Tourettes getting worse.

My son has profound Tourettes, Aspergers, and a bucketful of co-morbidities, including a neurological disorder where his confused brain signals to the nerves in his body that they are undeer acute attack.
He was passing out from the pain sometimes hundreds of time in one day. Nothing came even close to easing the pain. It was a living nightmare. We had tried everything else, when we decided to try cannabis. L.J. was the second minor in the state of Colorado to receive the pink medical marijuana card.
Though not cured by any means, the cannabis proves to be no less than a miracle. Though we obtained the card for the neurological pain [truthfully, at the time, the tourettes, Aspergers, ADHD, etc. seemed comparitively mosquito bites versus cardiac arrest] and it has helped SO MUCH, we started noticing how the cannabis also helped with his AS[ relieving stress, all but eliminating super meltdowns, and helping with sensory issues] and has given him significantly more cotrol of the tourettes. The tics tend to be less pronounced, plus,they can almost always[not always] be either stopped or greatly minimized with a small ammount of marijuana plus a clonidine.

I'm not sure what life holds for L.J., but a few years ago a therapist gave him no hope for living any type of "normal" life. Though he will always have an abundance of hurdles, we now have even more an abundance of hope.

Vicki

I originally had undiagnosed Tourette symptoms back when I was 16 or 17, with "stuttering" and repetitive neck tensing forcing my head forward in a "yes" motion. Back then I thought it was just nervousness because it started when I asked a girl out at 2:00 in the morning during a big house party. It lasted, off and on, for about 3 days and then went away. My ex-wife then noticed a few episodes of "stuttering" during my 20's and early 30's, but no muscle tics per se. Then, when I was 38, I had a major lack of muscle control that lasted over 2 months. The doctors kept me in the hospital for a week trying to figure out what was going on, with the end result being a diagnosis of "symptoms are psychological" (yeah, right). What was discovered was that a virus mixed with an onslaught of muscle tics (which I had never had before) resulted in a referral from one psychologist to a psychiatrist with an interest in Tourette's. That's how I was diagnosed. However, over the last 5 years, I've been experiencing an ever-increasing variety of symptoms of both muscle tics and vocal tics. "Variety is the spice of life," they say, but damn, is it ever annoying! I've tried a few different medications such as Resperidone (which had nasty side effects on me), Pimozide (which caused me to gain 40 lbs. and, over long term use, I started having tremors in my hands and mouth), and currently, Cesamet/Nabilone (which is basically cannabis without the "high"). Even though I've lost the weight and feel a lot less depressed (I'm actually back to my ever-positive "I'm doing excellent!" train-of-thought to keep from going down that road again), I've started having some severe lack of control in my lower back and upper legs which forces my legs to shoot forward into a giant step as I try to walk, making me look like I have MS or something. On top of that, my right forearm will suddenly shoot upwards repeatedly like I'm doing speed dumbbell curls. That's on top of my neck tensing up and either shooting my head forward in a "yes" or to one side over and over again, bouncing off repeatedly once it reaches its stopping point (and does this ever hurt!). That and all my myriad vocal ticks of getting stuck on a sound, syllable, or phrase, growling and grunting, opening my mouth as if to say "ah" over and over again, and screaming out (and I mean "screaming") as if I was in severe pain, which I'm not. And though the Cesamet has helped in some respects, I still have to use a wheelchair at work every once in a while (otherwise I get exhausted with the awkward gait over long distances and long periods of time of walking). On top of that, my superiors want to put me on short term disability until this "passes" (really?), which I really don't want (I was on disability for 4 months 4 years ago and then 2 more months about a year later, so I don't want to go that route of deep depression again). The positive attitude is the only thing that's somewhat keeping the stress down, but I definitely see things progressively getting more complicated with my symptoms.

I've tried deep tissue massage and acupuncture with devastating effects, making me "go wild" like a rabid animal, but I've decided to try something completely different: hypnosis. My therapist seems to think it will help, so what do I have to lose? I'll let you know how it goes.

I am 30. Started showing signs that I havd Tourettes when I was 6 months old was diagnosed when I was 6 years old, stopped taking medication and started controling my tics natrally in high school and had no problem until a little more then three years ago after I had a stroke. I have healed fast but I lost control of my tics and now they are worse then ever. Has anyone else had a problem like this and figured out how to regain control let me know because the way I use to control then is not enough anymore.

my son Chris, 26 has had touretts since he was very young. He had always either blinked constantly for days and then went to clearing his throat constantly or shrugging his shoulders constantly. None of the numerous doctors that he had seen throughout his childhood every diagnosed this until he was in high school.

Chris had finally be approved for disability for this a short while ago but when he went to get medication for it the doctor there said that he thought he was just faking it and refused to give him medication for it. They also somehow lost all of his medical records. He recently had an MRI done last week which had taken months to schedule.

Today I called mom and she said that she had taken Chris to the emergency room because his back was in so much pain he couldn’t take it anymore. He also brought the results of the MRI which they requested to be sent to the house even though you can’t understand any of it unless you are a doctor. No doctor had seen them yet.

I just got off the phone with Chris apparently being dismissed from the hospital and they not only gave him medication but also told him he needed back surgery. His back problems were due to his tourettes.

Hi there,
I was 17 when I was diagnosed with tourettes. At first the Drs were unsure of what it was. I am now 28 and have to say that it's getting worse. I agree that the more stressed you are the worse the tics become.
I have been on about 17 different drugs since diagnosis, had cbt to try and change my thinking and also had botox into my neck and upper back but none of this helped.
Tyring to manage it is a killer but suppose thats part of having the syndrome.
I've read that tourettes gets better as you get older but I wouldn't agree in my case and I know many people that are in the same boat. Ive found that doing sport can help as obviously you're taking your enegery out on something else. But it's not like you can do sport 24/7 to cure it.
We all have our up and down days but hopefully you'll find something to help.