thank you for adressing this Zara, I needed this 💗 xxxx
I really love your channel because you inspire me and I have learned so much about Tourette’s and FND and autism and you just light up my day! As a girl that has grown up with a brother with Tourette’s, Adhd and Autism I kinda know your stuggle even though I don’t have any connection to having tics or anything like that but still your channel means so much to me the day I found your channel I felt so blessed! Thank you so much for spreading awareness for everyone! You are doing Gods work ❤️ Happy Tourette’s awareness month! 🩵💙 (sorry could not find a dark teal/blue ribbon) ❤❤❤❤
I have anxious tics and the most painful one for me is when my head turns really quickly because it makes my neck click but luckily for me it doesn't happen often😅usually mine are just these loud noises I make, leg shaking and quivers
I understand the pain you talk about from ticking, I don't have tourettes but I do have damaged nerves and muscles and that combined with medication side effects have created very painful tics and twitches, the sensation you described right before a tic attack is very accurate.
The neck twitch really does hurt quite a lot! I already have joint pain, so it really doesn't help. I also relate to other topics you talked about and shown in this video, and it was nice to hear about other people's experiences.
I am a mom of 8yo boy who has Tourette syndrom with violent tics, and yes, they hurt a lot. Love your content, Zara, bless your heart.
this video is really informative and everything is very well put! next time someone asks about this i'm just gonna link them to this video bc you explain it way better than i could
This is such a great quick breakdown of tics. I have been diagnosed with FND and they just summed up my tics as being apart of that but I relate 100% to everything you have said even though it is about Tourette's. Basically the only reason I didn't get diagnosed with that is that It started when I was 19 and I'm now 23 so yeah anyway really great video and I appreciate your advocacy.
This, this is what the tourettes community needed. Tourettes f*cking hurts!
thank you so much for this.. its nice to hear another person talking about the injuries and chronic pain associated with tics... its something i was always in denial about and thought my pain wasnt valid bc it was somehow self inflicted. and lots of friends and even doctors dont understand the amount of pain im constantly in.
Gosh your amazing, I have FND and my functional tics hurt like crazy some are just huge joints or just neck twitching from a range or light to ones that hurt. I make some noise but I've tried hard to hold them back but that doesn't work. I watch a range of your videos because of FND and I have it and my right is mainly attacked by them, and my sight is affected. I wish I could talk to someone or a group about this. As I am alone and I just don't know what support I need going forward. Keep help getting the FND message out there, it's helped me more than Drs themselves.
I'm slowly heading towards FT wheelchair use due to the pain from my tics. I've been a part-time w/c user for ~8 years. I'm 37. My back pain started at age 16. It's really difficult, but I'm doing my best to live a "normal" life!
My oldest son has Tourette’s. Thank you for this video. People are very ignorant of the condition. It’s far from funny.😢
As someone who has Tourettes I can say this is 100% accurate. Thank you for shining a light on the fact tics hurt and how suppressing tics causes more painful tics in the long run. Thank you for showing me that I am not alone in the chronic pain and everything else in between.
I love how gently and honestly you educate. You caught me with the funny parts, I stayed to learn more. ❤
I had never quite put the two and two together that just talking about tics can trigger them! Although it can be a difficult topic, it still feels good to be learning more about myself, so thank you very much for sharing this :)
Thank you for sharing your experience. Although I don’t have Tourette’s, I am autistic and can relate to what you said about emotional pain. Like you said, there is so much that people don’t see behind the scenes. Your videos have helped me realize that it is okay to slow down and take care of myself. Take good care ❤
When Zara is talking about the emotional pain that comes Tourette's, I'd like to know if you would often feel shame and poor self image? I know that's an awful thing to ask. I have ADHD and it's only just now at 33 I'm starting to let the shame go. You know, like, "I'm acting strange, and everyone is watching and judging me".
Please know this question is coming from a place of curiosity and compassion.
Love your videos ❤
Just wanted to say that you articulated this so well. You’re an excellent educator. I’ve learned so much from you. Thank you for sharing yourself and your life with us. Your authenticity is refreshing and your positivity is inspiring. Blessings for health and happiness. 🙏
Again my 1000000% respect for your honest and open informing us of your life challenges.
Thank you Zara Beth. I thought I understood a little, and now realise that I know nothing. I just hope you realise how much your videos are educating people like myself. ❤❤❤❤
I have a tic where I grind my teeth so hard it has been known that I break my teeth and either crunch them up like sweets or just swallow them. the pain is intense to say the least and trying to get an emergency dentist appointment can sometimes take 2 weeks. so people who say tourettes dose not hurt can go do one. also I have never recieved benefits or help with my condition off anyone even tho I have asked for years. all my help has come from utube from videos like these. carry on the good work cos some people really need them.
Aw you poor thing, I hope you will feel better and just know that everything thing will be okay, even if it’s not now, your doing so great, ❤
Thank you for talking about this! ❤
Oh my god this I do this all the time...the throat and neck thing especially. I have soreness and tenderness all in my neck and throat because of it and it looks exactly the way you do it...I need to get this checked out
Thanks for making this video! I had no idea that tics could hurt you, although it makes a lot of sense now I think about it. I'm happy I know now, I guess this video made me much more aware of the severity of Tourettes and I'm glad for learning it.
I think it's so useful just for being compassionate towards others to be more aware of how different conditions can affect you.
It sounds like feeling of Tourettes Tics are very similar to Twiching & involantray Movments Caused By FND . You Have Just Made Me Feel More For People with Tourettes. Because of the discomfort & Pain I Deal with Because My FND & How much What You are Describing about the sensation is so much the same for my FND & at Nerve & body level The One Thing I Must Say Is Even If It Looks or Sounds Funny To Othersers it is not . To simply have your Body Do things That You Can Feel But Have No Control Over Is Not Funny . It’s often scary & toucherious . Thank You For You’re Channel You Help Others More Than You Can Know...
FND causes functional tics, so yes they are similar as they both cause tics
I also experience involuntarily jerks and twitches from my FND. Watching this video makes me wonder if I might experience less chronic pain if I stop trying to suppress them? I don't know if they work the same way.
Nice to have you back.I feel im learning alot from your channel. The future us in good hands.
thank you to explain properly and show people the reality of tourettes. ❤ and, as a person who has it, i feel seen and comprehend. ❤ also ngl something is relatable and felt 😂
You mentioned that the majority of your tics are movements and noises rather than complex vocal tics. As someone with functional tics I'm curious, do you find that your complex vocal tics are more present in certain circumstances (i.e. flareup, overwhelm, anxiety/stress etc) than your baseline tics? And is there a difference in how they feel (for example do you experience the same premonitory feeling)? Of course do not feel like you need to answer at all, I'm just really interested in this stuff and I was nerding out about it with my neurologist lmao.
My neurologist told me (which I am paraphrasing so any inaccuracies may be my fault) that most people with Tourette's have a very typical early presentation with mostly face/neck movements and simple noises, and that the more complex movements and vocal tics are more often functional tics. She said it was not unusual for people with an initial presentation of Tourette's to ALSO develop these more complex tics as functional tics later on in life.
Personally I developed tics too late to be diagnosed with Tourette's (I was 22), so I've been diagnosed with Functional Tic Disorder. We believe it's a consequence of high stress levels and of masking my ADHD & autistic traits. I started out with neck movements, which rapidly progressed to more complex movements, noises, then words and sentences, then self injurious tics. I was really nervous about how far it would go but it seems to have stabilised. The silver lining was that I was assessed for ADHD on the NHS much faster than I would have otherwise I suppose 😅 And my ADHD medication seems to decrease my tics somewhat. Another thing for me is that I tic a lot less when I allow myself to stim! My tics getting a lot worse it's like a warning system that tells me I need to regulate
i'm not a neurologist and can't advise on any diagnoses etc, but i can say that doctors seem very unsure of the lines between the tic disorders (i've heard many people with similar presentations be given completely different perspectives and diagnoses) so i'm honeslty not sure!
my experience of TS is mild tics (jaw twitching, neck twitching, coughing, hiccup noises etc) from the age of about 7, and then at 14/15 i had a massive burst in tic severity during high school which led to my diagnosis and my educative content starting. then since school finished for me, tics have calmed down again but still a moderate amount and daily
hope that gives you some helpful insight? 🙂
I haven't Tourettes, but I have Restless-Legs-Syndrome. I feel the urge moving my legs coming short before. If I suppress the movement, it's really unpleasant until painful. So I can a little bit understand of your bodyfeelings, I think. I don't understand how anybody can think, Tourettes is not debilitating, a disability or even "only fun".
Oh, and I'm autistic and if I stimm too much, it can be painful too, sometimes.
My father (henis autistic, too but officially undiagnosed) recently in his 60's developed this neck-tick along with a strange movement of his mouth. He himself didn't noticed, but it's obvious a motoric tic. I find this coincidence of autism and various other diseases very interesting. FND, EDS (I'm sure hypermobile), ADHD, Seizures, Tourettes etc.
I have autism heds ADHD fybromyalgia CFS symptoms seams autism heds causes si.much my son now diagnose tics OCD autism ADHD d
I also have Tourette’s and what you are saying is so true! I have Copralalia too it is vey hard I have been stained at and laughed at and even called names. Thank you for posting Zara!
Im so scared my mom said im going to the doctor because of the tics i have im so scared so i have just been searching up these video's 😭😭😭
Thank you! This was really informative
I'm 50 years old autistic with ts and chronic pain conditions. One of my most violent tics has caused me injuries, joint issues and migraines.
Great to see a new vid, hope your feeling better
i have tics. not tourettes, but I do have tics. they aren't frequent. but thank you for giving me an explanation for when I have tics I feel it coming. my english isn't well (it's my native language) so sorry if I don't make sense. and I feel the urge for my tics. anyway, nice vids!
I was first made aware of non-verbal tics, and their potential harm, thanks to Jess Thom when she was on Russell Howard's show. Iirc, she had padded gloves as she hit herself in the chest regularly, so definitely going to cause herself harm if something wasn't done to limit the effect
It may not be fun to discuss Zara, I know... for what its worth though this was an excellent education for someone who doesn't know someone directly in their (my) life with tourettes. I'm sorry you have to deal with this - and also I'm glad that you ARE you. Lots of love, and I hope you're feeling a bit better now (flarewise
Thanks for sharing. You're so well spoken! I wasn't aware of the pain with Torrette's but it makes complete sense. As does the interaction of it with FND. Chronic pain and constant injuries suck! Sorry for the long reply below. I think I shared because you've connected well. 💖
I have hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is one of the 13 forms of EDS which are genetic connective tissue disorders. Connective tissue is everywhere so so many things can go wacky. My mom is legally blind in her left eye and low vision in her right because of hEDS. I have had so many joint injuries I've lost count, plus at least 9 concussions (because apparently ankles need to work or you fall...)
Yet, I've had similar experiences to yours with Torrette's with people thinking that hypermobility is a good thing.
"Oh, cool you can do splits!" ... Yes, in high school I could stand on one leg, put my other above my head and touch the opposite ear. But I also lost functional mobility in my right arm and hand in what was supposed to be my last year of high school because my long hypermobile neck pinched a nerve. While I regained mobility, I still have chronic pain as well as tinnitus, and hearing loss.
I also partially dislocate my jaw ("sublux") it multiple times a day (2x while watching your video).
I'm an ambulatory wheelchair user because of a common EDS co-morbitiy dysautonomia. My autonomic nervous system doesn't work when I'm standing. Blood pressure drops, brain fog because of lack of oxygen to the brain, dizziness, hearing and vision get worse, digestion and nausea issues, and my heart rate can spike.
I have Tourette’s and I’m crying rn because I’m hurting myself so much and hitting others of course I’m not trying to and im so sad and in pain but my mum in going to call the doctor tomorrow ❤❤❤❤❤❤ love you ❤❤❤❤❤❤❤
I have Tourette’s and one of my most common tics is also a neck jerk. Over the past couple months it started to crack and recently when I have my neck tic it sends tingling and a numbing sensation down my arms. I wish people saw Tourette’s as more than just the tics.
Hey Zara! I love your videos and your personality tics or not your amazing! ❤
I agree as vocal tics are painful when it happens back to back
I love your videos, but listing to someone talk about tics triggers my tics. 🤦♀️💜
me too 🥲😅 that is one of the frustrating things about TS!
My premonitory urge is often a shiver that goes up my neck, through my head and down my arms. It is extremely uncomfortable. Especially when the shiver lingers in my head. Often my bigger and louder tics are triggered by these shivers.
When I twitch, it hurts. It can feel like being electrocuted/shocked. Sometimes the twitches last several jerks. My condolences
Hi Zara! Absolutely amazing video as usual :) ever since I watched your teen fest video few years ago I’ve been dying to go and I’m finally going to this years one’s! You’ve really helped me on my TS journey thank you
Super informative. Wonderful presentation.
My worst motor tic is my neck tic as it has worn down my jaw joints and my neck joints to the point that crack so loud others cringe when I tic. It hurts. Sometimes if I'm not limber I'll pull a neck muscle.
My neck tic is a quick / sharp shoulder to shoulder "checking my blind spots" thing so it involves my whole head and neck.
Wickedly annoying.
I have akathesia. It affects my legs at night. My legs constantly want to move which keeps me awake. But if I try to force my legs to lay still, the harder they will twitch and flail when I relax.
I don't have toureytes, bit I have tics from anxiety. My neck ones were so bad during the pandemic I slipped a disc in my neck and damaged my spinal cord. Thank God, emergency surgery reversed 99% of the spinal cord damage, but it has permanent damage.
My son has those I have had them and my late mum I though torettes was effected by anxiety to I thought all tics were torettes.i have fybromyalgia CFS elements fnd heds autism ADHD
I sometimes move my head forward when cold and put my head back
Sometimes tics make me feel like my neck is gonna break 💔
Thank you Zara
I don't have tourettes but I def suffer through tics. For me, these tics are just physical but some of them do become an inconvenience. One of them would be a random air punch and the one more convenient one would be head twitches/tils. I used to have a vocal, saying "lol" out of nowhere.
Tics doesn't really hurt me. They're just an inconvenience lol
I have OCD, obviously not the same as tourette’s, but I feel like I understand what you were talking about with the tics not feeling satisfied if you put something in the way/try to redirect. This happens to me if I get a compulsive urge to do something and I don’t. Obviously, because OCD is a mental illness and doesn’t cause totally involuntary movements it’s not the same (I’m definitely not trying to make a 1-to-1 comparison). I am able to stop myself if it’s something harmful or whatever, but I just think that similarity is so interesting and I wonder if theres anything behind that
Thank you for sharing this.
thx for sharing your stories with us 😊
thank you for listening to them!!🫶🏻💖
A problem for me is neck pain. It’s not chronic but it happens after bad tic days because I have lots of neck tics
I can only imagine that you can get repetitive motion injuries too :(
Absolutely awful condition it really is and it's sadly very often forgotten about but it is an absolutely awful condition but it's good that the tics can end up entertaining people and making people laugh unintentionally and people seem to think all those with tourettes are all really rude and nasty but that's so very far from the truth some of the nicest people I know have tourettes X so sorry you have to put up with this x
I'm beginning to wonder if I have some sort of tic disorder. Many times day, i get this shiver and i stick my tongue out and i can't help that much. So i don't know
My tics made it so I hit my friends. I’m lucky that it’s just me hitting in a direction and not my tics aiming for my friends. They luckily are all ok with it but I always feel bad.
Yes, don’t forget that…
I have FND (the French equivalent is TNF, which is the diagnosis I have as I live in France, though causes vary)
I have non epileptic seizures, moments my body “gives up” and sometimes I can’t move parts of my body or speak. In addition to this I have tics, also related to my TNF. I wanted to educate some people in France as many don’t know what it is and I’m often being taken to the ER when they can’t do anything, and I feel very lonely. But I’m really scared of the hate, or people thinking I’m faking. In France we’re not given documents with a diagnosis, we are told it by a professional and treated if possible. I also, due to researching what on earth was happening to me, have a lot of tics from others. I have quite a few health issues but they’re all uncommon where I live. I want to help others like me feel less alone but I’m scared of being hated or accused of faking. How is it for you to deal with this kind of thing online? Is there a platform that is preferable for this kind of content? I’m not sure if you can answer these questions but thank you for your videos as they make me feel less alone❤️
i have one annoying ti that is blinking to hard and then idk what i do but like that i hear a weid sound in my ears its annoying and one with my fingers which might be really hard to ever get rid off
Tysm you rlly help me learn about tourretes!!
One thing I think is the most annoying is when people say, “ Your so lucky u just get to swear, I wish I had Tourette’s!” You don’t I have TS and copralalia.
So I don't have Tourette's but I have random neck jurks, and make random noises, but these don't happened every day and once it went away for a week and then boom it came back and startrd hurting so much because of how fast it happens to my neck. And they happen more at night, also my foot has started jurking to
AHHHH I have that exact same neck tic and it has hurt me multiple times. My neck is constantly sore and I have hit my head more than a few times because of it.
I would think, and please correct me if I’m wrong, that neck ticks would also hurt the spine. I also think of it as the pain that comes along with seizures.
yes, back/spine pain unfortunately comes along with my neck pain and more aggressive tics
Thank you for your educational and awareness video(s). A bit of a strange question which you may or may not be able to answer. No pressure to answer if you don’t want to and feel free to delete this comment if it is inappropriate or offensive.
What are the rules/regulations/accommodations made for those with Tourette’s when travelling? For example, if someone with Tourette’s was travelling by plane and shouted the word bomb in an airport or aircraft. Surely, security can’t arrest or question you for a tic? Yet, constantly explaining your medical conditions are tiring in itself.
I love your videos so much!!!! PLEASE PLEASE respond I love your inspirations!!!!!
I have TS and hypermobility. I have found when something is out of place and causing pain my tics don't like the "abnormal" feeling and focus on that spot. So when a part of my body hurts that part will have more tics.
i can relate! focus on one specific area does definitely increase th tics there in my experience
I had a tic when I was younger that would cause motion sickness and make me throw up. That was not a fun one.
I’m sorry for you tics zara
Ngl, my head jerks hurt 😭
Thank you for doing this video Zara. I don't have Tourrettes but a tic disorder as well as other chronic illnesses. (Fibro, ddd & cfs/me + adhd)Tics can be so painful, I tic a fair bit during the day. I didn't realise until my manager told me yesterday that my tics were getting worse all last week until I had a tic attack at work on Friday (the last one at work was 6 months ago) I am still in pain now as it caused a fibro flare (which was already on it's way due to the hours I did last week) I get punchy and scratchy and a tic that throws my head back. Idk if it was partly triggered by my work friends as they love setting my tics off and between one and a customer that does it too I just got more and more ticcy until they kinda just exploded. Does that even make sense? I don't mind if people laugh at them/with me if they're funny but I've now had to get my manager to ask them to be mindful if i'm already very ticcy. I'm so sorry I wrote a rambly essay,
Please come to the UK and come to Dundee.
i'm from the UK..😂 indeed very British
I don’t have tics but my body does something like it do you know why
Hey Zara,
(With all respect)
Thanks for sharing this video, very educational!!
That part when you got a seizure, thanks for showing that. It was really interesting and educational, to see what that looks like in that situation. That it was triggered by a tic, thanks for explaining all that!
Also 10:49 where you unconscious? Hope you where ok after that🥰🥰
Happy pride month😉😊❤🧡💛💚💙💜
I’ve been having this neck jerk recently, of course, I don’t have a diagnose under anything relating to tics, but, I feel like I should contact a medical professional about it, because I feel like if I don’t do anything about it and get any other tics or weird jerks, maybe relating to my back or knees, I’m really going to hurt myself because of my back pain, neck pain and of course, knee pain. What do you think, should I tell someone about this?
Hi Zara, I have a question about the 'head drop seizure', if I can ask. I also have seizures and I'm wondering are you conscious during those ones? I have something that looks similar and I am conscious, but unable to respond or do anything and I never know what to call them.
hi! i wanted to ask tourettes community about something my neuro mentioned a couple years ago. can tic urge be something that people see intentional? i dont know how to explain but when you have this feeling of tic coming you let it but it can be seen as just a movement you intentionally make because it's not surprising and you know the tic is happening. i think I've been having tics since childhood but my doc says if i can stop them (they come later anyway tho) then it's not a tic at all. can you explain how much control you can have for tics to be valid? because i only have them like 10 times a day if it's a good day but they are still a problem and i wanna know if they're really something i should advocate for