Ticcers Unite

It took me 7 years to write this... a very cathartic experience. I hope it helps others in the #PANDAS/#PANS, #Lyme & #Tourette community feel less alone. Lyme is what fuelled my PANS - which then triggered #OCD and severe tics. They all tie together. amazon.co.uk/Unravelling-Ri…

It took me 7 years to write this... a very cathartic experience. I hope it helps others in the #PANDAS/#PANS, #Lyme & #Tourette community feel less alone. Lyme is what fuelled my PANS - which then triggered #OCD and severe tics. They all tie together. amazon.co.uk/Unravelling-Ri…

Teachers not understanding Tourette's: youtube.com/watch?v=7N0DXf… #tourettes #tourettesyndrome #tourettesawarenessmonth #SEN #SLT #ECT #education #school

10 years on from my autism diagnosis: youtube.com/watch?v=ZFbDDD…

My journey with chronic illness, infection testing, low-dose naltrexone, and the Buhner protocol: youtu.be/-x_UFzzxUo4?si…

Follow & Repost to stand a chance to #win a copy of Blind Not Broken by Lucy Edwards. We have a book every day to giveaway. Every entry supports disabled awareness. (UK only) Our Wednesday competition closes tonight at midnight @lucyedwards

Me: Has a condition where too much physical activity causes post-exertional malaise leading to headaches, increase dysautonomia symptoms, weakness, and mobility issues. Also me: Has a condition that causes involuntary movements that exhaust me and then leads to PEM. #lyme #pans

My tics keep asking people if they want a free prostate exam which is a little awkward #Tourettes #tics #tourettesyndrome

@H2OhTwist Yes 💙 I hope it can help them. Here is the link: amazon.com/dp/B0D2V6GK8K

@TiccerU I think one of my Houseless friends may have Tourettes. Can I buy this in the US?

Tourette Syndrome - The Ticcer's Guide is a handbook to support those living with Tourette Syndrome and their families. The book aims to empower Tourettic people, allow Ticcers' to accept themselves, and find management strategies that help. amazon.co.uk/Tourette-Syndr… #tourettes

@TouretteTourist I'm so sorry it's so lonely and such an uphill battle when you have a less well known condition

Please share my friends fundraiser to get funds for PANS and tick-borne disease treatment gofundme.com/f/plz-help-me-…

"This is a curse where you can neither die nor live," said by a 15-year-old girl. Imagine if she were your child. but you can all breathe a sigh of relief because it’s mine, not yours. If you keep ignoring them, this curse will be upon you all. Save our children! #LongCovidKids

People need to know how the proposed changes to disability benefits are dangerous. @zarahsultana @vickyfoxcroft @DisabilityGovUK @DisabilityAPPG @EnableMagazine @MagsLewisGreens @TheChronicColab (tagging anyone who may be able to advocate for change) ticcersunite.com/post/why-the-u…

I imagine if the same question were asked about a child with cancer, the public reaction would be overwhelming support for the family and the child. Where is our public support instead of being gaslit? #LongCovidKids

This slide from a presentation by Prof Lynne Turner-Stokes is terrifying. They use ME/CFS as an example chronic illness in the beginning on a talk about “secondary gains” and psychological factors they falsely believe maintain the illness state. Absolutely awful 😞

@NeurologistMom Thank you for this - I was considering getting a vagus nerve stimulator for my POTS, weakness, post-exertional malaise and gastrointestinal issues but I think I'll try something else now. I'm so sorry it made your daughter worse.

WARNING AND OUR EXPERIENCE WITH VAGUS STIMULATION DEVICE (tVNS): I have been seeing some posts in the #longcovid and #mecfs community discussing and willing to try one of these devices. We purchased one (just the device was €4000, with all equipment it was €5000. I know there are cheaper options. This was our preference after all our research). I was extremely cautious with the protocol, starting with just 1/10th of the recommended currency, but even then, the results were terrible. It exacerbated my daughter's autonomic symptoms. She went from moderate to severe with this device. I called the company (purchased them in Germany) to let them know about the results. The people who were too nice before selling the device, giving too much hope showing the “literature” how this device helps with the autonomic symptoms of patients and asking me to spread the information that they gave me to have more patients to “help” - I told them I wouldn’t do it until I see the results - were the same people who didn’t care about our experience and cut all ties with us after I told them about our experience. I have seen they’re working on their little “project” on long COVID patients and some health care providers who are desperately seeking a cure for their patients. I just want you to know about my daughter’s experience and the ones who share similar experiences with us (I got a couple of messages from patients who had the same experience with the device). I know the feeling of “what am I gonna lose more? Let’s try it!” Actually, you can lose more if you become severe from moderate. Here is my opinion as a neurologist: all long COVID patients have dysautonomia at some level, which is the dysfunction of the vagus nerve. The issue is not that the vagus nerve works less than it should; rather, it gives inappropriate responses to situations, sometimes less and sometimes more. This device stimulates the vagus nerve as if it's working less, forcing it to work more. The real problem is the dysfunction of the vagus nerve, not its nonfunction. I feel obliged to write my experience and a few others as an advocate for the patients who are suffering from this awfully disabling disease and who don’t need to be more disabled than they already are. There are exceptions (mostly mild patients) who might benefit from the device, but it’s your right to know the other side of it. It’s all up to you to take the risk or not. P.S.: Please do not post any literature showing how beneficial this device is for patients. I am aware of all literature as an unemployed neurologist due to my caregiver role of my daughter, whose only work is following the literature about my daughter’s condition.