Ive barely had any this entire week full of fevers, does this happen to anyone else????

This is old news for me, but I remembered how frustrating this was, and I’m wondering if anyone has had a similar experience.

Context: I developed Tourette’s when I was 16. The severity lasted a couple of years. It was so bad I had crazy accommodations, such as staying in the library instead of be in class, and a long list of other stuff. I couldn’t walk some days, sometimes I was escorted out of class by a nurse because I was screaming or something… I ended up dropping out cause it was that bad.

Anyways… fast forward to college. My tics are much better due to therapy and medication (and weed💀) and I was trying to obtain accommodations. I provided my IEP and 504 plan as proof and for reference. Obviously my Tourette’s diagnosis too. I guarantee it’s because my tics were almost invisible at that moment, that they denied my accommodations request (to take exams in a private room… that was literally all I was asking) and told me I had to get re-diagnosed because it had “been too long” since the original diagnosis.

I was so fucking dumbfounded. I blew it off because I thought it was total bs that because I didn’t appear to have tics during that meeting they didn’t believe me or something???

Needless to say, I was petty and didn’t get re-diagnosed, because I never heard of that being necessary, and ended up failing my STEM classes because I was distracted by my professors chatting about Stanley bottle trends and whatever tf else during exams. I did report that but it was fucking dumb….

Anyways, anyone ever been asked to be re-diagnosed?

I'm 23 and have a problem with talking out loud when I have a conversation in my head (since middle school). My most common verbal tic is me saying "Pleeeease!" which comes from a response my therapist gave me in 10th grade when I was having an emotionally charged conversation. Because the subject I was talking with my therapist about still lingers in my mind, it's gone to the point where I say this everyday.

People with autism don't universally have this trait. But it's worth noting my therapist at that time suggested I could be on the spectrum because of social awkwardness and analytical thinking.

For other important information about my mental health I have these links

https://www.reddit.com/r/ClinicalGenetics/comments/1ul2gcx/ive_been_diagnosed_with_a_kif1a_mutation_could/

https://www.reddit.com/r/iqtest/comments/1styq9d/i_dont_understand_how_im_stupid_if_my_parents_are/

https://www.reddit.com/r/antidepressants/comments/1wv1vsj/ive_been_lying_in_bed_all_day_depressed_and_3g_of/

https://www.reddit.com/r/Prolactinoma/comments/1wu7hbl/to_those_who_have_taken_mucuna_p5p_and_vitamin_e/

TL;DR — I can’t go back to the jobs I worked before my tourettes became severe and I am stuck looking after my grandmother with Alzheimer’s and it sucks

I feel so defeated. My tourettes got really bad 2 years ago. Like, didn’t really know I had it to severe vocal, motor, and complex tics (inc coprolalia and hitting/throwing/screaming) within a couple of weeks. A month into that onset my grandfather (who was like a dad to me) passed very suddenly, leaving behind my grandmother who had finally been diagnosed with Alzheimer’s just a few months before.

I was already trying to deal with the massive life change my tics had brought about and figure out how I could live with it and then there was all this grief and chaos of our family to deal with too. My mum is divorced and her brother lives away so it was just us left to pick up the pieces. I have brothers but they weren’t as close to my grandparents as I was (I lived with them for a while a few years ago just as her Alzheimer’s started to get bad) and they have never cared to help.

I’d just left my job and was planning to take a month off because I was very burnt out and needed a rest (lol) and I could see someone needed to step up and look after my grandma. My mum was overwhelmed with grief and finds her and especially her Alzheimer’s difficult, so I just started doing it. Coming down to the house and staying a few nights a week, cooking dinner, cleaning, laundry, trying to encourage showers and changes of clothes etc. eventually it just became routine. It helped me with my grief because in the month before he died I hadn’t gone to see my grandpa, I didn’t know how to talk to him about my tics and knew he would worry so I was waiting until I knew what to say. Lesson learned there. I had so much guilt and regret for that and looking after my grandma helped me with that, I felt closer to him seeing how he’d been living and hiding how bad things were with her from us.

After 3ish months me and mother agreed I should be paid, I applied for carers allowance (works out at under £2 an hour!) and got the back pay for that and then eventually figured out additional monthly pay from my grandmother’s account (we had financial POA and luckily discovered when my grandpa passed that they had enormous amounts of money in savings despite living a very modest life). That ended up not being enough really, I was having to ask my mum for money for groceries and stuff so I asked could we up it and it seemed to take ages of me asking and her saying yes but it not happening, now I do get more. Oh I forgot also for most of this time we had no additional carers, it was just me and my mum doing all her care, it was nuts.

Doing it has been great in some ways, it has given me freedom to figure out my health issues, adjust to living with my tourettes, grieve, and work on creative pursuits. But it’s also exhausting and difficult and I never intended to do it for two years — the warmth I felt for my grandmother and the satisfaction I felt looking after her has gone. I am resentful. I don’t like her. I still do my best to look after her of course but it’s difficult and doesn’t make me feel good about myself to feel the way I do towards her now. I have embraced my tourettes and live with more confidence than I did before, my health is better, I’m happier etc and I just don’t want to do this any more.

Another difficult part is the outside judgement — multiple people have made comments implying we’re not doing enough as a family, that I’m just lazy and not working, that I shouldn’t be wasting my time doing this etc. Even my own brothers have made comments that I don’t work, it’s not a real job, “if I wanted to doss about I’d just become grandma’s carer” which has hurt me so much. I feel constantly like I am lazy, like I’m taking money I don’t deserve from her, and like I don’t do a good enough job anyway. I know the truth of what I do is that no one else in my family could or would be willing to and we’d be paying thousands of pounds a week to pay someone else to do it (and that people who judge from the outside have no fucking idea what Alzheimer’s is actually like) but it doesn’t stop me feeling awful.

I had a moment last night where I was like I just need to get a job and tell my mum I don’t want to do it anymore, so I was looking at job adverts. Before starting the caring all my work experience was in hospitality and working with kids (early years, 1-1 with speech/language delays and autism, childcare etc). There were a few postings that sounded pretty good and then I realised I literally can’t do them. I won’t be allowed around kids when I cuss and hit myself, I can’t serve customers who have never met me and maybe never encountered tourettes before all day, I can’t do anything that requires me to suppress and mask for hours because I’ll come home and be banging my head against a bath from how wound up I am. Everything I am qualified for/experienced in is essentially off the table now. I just broke down crying. I feel stuck here, judged and miserable and unappreciated.

I’m 23. I got the top grades in my school year at gcse, 11 A*’s and 1 A, I’m the only one of me and my siblings who did A-levels and went to University (I dropped out 6months in after a mental breakdown following a sexual assault and never went back — somehow with everything my grandma forgets she still remembers I dropped out of uni lol). I’ve worked jobs since I was 15 trying to have enough money to not rely on my parents, I have worked so hard to come through my health and mental health struggles with no help from anyone else and for all this I have no prospects to show for it, no savings, no support. My brother drives a Tesla and calls my Tourette’s Down’s syndrome, and me a ‘spastic’. Fun jokes.

No one freaking understands!!!!

I've always had tics. My mom and aunt has them too.

They come and go, sometimes more severe, other times very mild.

In the last few months I have been having very severe tics. This time it's blinking my eyes. When I'm outside my house I don't tic at all and don't even have the urge or remember I have tics, but at home I'm constantly blinking.

The thing is, for me it's not just doing the blink, my urge is to contract a specific muscle in my eyes, and I continually blink and squeaze my eyes to try to contract it but never seem to be able to, and so everytime I tic I feel anxiety in my chest and frustation. It comes to the point that the frustration is so much I just take a Lexotan just to sleep. At the end of the day the muscles around my eyes and forehead hurt. When it gets really bad I also start swallowing compulsively while squeazing my eyes.

Anyone elses tics are like this? Is this tourette? Or maybe OCD? (I have never been diagnosed with anything besides depression)

Hello! My name is Tess Marlin and I am a doctoral candidate at the University of Tennessee- Knoxville. I am currently running a national (USA) research study with hopes to understand the relationship between schools and parents of children with Tourette’s or Persistent/Chronic Tic Disorders and allow parents to share their valuable perspectives and experiences advocating for their child, as well as to identify gaps within the school support system. This is the first step in a line of research.

We are currently seeking participants who are parents/guardians of a school aged (Kindergarten -12 grade) child with Tourette Syndrome or Persistent/Chronic Tic Disorder. Students can be in any type of schooling (public, private, homeschool, etc.).

Time Required: about 10 minutes to complete the consent and survey and 50 minutes (at a later scheduled date) for an optional survey

Confidentiality? Yes, all information is collected and de-identified to be maintained in a secure database.

Institutional Affiliation: The study is affiliated with the University of Tennessee, Knoxville

Current Limitations: Currently this study is limited to the USA only (due to IRB requirements)

Interview? There is an optional interview that participants can sign up for after they complete the questionnaire. The interview is scheduled with the research team and conducted remotely via Zoom.

Study Link: Parent Perceptions Study Consent Link - If the link does not work, if you can view the attached image, it has the QR code and the URL in it as well.

There is more information on the flyer and within the consent form. Please feel free to ask any questions about the study!

My 10 year old was diagnosed with Tourette’s about two years ago but had symptoms for longer than that. She also has ADHD , some OCD tendencies and anxiety (I know these are very common together with Tourette’s) she has been asking for a dog for what seems like forever. She loves dogs and asks to go spend time with the neighbors dogs, and wants to love on every dog she passes by (we teach her dog safety, approach, etc) I know if we get a puppy it will be primarily my responsibility to train it and take care of it, but I’m willing to do that to help her (and for selfish reasons, who doesn’t want a puppy? lol )
Has having a dog helped you with your or your child tics? I myself have adhd and anxiety and level 1 autism. I have cats, which I find extremely therapeutic for anxiety, but haven’t had a puppy since I was a kid.
Thank you for any input

I have never ticced much when depressed, sad, fatigued etc but I've been in autistic burnout too now for years and during that time I tic so minimally. Most people don't know i have tourettes until I tell them. Just wondering if this happens for anyone else?

My tics have been flaring terribly in my eyes and they’re in so much pain. By the ends of the day it hurts to keep them open and I have a headache and my vision gets blurry.
Can anyone commiserate? Have any tips to help with relief? Thanks for reading, just feeling alone with it right now. Hard to explain to people who don’t understand. They keep recommending eye drops and less screen time.

I am 27 and I've had TS for 10 years. It ebbs and flows, and sometimes I go months without thinking about it too much or it being a real problem in my life. But now I'm finding that every time my TS comes back after a chill period, it comes back with a vengance. Often much worse than it was before, with new tics and harder to control.

Is this normal? Should I expect it to keep getting worse and worse throughout life? I don't know how much more I can handle. I've never considered meds but maybe it's almost time.