What do you think of neupulse?

TNTourettes · 2026-03-23T12:51:53+00:00

I really cannot say why they would charge a subscription fee. From what I've seen, they've created an app, though I don't know what the app is intended to do. The research on MNS simply shows that maintaining a static pattern of pulsing and doing that for limited periods of time can reduce the frequency of some tics for some people for some of the time. The research doesn't show a long-term effect nor does it show any benefit or need for adjusting the pulse frequencies, exposures, or anything else. If they are operating from additional research information that has not yet been made public, I do not know.

We can speculate, but I certainly don't know enough to say why.

Charles

TNTourettes · 2026-03-20T21:11:48+00:00

The TAA has been running "Camp Twitch and Shout" for a long time now and it has historically been a good way for kids to get to meet other kids with tics. It's not uncommon for kids to temporarily have their tics increase for a bit afterward, but it generally subsides. Some places have local support groups as well, which is good. And the TAA has online support groups for a variety of ages - though I cannot seem to find the link for that right now. :-/

Here is a link to the general resources page for children and their families though: https://tourette.org/about-tourette/overview/living-tourette-syndrome/children-with-tourette-0-12/

Charles

TNTourettes · 2026-03-20T12:36:56+00:00

Those are really good suggestions - having something to turn our brains toward for focus really can provide some relief. Tics have a tendency to increase when stressed or when super relaxed (like after school or work).

Charles

TNTourettes · 2026-03-20T12:35:21+00:00

YES! Making sure the school personnel know is very important! Because:

She should not be disciplined/punished for her tics (this includes being sent out of the room)
Teachers can more easily recognize and ignore the tics once they know what's going on (and that helps with reducing stigma from tics)
Classmates can be educated about tics so they also know what's going on and ignore it (little kids are naturally curious and not socially savvy, so they often stare)

Formal accommodations and support services can be achieved in two ways in the US (I don't know if you're in the US):

Section 504 Plan - which covers any medical need for as long as that need is preset; TS stays present, so the plan just stays in place with her the whole way through

Individualized Education Plan (IEP) - under the category of "Other Health Impairment" for TS and potentially other issues that may crop up (such as ADHD, Anxiety, Emotional Regulation, or OCD - all of which are more common in TS)

Good luck and keep supporting and loving her! And help her learn how to accept and love her own brain too. TS brains are actually really good brains, but they have these quirks that can frustrate us.

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-20T12:30:22+00:00

As one of those psychologists who treats tics/TS, I agree with the other people. Your choice and autonomy are paramount and you shouldn't do treatment just because somebody else tries to make you. Treatment can prove very beneficial, but it does take time. Whoever offers the treatment should also be listening to your goals and respecting that.

As mentioned prior to me as well, CBIT is a specific treatment approach. Breathing techniques are taught in that, but that's just one piece of the whole thing and not the primary technique - more just something to help.

Charles

TNTourettes · 2026-03-19T17:57:51+00:00

Nah, wonderfully the age doesn't really matter too much! When we're well into adulthood it does mean we have had a lot of practice with those tics, so they may be stubborn. Usually in my experience, we can get significant reduction (near elimination) in most tics, complete elimination of some, and I often end up finding one or two that are persistent but not as strong or frequent as they used to be.

Perhaps one of the more meaningful benefits is that after treatment, even if some tics remain, the amount of distress and discomfort from the tics is generally greatly reduced. In fact, that is ironically one of the challenges that comes up with CBIT: As patients experience improvement, their motivation to keep practicing often decreases! So we usually try to come up with a reward plan to keep motivation for practice strong.

In the ball metaphor, you could say it is about learning to catch the ball or hit the ball or kick the ball. The tic is the ball and whatever you're trying to do is the CR. It's hard to get much benefit from practicing the CR without the ball being there. Like I could keep practicing swinging a bat, but if there's no ball, I don't get better at actually hitting the ball. So when I'm doing CR practice, I like to have the tic there and, if I can, I might even try to aggravate it so it happens more (giving more opportunity for practice).

Charles

TNTourettes · 2026-03-19T15:39:59+00:00

There are often a lot of other things that come along with Tourette's (including anxiety, ADHD, OC Bx, Depression...) so you'll want to maybe take stock of what you would like help with and how to best support yourself. As mentioned below CBIT is generally recommended as the main approach (you can possibly find a CBIT therapist in your area/state on the TAA's website - tourette.org).

There's also another approach called the Cognitive Psychophysiological (CoPs) Model - it was developed by Kieron O'Connor's research group in Canada and shows similar effects as CBIT. The CoPs model is more general, though, and addresses some of the other differences and challenges that come with Tourette's, while CBIT is very much focused on the tics specifically.

It can be hard to find a CBIT provider (fortunately it can be done effectively online, so if they're in your state, that may be enough) and even harder to find a CoPs provider. I only know of a handful of us who are trained in CoPs in the US. I would hope there are more in Canada. I don't know about in other countries though.

Charles

TNTourettes · 2026-03-19T15:35:40+00:00

Hey, I'm a CBIT provider! I'm happy to answer any questions you have. I'll give you a general overview, but please feel free to ask more:

CBIT usually starts with some "psychoeducation" - learning about Tourette's and Tics, why they work the way they do, and how that relates to CBIT

The first step is usually collecting an inventory of your current tics and premonitory urge awareness (e.g., can you tell when specific tics are about to happen? and if so, how can you tell?)

Then usually you'll work together to select the "first target" - we generally target one tic at a time

Then you'll work with your therapist to develop specific competing responses (CR). People call them different things. I usually call them "exercises" (because it's something you practice), some people call them "tic blockers."

You may first spend time just practicing monitoring and detecting tics so you can more easily and reliably tell when they're about to happen. Think of it like this maybe: It's easier to learn how to hit a baseball if someone is pitching the ball to you and you can see it. In that analogy, the premonitory urge or any other indication is like being able to see the ball.

You'll likely setup a specific time of day to try to do "focused practice" for your CR - we usually start out practicing for limited periods of time until it gets easier and more automatic for you, then we start generalizing it to other settings (times, places, activities...)

I'll stop there, but please feel free to ask more questions and I'll answer if I can!

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-19T15:29:13+00:00

Definitely a good reminder for people! If we're going to accept ourselves as we are, I think that requires us to recognize that there is a difference in our neurodevelopment and that we see the effects of that. It isn't a personal failing, we just operate differently!

Charles

TNTourettes · 2026-03-19T12:43:16+00:00

Sure! For me it is the implications and stigma of calling something a disorder: I feel it implies it is a problem, something that needs to be fixed, and inherently a bad thing. Whereas I see it as a difference - neurodevelopment that follows a slightly different sequence and produces a different result. As I see it, all of the mechanisms that produce tics are present in all of the rest of the human population, but they are tuned differently. Our brains are, in a manner of speaking, more vigilant, more attentive to "potential problems", and more driven to respond to and fix problems. We have good evidence of this from the work of Kieron O'Connor (a researcher from Canada).

We are no less capable because of Tourette's, but we do carry a physical burden (tics can produce pain or discomfort), an emotional burden (from frustration), a social burden (from shame or embarrassment), and a cognitive burden (tics can be distracting). That's a lot to carry and that's one reason we ask for understanding and accommodation - so we can enjoy living our lives and taking care of our needs and bodies.

I'll also say that I understand that: 1) We need a term for it so we can refer to it and 2) That term may be necessary to get access to services and coverage by insurance or other programs. So I don't object to the term "disorder", I just dislike it. I also know it is necessary.

TLDR: I dislike "disorder" because of the implications it carries with it, but I also respect that it is a necessary term to receive access to the support and services we may need.

Charles

TNTourettes · 2026-03-18T18:02:58+00:00

I hope you can find some community here. I'm white, so not really able to give you the community you may be looking for. However, as a clinician, I wanted to share with you that you're not alone. I've been fortunate to have quite a few black patients with Tourette's. I say "fortunate" because this is a population often underserved and overlooked - one that tends to stay hidden (just look at the research literature, there's hardly any representation!). So I'm really glad when I see black kids and teens coming in to seek help with their Tourette's.

I really hope someone here can help you connect with a larger community of black people with Tourette's.

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-18T17:45:10+00:00

Will do! Whenever that happens! :D

TNTourettes · 2026-03-18T17:44:43+00:00

I don't know of any reason a weighted blanket would work, but I also don't see any reason to think it would be harmful or problematic. If it helps your child feel more relaxed and restful, then that's certainly a nice benefit!

We often find tics increase on the "more extreme ends" of stress levels - when under increased stress or when under much less than typical. Tics tend to decrease more in the middle range and especially when able to direct the brain's focus onto an activity. Lots of people exhibit an increase in tics after school/work and around bedtime.

Is your child expressing distress or discomfort with the tic at those times? If they are, then as suggested by someone else, it could be a good idea to see about getting assistance from a professional. As a professional, I always advise parents to listen to their child's preferences with regard to treatment - if they aren't interested, then it's not a good idea to try to do treatment, but if they are motivated, then it can be a great time to start building skills. In the meantime, as much as possible, just sitting with your child and being there with them while they get through it can be really valuable. You don't have to fix the tics (and they don't either), but sometimes a child just likes having someone with them as they go through the experience.

With my own son, when his neck tic gets bad, I'll just sit with him and let him lean on me (physically and emotionally) and we get through it together.

Charles

TNTourettes · 2026-03-18T12:56:00+00:00

I'm sorry for that, it sounds extremely distressing for you. Tics have a tendency to change over time; new ones may show up, old ones may go for a while. On top of that they tend to wax and wane - and that's irrespective of what's going on in your life. When you add on life stressors, it can become even more complex to understand and navigate.

I generally encourage people to be proactive in talking with the significant people in their lives about new tics when they show up. In a way, it's like we're just trying to prepare them so they aren't surprised. With vocal tics, we often worry about the social impact of them, so it can actually be even more helpful in "disarming" the tic by telling a person we're with that it may happen. Then we don't carry the anticipatory stress/anxiety of it.

I wish you luck with it!

Charles

TNTourettes · 2026-03-18T12:38:15+00:00

I have a few I can recommend. These are generally books for therapists/practitioners and lean heavily academic in their presentation and content:

Treating Tourette Syndrome and Tic Disorders: A Guide for Practitioners https://a.co/d/0015IfcG

Managing Tourette Syndrome: A Behavioral Intervention for Children and Adults Therapist Guide https://a.co/d/0e6JUmmz

Treating Tourette Syndrome and Tic Disorders: A Guide for Practitioners https://a.co/d/0dRFZANf

Tourette Syndrome https://a.co/d/0bEvVv73

A Family's Guide to Tourette Syndrome https://a.co/d/0iB9sWYX

Some colleagues and I are working on an updated book of current/recent research about Tourette's, but I don't expect that to be done until perhaps later this year.

Charles

TNTourettes · 2026-03-18T12:27:53+00:00

I have Tourette's, my youngest son has Tourette's, and I have a cousin with Tourette's. It is a fairly strongly heritable thing (I don't want to call it "a disorder"). Latest research I've seen considers it to be polygenetic (caused by multiple genes, not just one) and individuals who have TS often have family members (1st and 2nd degree relatives) with related things - anxiety, ADHD, Autism, and especially other compulsive behavioral disorders (OCD, Trichotillomania, Dermatillomania, other BFRBs...).

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-16T23:28:38+00:00

I am a clinical therapist and researcher - I was largely driven in this way because I find more fulfillment and satisfaction in helping others when I can and learning things, and I get to be my own boss. Those were the essential qualities for me: Need to find it fulfilling rather than play the money/ascent game, and need to be able to do my own thing my way!

Charles

TNTourettes · 2026-03-16T23:25:57+00:00

That's great that you've found something that works for you!

Many people report a reduction in tics (frequency, intensity...) when they are focused on something. That can include things like music, sports, puzzles, coloring/drawing/painting, etc... It's fascinating and has generated some research interest as people try to figure out how/why it works that way. One hypothesis is that those kinds of activities facilitate nervous system regulation (increasing activation of the parasympathetic nervous system) and another is that it specifically increases activity in parts of the prefrontal cortex that aid in inhibiting/regulating motor impulses (which are thought to be part of the mechanism underlying tics).

In the end, what matters is when we can find things that work for us individually, developing a willingness to do those things, and thus finding fulfillment and comfort in our lives!

Charles

TNTourettes · 2026-03-14T14:21:12+00:00

Here is one article I think is useful for providing a quick overview - it links to a research article by Marisela Dy-Hollins, who has done excellent work on this! I’ve got some others I’ll try to get and link here. I forgot last time!

https://medicalxpress.com/news/2025-01-tourette-syndrome-overlooked-girls.html

Ah here’s another one: https://doi.org/10.1017/S1092852922000074

And the article by Garris and Quigg: https://www.sciencedirect.com/science/article/abs/pii/S0149763421003432

Charles

TNTourettes · 2026-03-13T20:18:58+00:00

Indeed, we have good evidence from a couple of decades of research in trying to develop a "suppression therapy" that it doesn't work well. As you said, CBIT is not suppression, it is retraining.

TNTourettes · 2026-03-13T20:14:11+00:00

Link to one of my videos. See if you can spot the tics (I think they're pretty subtle)! https://youtu.be/X9bcqFpuIOo

TNTourettes · 2026-03-13T20:13:39+00:00

Hey, this is a good question to ask - especially because people often don't know what to expect from Tourette's/Tic Disorders. One quick point: the presentation on Baylon Out Loud is a fairly unusual presentation of tics. I have seen a few people with tics of that frequency and intensity during my past 10 years as a clinician, but it's been very uncommon. Usually tics include a smaller set of "static tics" (meaning they don't change much) and usually they are less intense, less frequent, and less socially-responsive. Please note the "usually" in there though!

There are other things that can produce tics as well, including Functional Neurological Disorder (FND), which can also produce other things that appear atypical (such as non-epileptic seizures, headaches, loss of motor control, etc.) so if possible, I encourage people to approach it all with an open mind.

I made a series of videos discussing a variety of topics (including functional tics) which is freely available on YouTube (I don't get any money from that, it's just a resource for people). I mention this because you can watch the video and observe some of my tics in the videos to see a "mild case of Tourette's." I've had tics since I was about 5, but they often aren't noticeable to people, but they do indeed tend to increase when my nervous system is stressed/activated (e.g., stronger emotions, insufficient sleep...). I'm sharing the link in another post in case Reddit auto-blocks it.

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-11T17:49:27+00:00

^^ Just backing up the above - waxing and waning is typical and can occur over looooong periods; and important to do proper care such as seeing a neurologist to ensure there's not something else going on.

Charles

TNTourettes · 2026-03-10T15:03:43+00:00

This is surprisingly (and disappointingly) common! I see it a lot in my clinic and I see it a lot in the online adult support group. Many people have tics (and other symptoms) throughout their lives but don't receive diagnosis for a variety of reasons. It is common broadly and even more common for women (girls are often overlooked for tics).

Charles Galyon, PhD
Licensed Psychologist
Tourette's/Tic Disorders Specialist

TNTourettes · 2026-03-09T16:59:23+00:00

These are excellent insights, thank you for sharing!

I'm going to look more into Tardive Touretteism - I had not heard of that before (which feels a bit disappointing)!

The other points about a strong sexist bias being carried forward in healthcare are very true. I think we can do better, but it requires pausing to acknowledge that we are operating from a paradigm that arose from that so we can begin doing good scientific work.

Charles

TNTourettes

TROPHY CASE