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I feel like I have lost control of my tics.


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Hey everybody, I used to have an account here but seems like the usernames had been reset or something. I wanted to come back and seek some help from experienced members. This might be a long post just a fair warning. A little about my self, I am 26 year old male and have had my tics since I was a kid. I have not been diagnosed or even seen a doctor for these tics. I am more that sure I have TS due to having multiple motor tics and a couple vocal tics. Ill put a list of my tics down under here.

 

Tics:

Eye blinking

Neck jerking

Full body jerking

shoulder jerking

hand and finger moving

Leg moving

Throat clearing

Making a hmm noise

A sound that i can only describe as a donkey noise

etc.

 

I recently moved to a new place and I am trying to figure out what may have caused the massive flare up in my tics. I have not had any single vocal tic for maybe 5 years up until last summer June 2014 which was before I moved into my new house. I had a vocal tic from June 2014 to about August 2014. The vocals went away from august till about December, as a matter of fact there was a 2 month period where I was about 99% tic free. Then randomly my tics blew up into a horrible uncontrollable way. I pretty much had maximum 5 seconds of tic free time during the day. They were so bad I started to get depressed and did not want to leave my house. I had already moved into my new house at this point, after about 2 months they some what calmed down, but the vocal tic had not stopped after a month of more calm tics they increased once again and here I am today.. Multiple high frequency vocals and motors.

 

At this point I am starting to get depressed again feeling like I have zero control over my mind and body. I hate being out most of the time because i am just uncomfortable 90% of the time. I have been doing some research and I have conflicting theories. Many places say that there is no evidence that proves that natural treatments such as diet changes and supplementation help and this website says they do.

 

I have tried tons of supplements with zero luck. I have tried multivitamins, l-carnitine, taurine, B complex, fish oil, flaxseed oil, magnesium citrate, calcium citrate, inositol, and more. Zero luck with any of these supplements.

 

Could I possible have a environmental allergy? I tried to use a nasal steroid for allergies and I think it may have blown up my tics once again. I feel this way because they eased up a bit once I stopped.

 

What can I do guys? I really don't want to do on meds because I have read way too many negative reviews on them. I know I cant cure this but I just want to reduce my tics by half at least and get rid of the vocals. I want to feel more relaxed and be able to be happy when I go out. I have not even been able to properly workout at the gym which is my passion, because my tics are horrible when I workout.

 

Im afraid of going to the doctor, because I have no insurance and it feels like any time they hear that they see nothing but dollar signs.

 

Any advice is appreciated thank you guys.

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Hi

yes, it sounds like something in the new environment triggered the tics

 

I have posted many times about how we were warned to stay away from steroids as they trigger more tics due to being dopaminergic, so perhaps the inhaler made things worse.

 

Are your tics worse inside the new house or also bad in it's yard.

If you look at that tic trigger article you might get some clues?

http://latitudes.org/finding-triggers-for-tics-a-must-read/

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The thing is my tics are actually bad everywhere except when im relaxing at home and laying in bed, then everything just calms down. When I get up to get ready to go out when I go out and drive and do things then my tics freak out. When i am sitting down on my laptop relaxing watching tv the tics usually calm down to a point where its manageable.

 

For this reason I feel like its not from the house, but that brings me back to square one because nothing else has changed. My diet is the same as always, so i don't think anything is increasing my tics there.

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Not sure what more to suggest than to compare the environment of your new home with the potential tic triggers list

 

Is it in the same city as before? different area/neighborhood? ie what is different in your surroundings outside the home?

 

Do you have the same car as before? Doing the same work?

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Same city as before just a block away from the old house. I wouldn't say there is much different outside im sure some trees are different but really its about the same.

 

I have the same car and actually quit my internship due to feeling it was taking away from my sleep which might have been causing the tics. More sleep did not help.

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There is. Company Seagate Products that makes a homeopathic nasal spray with olive leaf extract. My friend told me about it because my son is allergic to preservatives in medications. By what you describe it does sound like you do have environmental triggers but seeing you can't get tested you will have to try and calm down your immune system. One thing you can look into is essential oils. My child has tics and was getting frequent headaches. On Facebook there is a site The Oily PANDA and a lot of parents use oils to treat their kids. They make up a blend for allergies and for other symptoms. On that site I asked about tics and headaches. I was told about 3 different oils and I chose Vetiver because a study was done but it was for ADHD. I asked the mother who told me about it if her child's tics decreased and she said at first she used it for ADHD but after 2 weeks tics were gone. I have been using this oil and Sweet Marjoram which also helps with tics. I put each in a separate roller ball with a fractured oil. I ordered Sunflower oil for my child because he has a coconut allergy. I also ordered Breath Ease because he has allergy and sinus issues and diffuse it at night by his bed. I ordered these products from Native American Nutritionals. They also have a supplement you can read about which is called Defense that is suppose to calm down your histamine response naturally. You can also try for 30 days going gluten and dairy free and then introduce gluten to see how you feel, then wait a week or two and reintroduce dairy. They are imflammatorues so changing your diet might also help. My child's big trigger is gluten and soy. He did not test positive for wheat but when he eats gluten he will tic. His doctor said his body thinks gluten is an infection. Hope this helps!

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Thank you trishb, I will give those a try.

 

I really need to find this trigger, because these tics are really depressing me and its pretty hard to enjoy my day and be happy like this.

 

I want to get some allergy testing done after saving some money. How can i do that? Is there a test that is recommended for this?

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You can also try going to a Naturopathic Practicioner. I took my child today because his tics have increased this week. We have a conventional doctor but my child is allergic to preservatives. I really liked this person and she recommended Vitamin C, Meriva, Omega 3, Acetyl-L-Carntine and Xlear nasal spray. That might be an economical route for you to try. She eventually wants to work on my child's allergies. Just make sure it is someone who has a good reputation in your area.

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  • 4 months later...

Hey everybody, I used to have an account here but seems like the usernames had been reset or something. I wanted to come back and seek some help from experienced members. This might be a long post just a fair warning. A little about my self, I am 26 year old male and have had my tics since I was a kid. I have not been diagnosed or even seen a doctor for these tics. I am more that sure I have TS due to having multiple motor tics and a couple vocal tics. Ill put a list of my tics down under here.

 

Tics:

Eye blinking

Neck jerking

Full body jerking

shoulder jerking

hand and finger moving

Leg moving

Throat clearing

Making a hmm noise

A sound that i can only describe as a donkey noise

etc.

 

I recently moved to a new place and I am trying to figure out what may have caused the massive flare up in my tics. I have not had any single vocal tic for maybe 5 years up until last summer June 2014 which was before I moved into my new house. I had a vocal tic from June 2014 to about August 2014. The vocals went away from august till about December, as a matter of fact there was a 2 month period where I was about 99% tic free. Then randomly my tics blew up into a horrible uncontrollable way. I pretty much had maximum 5 seconds of tic free time during the day. They were so bad I started to get depressed and did not want to leave my house. I had already moved into my new house at this point, after about 2 months they some what calmed down, but the vocal tic had not stopped after a month of more calm tics they increased once again and here I am today.. Multiple high frequency vocals and motors.

 

At this point I am starting to get depressed again feeling like I have zero control over my mind and body. I hate being out most of the time because i am just uncomfortable 90% of the time. I have been doing some research and I have conflicting theories. Many places say that there is no evidence that proves that natural treatments such as diet changes and supplementation help and this website says they do.

 

I have tried tons of supplements with zero luck. I have tried multivitamins, l-carnitine, taurine, B complex, fish oil, flaxseed oil, magnesium citrate, calcium citrate, inositol, and more. Zero luck with any of these supplements.

 

Could I possible have a environmental allergy? I tried to use a nasal steroid for allergies and I think it may have blown up my tics once again. I feel this way because they eased up a bit once I stopped.

 

What can I do guys? I really don't want to do on meds because I have read way too many negative reviews on them. I know I cant cure this but I just want to reduce my tics by half at least and get rid of the vocals. I want to feel more relaxed and be able to be happy when I go out. I have not even been able to properly workout at the gym which is my passion, because my tics are horrible when I workout.

 

Im afraid of going to the doctor, because I have no insurance and it feels like any time they hear that they see nothing but dollar signs.

 

Any advice is appreciated thank you guys.

Hi there. Stress, anxiety, being tired, etc can make tics much worse. Most people with TS find that when they concentrate on something that their tics lesson. I have found this myself. I know for a fact that when I am expecting stress, anxiety, etc., that my tics will kick up big time. I've tried everything under the sun, and came here looking for some hope myself. I've had TS + since 6 and I just turned 43. I hope you're able to find the answer it seems we both seek. Take care and good luck! *J*

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  • 2 months later...

Just want to say I'm going through a similar thing at the moment, facial tics have gone out of control over the past week or so after most of my life having pretty much control over them. It's really tough and certainly affects your quality of life. Mine may be to do with a recent low grade virus I've had but just like you I'm only guessing. I certainly hope it changes soon. I don't have your answers but it helps to know others are going through the same things, let us know any progress you make. Take it easy!

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  • 2 weeks later...
  • 2 weeks later...

AHB900, you mentioned in an early post that your tics go away when you are lying down, sitting at the computer or watching TV, but they start up when you move. There is a type of tic disorder that is connected to movement. This is how we explained it in our book:

 

"Reports to ACN suggest that the sensation of physical movement itself, such as going from a stationary position to one of action, can cause tics to increase...Gerald Erenberg, MD, advised ACN that when tics begin with the anticipation or the onset of physical movement, as when preparing to start running, it may be symptomatic of a rare brain disorder known as paroxysmal kinesiogenic choreoathetosis. A movement specialist should be consulted for a proper diagnosis and treatment.

 

Please consider your tics and whether you think they might be connected with movement in this way? It may not be a match at all for what you are experiencing, but your description caught my eye and it might be something to rule out.

 

Wikipedia says:

Paroxysmal kinesigenic dyskinesia is diagnosed using a strict set of guidelines. These criteria were studied and confirmed by Bruno et al. in a study of 121 individuals with PKD.[3] The age at onset is between 1 and 20 years old. The attacks of involuntary movements last less than one minute and have a known trigger, usually a sudden voluntary movement. For example, if a PKD patient stands up or begins walking after being sedentary for a period of time, or a person goes from a walk to a run, it can trigger an attack. Persons with PKD do not lose consciousness during attacks and have a full memory of the entire attack. Lastly, people with the disorder have a good response to medication and are usually prescribed anticonvulsants. The study also found that patients with familial PKD exhibit symptoms that follow the diagnostic criteria closely, while sporadic PKD individuals may deviate slightly.[5] Prior to criteria for diagnosis being set out, many patients with PKD were often diagnosed with some form of epilepsy. Unlike epilepsy, patients with PKD do not lose consciousness during attacks. In addition, individuals with PKD generally have normal postictal neurologic exams. However, many patients also experience an aura, similar to those experienced with epilepsy, preceding their attacks. Some patients describe it as a tingling sensation in the affected limb or “butterflies in their stomach.” Some individuals also have precipitants, such as stress and anxiety that make it more likely for attacks to occur.
The above diagnostic criteria also set PKD apart from the other paroxysmal dyskinesias, which include
paroxysmal nonkinesigenic dyskinesia (PNKD) and paroxysmal exercise-induced dyskinesia (PED). While PKD attacks last less than one minute, PNKD attacks last a few minutes to a few hours, and as the name suggests, the attacks do not occur because of a sudden voluntary movement like PKD.[5] Additionally, PKD can almost always be managed with drug therapy, while PNKD is not as responsive to anticonvulsants. PED, on the other hand, separates itself from PKD in that it is caused by prolonged exercise. Attacks from PED will cease soon after exercise is stopped.[5]

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