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clive

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I don't find much info on this, so I'm posting my own experiences, in case it helps anyone else in a similar situation.

I've somehow acquired Tourette's as an adult, in my early 40's. I've no history of TS symptoms as a child---I was a rabid nail-biter, but definitely no twitching, compulsions or anything else. Well-behaved, quiet, did very well in school, etc.. No obvious family history of anything related either (although limited family history is available).

The acquisition was not sudden, although the main impact was. I did some minor leg twitching in the throes of appendicitis many (10?) years ago, but that only lasted for a few hours while I was in emergency--I'm not even sure it's relevant. The real problems began around 4 years ago when I started having brief and small leg spasms sometimes at night while watching TV. This slowly increased over about 9 months, but was still at best a couple of twitches per night, only a curiosity. I then came down with some kind of chest infection, which accelerated things---one day I started twitching violently, lost control of emotions, had trouble breathing etc. I had several such major episodes over a span of a few weeks, with reducing severity. At the same time, however, much smaller arm, leg and head spasms started showing up.

The major episodes disappeared altogether, but the twitches kept increasing in frequency. I used to count them on my way to work, about a 25 minute walk. At first it was just 5-10 tics, then went up to 20, then up to 80, then up to 200, and then I gave up because I kept losing count, and wasn't sure if I was maybe just starting to twitch due to counting. Nowadays I twitch every 1-3 seconds; sometimes I feel like I'm vibrating. Initially these were just motor tics (head shakes, arms, legs suddenly flying out etc), but after several more months some minor vocal tics appeared. These are now fairly common, although still only a small fraction of the motor ticks. (More complex vocal tics have started to appear recently, but are not yet an issue, and hopefully won't be.)

I spent about a year and half being investigated for everything under the sun, getting test after test. My neurologist then was sure I had some kind of myoclonus or epilepsy, and I tried several medications, none of which helped (and all of which were unpleasant in side effects). It took almost another year to get an appointment with a neurologist that specialized in movement disorders. They immediately declared I had Tourette's, and also told me that adult onset was extremely rare, and little could be done. I tried a couple more medications (dopamine aggressors), but these actually did nothing. I haven't seen a doctor for well over a year, maybe 2.

I had strong doubts of the TS (more strictly speaking TD-NOS aka "Tic Disorder Not Otherwise Specified") diagnosis, mainly because when I read up on TS people were talking about holding back tics for hours. I can hold them back for maybe 15 seconds. I rarely have a sense of premonition (but do get a sense of build-up when trying to hold it back). That doesn't mean they're constant---when I'm talking to someone, working intensively etc my tics reduce dramatically, almost completely disappearing. But I have to be talking or very very intensely paying attention---it seems to be largely an affliction of self-awareness. There is also a sensory component, everything makes me jump, I feel constantly surprised, and the world is very bright indeed. If I had to describe it one sentence, I'd say the world has been turned up to 11.

Despite all this, and after some initial adjustment, it hasn't ruined my life. :) I looked at the Yale Tic severity test, and while I score around a 40/50 in tic severity, I'm only maybe a 50/100 overall--the overall life impact is small, at least so far. Walking is definitely harder, I avoid any situation where I have to sit passively, etc. But these are small things. I've also found a few coping techniques, eg by keeping one part of my body active/in-motion I can prevent tics in another part, at least for a while. I guess I've become good at disguising it too (apparently my head is very itchy).

Anyway, that's the gist of it. There's obviously some O from OCD creeping in too, and the tics are in a constant evolution (my legs almost never twitch unless I'm actually walking, and I no longer get easily "stuck" half-way through a fine-motion, but I've acquired more vocal behaviours). I don't know what is going to happen in the future; at the moment the worst I expect are problems stemming from the mechanical wear associated with constant, violent movements. My optimistic view is based on the fact that many to most childhood cases of TS seem to run their course in 10 years-ish, so maybe that will happen for me too---why not, this came from nowhere so it could go back there at any time too. :)
 

Xelebes

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Re: adult onset

My Tourette's seemed to be really aggravated during adulthood. The tics were always with me but never so much a problem until I hit my late teens (which disappeared for a couple years) and just recently in the last year where it is now a major problem in my life. Mine was caused by a combination of stress and the anti-anxiety medication I was taking.

As for holding them back, the only thing I am aware of doing is making the tics appear in the smaller tics and not so much the bigger tics. That's all I can do for a while. The bigger tics always come back with a vengeance though.
 

DsMom

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Re: Adult onset Tourette Syndrome

Wow, What an interesting story.
My son has TS and can't control his tics very long, but does seam to be able to if in public for a little while, but sometimes there is no holding back no matter where he is.
I have found that certain medicines make his tics out of control!!!!!
Anti depresants mainly.I nm afraid to give him alot of stuff now do to the unknown of what will happen. The anti dep were given for OCD.
I am so glad Clive that this has not reuined your life. I am hoping this will not ruin my sons. He is only 15 and at a bad stage with it all.
Take care :)
 

Retired

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Re: Adult onset Tourette Syndrome

Thank you for sharing your story, Clive. As you alluded to, adult onset Tourette is rare and is a controversial diagnosis.

Not everyone with Tourette can suppress their tics, and the amount of suppression or duration varies from person to person. Usually those who suppress experience a build up of energy that requires the eventual release of their tics, and so they will look for an opportunity to leave the environment in which they feel a need to suppress in order to release their tics.

Some will go into another room, a closed stairweel or into their car to get privacy, if that's important.

It's great that your disorder has not affected your lifestyle, which is the way it should be. People should accept you for who you are and should not be influenced by your disorder.

Have you considered pursuing further medical opinions to confirm the diagnosis?

Haveyou been in contact with a local Tourette advocacy group for support?
 

NicNak

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Re: Adult onset Tourette Syndrome

Usually those who suppress experience a build up of energy that requires the eventual release of their tics, and so they will look for an opportunity to leave the environment in which they feel a need to suppress in order to release their tics.

Some will go into another room, a closed stairweel or into their car to get privacy, if that's important.

If I may ask, I wondered if people with Tourette who suppress their tics. The build up of energy you mention.

If the person is not able to release their tics where they are comfortable or a place is not available, does this build up cause upset for example maybe like how a panic attack would? Or do the tics release on their own maybe when the build up happens?

I apologize if I do not explain the question well.
 

Retired

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Re: Adult onset Tourette Syndrome

NicNak said:
I wondered if people with Tourette who suppress their tics. The build up of energy you mention.

That's a good question. From the people whom I have known, and from my own experience, the build up of so called tic energy usually just results in some tics "leaking out". So if the person is suppressing their tics in a social situation, but cannot get away when they feel the need to tic, because the tics are involuntary, they may sneak a grimace or a grunt or an arm movement when they think no one will notice.

Tic suppression can become quite creative among people who are able to do it. They may redirect their tics to other body areas that either don't show, such as wiggling toes inside shoes, or feigning a sneeze or cough. There are lots of things people can do with hands, arms and legs that seem innocuous to those who don't realize these are actually disguised Tourette tics!
 

Xelebes

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Re: Adult onset Tourette Syndrome

For me it creates a panic attack or a meltdown (autistic). It's to the individual how t is dealt with.
 

levettra

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Clive, are you still there??

Your story helped me, 10 years later, to see that I am not alone.
Almost everything in your story rings true with my story.
Even the progression of the tics-small leg twitches while watching tv, progressing to Wilder leg, arm and hand movements, extra sensitivity to startle, etc. Increased tics when less busy, fewer tics while talking or busy with hands.

A couple of things don't match up. I did not have an infection that exacerbated things like you mentioned. However, at the same time the tics started, I had been given (and took) antibiotics and puffers for what they thought was a chest infection, or pleuricy, (but which turned out to be arthritis in my thoracic spine causing radiating pain) no major tic episodes like you described, though, with trouble breathing, etc.

I also do not have vocal tics.

I have been seeing neurologists for four years now, had two MRIs to rule out spine tumors and MS, and bloodwork to rule out other conditions. More bloodwork and another MRI with contrast are planned for six month out.

Was also told it is an adult onset tic disorder, but like you, I had no childhood tics at all, so it is puzzling why this would suddenly start.

I have not tried medications because the side effects that were read to me seemed to outweigh the benefits.

Thank you for posting your story ten years ago. It has helped me to read that I am not the only one in the world who is (has) going (gone) through this set of symptoms.

If you are still around in this forum, I would like to connect to hear more about how you are doing now, and anything else you tried with success.
 

GaryQ

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Hi levetra,

Adult onset of a tic disorder immediately removes ay possibility of it being Tourette Syndrome as one of the main criteria for a disgnosis of TS is that the Tics must have started before the age of 18 according to the DSM-5:

Three tic disorders are included in the DSM-5:

  • Tourette’s disorder (also called Tourette Syndrome [TS])
  • Persistent (also called chronic) motor or vocal tic disorder
  • Provisional tic disorder
The tic disorders differ from each other in terms of the type of tic present (motor or vocal, or a combination of both), and how long the symptoms have lasted. People with TS have both motor and vocal tics, and have had tic symptoms for at least 1 year. People with persistent motor or vocal tic disorders have either motor or vocal tics, and have had tic symptoms for at least 1 year. People with provisional tic disorders can have motor or vocal tics, or both, but have had their symptoms less than 1 year.Here are the criteria in shortened form. Please note that they are presented for your information only and should not be used for self-diagnosis. If you are concerned about any of the symptoms listed, you should consult a trained health care provider with experience in diagnosing and treating tic disorders.

Tourette Syndrome (TS)

To be diagnosed with TS, a person must:

  • have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
  • have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
  • have tics that begin before age 18 years.
  • have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).
Persistent (Chronic) Motor or Vocal Tic Disorder

To be diagnosed with a persistent tic disorder, a person must:

  • have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), but not both.
  • have tics that occur many times a day nearly every day or on and off throughout a period of more than a year.
  • have tics that start before age 18 years.
  • have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, seizures, Huntington disease, or postviral encephalitis).
  • not have been diagnosed with TS.
Provisional Tic Disorder

To be diagnosed with a provisional tic disorder, a person must:

  • have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase).
  • have been present for no longer than 12 months in a row.
  • have tics that start before age 18 years.
  • have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, Huntington disease or postviral encephalitis).
  • not have been diagnosed with TS or persistent motor or vocal tic disorder.

Source : https://www.cdc.gov/ncbddd/tourette/diagnosis.html
 

GaryQ

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It's also very important to note that TS is one specific diagnosis of the category called Tic Disorders. And not the other way aroud. Adult onset of any tic disorder even if it ressembles TS cannot by criteria be described or diagnosed as Adult onset of TS and the Name canot be used to describe other tic disorders because it must meet the specific diagnostic criteria of the DSM-5.
 

levettra

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Hi Gary

All of the diagnostic criteria you listed indicate that tics have to have started before age 18 years.
I had absolutely no tics at all before 2015. (I was 45 at the time)
I have persistent motor tics (legs, shoulder, wrist hand) for four years now.
No tics at all in childhood.

Where does that leave me in terms of the tic disorders you listed? I think the closest is persistent Chronic Motor Tic Disorder, but I didn't start having any tics until age 45.
 

GaryQ

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Sorry if it took me a while to respond. It can take me a long time to write a response and longer to edit it.

Those are good questions. Most if not all can't be simply answered for a few simple reasons.

1 - The 3 listed tic disorders are classified as tic disorders after ruling out secondary external causes for the tics like medication, brain trauma, and other illnesses such as Parkinson's so all other external or secondary causes must be ruled out.

2 - Tic disorders lack proper study. even Tourette syndrome is still misunderstood by not only the general population. from personal experience many medical professionals have little to no more understanding and knowledge because in many cases they often disappear or become moderate after adult onset and so it's still pretty much focused on children and hence still just commonly viewed and seen as a childhood disorder.

3 - Comprehensive Adult studies even for TS are almost nonexistent probably because of the fact that it's still seen as a childhood disorder. My personal opinion is there's no significant life threatening or debilitating large scale potential to make big bucks.

There is also one important thing to take into consideration: Tics are not constant and fixed.They can come and go away for years and are not fixed in time duration and actual tics. Are you 100% convinced beyond a doubt that you did not have any form of motor or vocal tic before age 18? I recommend you take a time travel trip into your memories and scan though behaviors and patterns and as you can when if you find anything potential stop the rewind button and start paying more attention to details. Doesn't mean it will work but it can help identify what could possible have been mistaken as just a bad habit. My first recollection of non obvious visible repetitive motor tics were seen as a ritual I'd constantly be scratching my tush crack and yanking up my jeans by my male things. I've worn holes through more pairs of jeans from pulling and scratching that area than anything else. They would still look brand new and have a hole. When playing baseball at bat they were in an actual pattern. At the time they were seen by all including myself as a weird ritual. They were repetitive and had a pattern but were unconsciously controlled. I'd walk down the street spitting and scratching uncontrollably. And to make a point I only got a confirmation it was TS after researching the day before my 53rd birthday.

Tics come in as many shapes and forms as people. They also vary in severity, consistency and visibility from one extreme to the other. and they only need to meet the specific criteria to be classified. They can come and go and change, I call it "replacement therapy as a joke" where my body would give one things a break for a while and replace it with another. Shoulder shrugging and twisting and squirming at the waist were my main tics that never seemed to fade along with nose movements in many different shapes and forms. And scratching too.

Vocal tics are probably the most commonly misunderstood of them all simply because of the name, "vocal" and how the swearing extreme is portrayed on media. Pretty much anything that makes noise from the head is a vocal tic. Tongue and lip, clicking clacking smacking and so on are vocal tics. Throat clearing, sniffing, snorting and spitting are also vocal tics. Yes spitting go figure. If I had known that, I would have discovered that fact I would have been able to pinpoint the exact time place and age that vocal tic started a loooong time ago.

All that to say there are as many potential other causes as there are tics and only a complete comprehensive and thorough medical and neuropsychiatric review from a competent group of doctors has any potential for coming to any diagnostic.

EDIT: Sorry if this isn't much help and simply informative (hopefully)
 

levettra

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Hi Gary
I appreciate the time you took to respond to me. It has been a frustrating four years, I will say, because of some of the things you mentioned - not much info out there about these tics / repetetive movements that I have.

To give you a bit of background on my childhood, I have a sibling who was adopted by my parents. He was diagnosed with Tourette syndrome in his early years. My parents became enveloped in the Tourette community, reading everything that was available, and meeting with Dr. Duncan McKinley, who is considered to be a leading expert among "leaky brake" disorders, as he calls them. My parents were even on the board of the Tourette syndrome chapter in our community. All of this was in an effort to get as much information as possible so that they could help my adopted brother have the best chance at success. They became so attuned to what "tics" and repetetive behaviours look like, that they were able to spot even the most subtle tics in people they saw just walking past them on the street.

So, when I say I didn't have tics as a child, I know this for a fact. I am certain that if there had been even the slightest hint of a tic, it would have been spotted by my hawk-eyed parents! LOL! The first tic I ever remember having was in March of 2015.

As far as having tics as a result of some other disorder, that hasn't been completely ruled out. I have been to my family doctor, and three neurologists of varying specialties. They have ruled out anything that one might consider "bad", such as MS, Parkinsons, tumours, and a variety of other rare auto-immune disorders. Nothing, of course, is easy to figure out. I have been told that the motor movements I experience are much more "tic" like than anything else (such as myoclonus, chorea, tremor, etc). The most recent neurologist, who specializes in movement disorders, has said that she is certain it is an adult onset tic disorder. She has said it is very rare to have this without some other condition to cause the tics, and that not much research has been done on it. That is why she is continuing to investigate with ever more bloodwork, and another MRI (this time with contrast) scheduled for 6 months out just to make sure we aren't missing something. She recognizing it is frustrating to have no cause when the condition came on so suddenly.

If it starts to impact my quality of life more greatly that it does now, I may consider a medication trial - however, at this point, the potential side effects outweigh any benefits, in my opinion.

The tics I have started literally out of nowhere in March 2015, and have progressed from very mild, occasional (4 or 5 per evening) to more varied, obvious, and disruptive tics that happen sometimes hundreds of times per hour - more often when I am under stress (or a passenger in a car for some reason).

I do appreciate having someone to chat with this about - so thank you once again for all of the information - it is quite helpful.

Enjoy your evening!
 

Daniel

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From one of the relatively few articles on the subject:

Tic disorders are generally considered to be of pediatric onset; however, reports of adult-onset tics exist in the literature. Tics can be categorized as either primary or secondary, with the latter being the larger group in adults. Primary or idiopathic tics that arise in adulthood make up a subset of tic disorders whose epidemiologic and clinical features have not been well delineated...

The epidemiologic characteristics, clinical phenomenology, and optimal treatment of adult-onset tics have not been ascertained. Twenty-six patients with adult-onset, primary tics were identified from prior case reports. The frequency of psychiatric comorbidities may be lower in adults than in children, and obsessive compulsive disorder was the most common comorbidity. Adult-onset primary tics tend to wax and wane, occur predominantly in males, are often both motor and phonic in the same individual, and are characterized by a poor response to treatment.

We know little about adult-onset tic disorders, particularly ones without a secondary association or cause. They are not common, and from the limited data available, appear to share some but not all features with childhood tics. Further research will be important in gaining a better understanding of the epidemiology and clinical manifestations of this disorder.

How Much Do We Know about Adult-onset Primary Tics? Prevalence, Epidemiology, and Clinical Features

Some other academic articles if you haven't seen them already:

Google Scholar

Google Scholar
 

GaryQ

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My pleassure and although tics aren't fun and having them as an adult is even more frustrating because of the stigma and less of us have them though adult life.

Since the tics had been getting worse and probably my tolerabilty to them more so. I fought with a psychologist, my GP and cardiologist for months to replace my beta blocker (heart meds) with Clonidine as it served the basic same purpose but is also known and used to help with TS although not a fact they seemed to understand or grasp. It pretty much helped along with clonazepam to reduce my anxiety. Greatest comment I heard one day was "You don't have Tourette's" to which I had a big smile and said Thanks :) It erased many "was the coke good?" And "Think maybe a kleenex might work?" to name some of a million snode comments and all the occsaional mocking and imitating my siffing and snorting during my working years.

So although the tics ain't fun and there ain't much info or support for us adults knowing you're not alone is somehow comforting whatever the reason or cause (really happy to hear they ruled out the major serious things like MS and parkinson's)

The forum can offer one thing that is better than medication and that is just peer support and since we're a serious and silly bunch you might find that just hanging around to hang around while you go through the stress of finding out what's causing the tics could be beneficial.


Your diagnostics journey would probably add valuable insight and might shed more light on the possibility of Adult onset TS being a reality and it wouldn't be a first in proving the specialists and the DSM wrong.

Hope you stick around! Feels comforting not being the only one with a tic disorder around here
And please keep us updated one any progress or updates
 
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