Tourette's - Tics - And EDS

I was wondering if anyone else here had TS. I've had tics since I was young, following the typical facial muscle to neck and getting worse slowly. But they were always on and off.

It peaked in my Highschool years, then went away almost entirely for a while. Now It's back terribly. It seemed to have followed my bodily stress when I became seriously dehydrated last winter.

I've read about EDS being related to a lot of things, physical and mental. And the conditions are somewhat close genetically. (I have CEDS, TS, and Tritanopia, all of which are 7th Chromosome conditions) Odd thing is that I have history of Tics, but not EDS.

Report post

12 replies. Join the discussion

Hi Twyla,

I was able to find a rather old study that talked about those with EDS having congenital (you are born with it) or acquired (it begins after birth) central nervous system disorders and mentions Tourrette's Syndrome: tourrettes

I do not think the reason for this has been figured out yet, but doctors in the EDS world have definitely noticed a much higher incidence of seizures, tics, and other neurological symptoms and conditions than one would expect to see in the general population. It is not known if EDS would cause this or if it just frequently occurs co-morbidly or large enough studies have not occurred to measure the true prevalence. But anecdotally, we seem to have the chance for many more nuerological conditions than our next door neighbors.

I hope you are well.

Gentle Hugs....

Report post

I have a diagnosis for TS. I had really mild tics when I was young, but it came out full force after a short trial of Risperdal ("for anxiety") when I was 16. The vocal tics didn't start until my early 20s. After that, it was an otherwise indistinguishable presentation. You'd think tardive dyskinesia from the meds thing, but that was 15 years ago, and TD doesn't go vocal or have premonitory urges, as far as I know.

I have no idea what my deal is, to be honest. I also stuttered for 3 or 4 years after the Risperdal, never having done so before and almost never since. So I'm assuming it's a big tangle of WTF brain stuff.

Report post

There is a conversation currently going on for the last few days in a facebook EDS page where many of us have unexplained twitches, tics, pseudoseizures, muscles spasms, etc. It's awful. I found that benadryl is causing some of my symptoms. So I'm switching to zyrtec and hoping that will have less of an effect. It seems every medication I've tried that should help calm me down, makes my muscles more tense somehow except for flexiril.

Report post

You seem to have had a very similar progression of tics. Do you still have them? Did they get worse or better?

Report post

I just realized you said your neurological symptoms started after an antianxiety drug. Mine did too. I only took it for 4 days. but then later I took a tiny bit of Xanax pnr .. the first few times I didn't notice getting worse then I took a whole one one night and just realized that is the day when my worst symptoms began.
I really think the drugs (and stress from bullies and slanderers) caused this even though I only took them a few times. Gasping was my first symptom. It is just about gone but if I get stressed or even take benadryl, it comes back.

Report post

I know I had OCD at least 10 years before the Risperdal (an antipsychotic, probably shouldn't be prescribed for anxiety in my opinion), so I was probably set up for Tourette's or neurological whatever. I do still have motor and vocal tics in my 30s. They come and go in intensity on several-week or several-month cycles.

The tics themselves switch out or morph every year or three. There are weeks I'd forget I had it if I didn't have the premonitory urge bit anyway. (Feels kind of weird, like holding down a sneeze. IN YOUR BRAIN.) Sometimes being anxious holds them in, and sometimes being anxious makes it come exploding out. Same with being calm. Either I'm so anxious I'm twitching, or I'm so calm I'm allowing myself to twitch. Or the opposite. It changes!

Report post

How long do your tics last individually? I find that simple tics tend to last many months, but complex tics only last a few weeks at most. I developed an echolalic tic where I would shout words that other people said recently. (Which inevitably turned into Copralalia. -.- ) It lasted a couple weeks, but most of my little tics, facial twitches and throat noises have been pretty constant this whole year.

Report post

I've recently taken interest in Magnesium deficiencies among EDS patients. In my research I've found massive amounts of evidence supporting magnesium deficiencies being linked to a wide range of mental and physical problems. I've found that you can be Magnesium deficient even in you have enough magnesium when you have elevated Calcium levels.Vitamin B is also critical as it is used to metabolize magnesium. Eating a high carb diet for years on end inevitably leads to magnesium deficiency. This won't show up on the blood magnesium tests, because most magnesium is stored inside the cells. "Blood tests for magnesium deficiency are irrelevant and unusable" Magnesium is a critical element in 325+ biochemical reactions in the human body... magnesium plays an enormous role in the transmission of hormones and neurotransmitters. I am a strong believer in taking a serious look at possible root of our many problems instead of masking our symptoms with drugs that are hardly effective and often times lead to many other issues.

Report post


I eat almost entirely vegetarian. Unless I have a disorder that actually impairs my ability to absorb it, I'm pretty sure I've got enough Magnesium. However I've heard that some people do notice improvement on Mg.

Report post

I do know that magnesium makes a big difference for me. I can tell when I don't take it. I take coq10 with it. there is also a connection between magnesium deficiency and mitral valve prolapse. there is a whole website about it that shows common coexisting issues and it describes us well.

Report post

One of my children has EDS and Tourette's.

Report post

All of my vocal tics are simple and vary between yipping, little whines, and sharp voiced inhales that people mistake for sneezes. I'm lucky to have never had a complex vocal tic (aka: actually saying stuff), but I've "felt my brain try to make me" blurt words fewer than several dozen times, is the only way I can think to say it. Never actually happened to date.

The simple ones involving big muscle groups, like pulling my head down to the side/shoulder up/leg up/entire right side contracts.. those have never lasted longer than a few months. I've had a few variations on that. The simple head-jerk to one side seems to be semipermanent, over 10 years now, but goes and returns over months.

The complex motor ones are weird because I do have OCD and they can be hard to distinguish. ("Something is bothering my OCD but I can't seem to control what my hands do about it.") I have a few of those, entirely involving my arms and hands, and they haven't changed since 1996.

You could totally know me for a couple-few months and quite possibly not catch me doing any of these things. Or you'll say "bless you" and I'll just say thanks. :P

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders