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Posts posted by guy123

  1. I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?


    Marinol is prescribed legally for tics, tho I am not sure if it is available in all states



    Yeah, but good luck finding a doctor who will actually prescribe it. Mine told me "yes it works, but no, I won't give it to you."


    Also, I've heard it's ridiculously expensive... like hundreds of dollars per month. Buying weed on the street is cheaper, lol.


    Every instance I've heard of Marinol being prescribed is for cancer patients (to help with nausea from chemo, but only after every other anti-nausea agent has been tried) or for patients with terminal wasting conditions, like AIDS.

  2. Omega 3s are very beneficial, too. He would do well to take some fish oil or flax oil supps, or just to include fish in his diet. Be sure it is a good quality and the supps don't have a lot of artificial ingredients in them.


    Strangely enough, eating fish sends my tic into overdrive for a few hours after the meal.


    ...which sucks because I LOVE fish.

  3. Geez, Abilify is a strong medication (with equally strong side-effects) to start treatment with.


    If he wants to go the medication route, there are much safer drugs to try first. If they don't work, then move on to the heavy stuff.


    The light ones and their side-effects:



    - drowsiness

    - decreased sexual performance

    - lowered blood pressure (dizziness upon standing)



    - same as Clonidine, minus the drowsiness



    - weight loss

    - change in taste

    - nausea



    - short term memory loss

    - increased appetite

    - euphoria

    - legal side effects (in other words, it's probably illegal where you live)


    Pretty much any "drug" that isn't one of those three is going to either not work very well (based on what I've read) or is going to have potentially horrible and/or fatal side effects. This includes Abilify, and every other drug in that (atypical neuroleptic) class.


    See this list for nearly every drug that has been tested on tourettes syndrome and tics along with results, side effects, and all the other info you could want.




    That's my site. Sorry the colors are so ugly. I'm gonna revamp it soon when I have time.

  4. edit - video in post 2


    I don't usually watch the show anymore, but I watched tonight because Neil Patrick Harris was a guest judge and I think he's hilarious on "How I Met Your Mother."


    Anyway, on the show tonight, there was this guy on there who had Tourettes. It wasn't anything I would consider extreme... he had a throat clearing tic and some head shakes and facial grimaces, but not really too bad.


    They did a little story about him beforehand where he talked about being diagnosed as a kid, and also about how his tics go away when he sings (similar to that drummer on that other show whose tics to away when he plays the drums).


    He was a good singer. NPH asked him if he had Tourettes (I thought it was weird to ask that question???) but the guy was cool, he said "yeah, I have Tourettes Syndrome" and the judges all noticed that "it goes away when you sing?!"


    Anyway, the guy got through to the next round (Hollywood) so you will probably see him again once the show gets through the preliminary rounds. I believe it was Simon who said "I think people are going to like you" or something to that effect. NPH said he thinks the guy was "brave." (for coming on TV with TS?)


    Anyway, it would be cool if he became popular --> spread awareness of TS --> bring to public light --> more funding --> develop cure :)


    Of course that's probably wishful thinking, but whatever.


    Anyway, I figured this forum might want to know.


    edit - Dave Pittman is his name.

  5. Hi All,

    Just wondering if anyone has had the Yasko Genetic testing done? If so, was it helpful and did you follow the supplements after?

    If you had the test done, could you please post your experiences, like did it help tics, Pandas etc. Thanks Char...


    I've never heard of it. What is Yasko Genetic Testing? What does it do and where can one have it done?


    bump - what is this?

  6. yes Guy I am VERY sure


    dopamine is the neurotransmitter that people with TS are hypersensitive too, NOT deficient in


    people with TS do NOT want more dopamine


    they DO often need more serotonin, especially if they have comorbid OCD




    I misread your post.


    I read "defective" instead of "deficient," hence my questioning. I know you're not supposed to increase dopamine in TS patients which is why I got confused when I misread your post.



  7. when we used medication for my son to try to help reduce the tic severity, we got precious little tic relief, and a whole heap off added side effects that were way worse than the tics!!


    Yes, some people do find help from meds, and feel the benefits are worth the potential side effects, but

    I would again urge everyone to do very careful investigation on the potential side effects before making the decision to put a child, with a still developing brain, on "medication" for tics, especially when there are more natural ways that may help. We found that the doctors gave glib "minimal and rare side effects" answers when we asked, but the experience we had with my son, on a variety of meds, was horrid!!


    I wasn't implying everyone should jump into medication, just that it's the method in which I would place the most faith.


    Perhaps I should add the following caveats:


    1. I would be more hesitant to use medication on a developing brain (i was 27 when I started so that wasn't really an issue)

    2. Do crazy amounts of research and don't just use what the doctor says at the dose the doctor says. Some of the side effects are worse than the tics.

    3. If it's a child we're talking about, chances are he/she will "outgrow" the tics by late adolescence/adulthood, anyway

    4. Try all the safer/cheaper stuff first. Diet/allergies/sleep/vitamins/supplements/etc.

    4.5 ...just do research on supplements, too. We don't need any "help my child is having GABA withdrawal" threads.


    5. Donate to medical research/technology charities... Just saying :) TS/tics should be fully and permanently suppressible without side effects, if not curable. Go research, go!

  8. how are you doing on the clonidine??


    I'm pretty happy.


    I'm taking 1/4 of a 0.1mg pill at night, so my daily dosage is 0.025mg. It's a very low dose.


    My doctor told me to originally take 0.1mg (an entire pill) but being cautious, I started with half a pill (0.05mg). I noticed a decrease in my tic for the most part, but I was also super tired all the time, dizzy when standing up (from the lowered blood pressure), and after a few months started experiencing sexual side effects.


    So I cut the dosage in half again (from 1/2 a pill down to 1/4 pill) and the sexual side effects went away, but I still noticed an effect on my tic so I was happy.


    Overall, before I started treatment, my tic was an 8 out of 10 every day (1 being no tic, 10 being constant). After being on Clonidine for 1.5 years (1/4 pill for the last year), I would say that, on average, on any given day my tic is between a 3.5 and an 8. Some days it is significantly lessened, other days it's in full force. And sometimes it's just bad for a few hours each day.


    Understand that while that is less than perfect, before I started the medication, every single moment of every single day it was an 8 out of 10. My tic is a hard eye blinking tic, and unmedicated, it occurs probably 5-15 times per minute throughout the entire day, and it was like that for 10 years since it started.


    So, on Clonidine, it's down to maybe 2-3 times per minute, sometimes even less, which is such a relief for me. It's less embarrassing, and it's less annoying. My eye muscles used to get sore from having to blink so much. Of course, there are still some times when it's back up to being as bad as it used to be, but that's usually only for a couple hours every now and then, or if I eat something bad, or don't get enough sleep.


    And honestly, Clonidine's side effects aren't bad at all when compared with the more "heavy duty" tic drugs. So even tho having a tic sucks, I really can't complain about the Clonidine.


    But I'm on such a low dose. I don't know how people take up to 3 entire pills per day. Even 1/2 of 1 pill made me sleep through most of the day and made me almost black out every time I stood up.


    any info on intuniv?


    I've never even heard of it. I'll see what I can find.

  9. Risperdal (will NEVER go there)


    Good. Stay away from the neuroleptics and atypical neuroleptics unless you absolutely can't help it.


    I did a ton of research on tic treatments. Here is a list of all the medications I've found, how they work, side effects, and other notes:




    Sorry, that website is ugly and I need to clean it up.


    Anyway, of the dozens that I looked into, there are only 4 that I would ever consider trying myself:


    1/2. Clonidine/Tenex (I'm currently on Clonidine)

    3. Topamax (people here have good success with it)

    4. Marijuana (your local laws may vary, but it seems to work very well for most people)


    All the rest of them have horrible side effects, don't work well, or both.

  10. I was wondering if someone can help me understand some things my son is going through since I have never had tics. First off, do tics have a tendancy to be strong in the morning since they have lay dormant throughout the night?


    Not with me. Altho I find that mine don't really start until I actually get out of bed.


    Also, if my son is able to somehow delay some tics at school, will they be stronger as soon as they get home?


    I've heard a lot of people say yes, that is the case.


    I am assuming that is the case so if that is true, is there anything he can do to lighten the burst?




    I have never experienced them


    Usually, it's preceded by a feeling that you have to do something. The only example I can think of is this: don't blink. Soon you will start feeling like you have to blink. Don't. Pretty soon, you will HAVE to blink. It doesn't matter how strong your will power is, or how focused you are, or anything else. You will eventually HAVE to blink, and you will blink.


    That's not exactly it, but that's as close to describing the urgency of the situation. Although usually with tics it's not relieved until there is a strong muscular contraction (part of the reason why most tics are not "gentle" movements) which alleviates the "urge" for a few seconds/minutes/whatever.

  11. Hi All,

    Just wondering if anyone has had the Yasko Genetic testing done? If so, was it helpful and did you follow the supplements after?

    If you had the test done, could you please post your experiences, like did it help tics, Pandas etc. Thanks Char...


    I've never heard of it. What is Yasko Genetic Testing? What does it do and where can one have it done?

  12. Did it help with the ADD? focus/attention/getting things done? are you still giving that? or no?


    That's what I'm curious about. I feel like I'm getting adult-onset ADD (is that even a real thing?). I'd like something to supercharge my performance every once in a while but not if it's going to worsen my tic.

  13. Hello everyone!



    Has anyone had their child on allergy shots? Did it make tics worst? Any info would be appreciated. We went to his regular allergist the other day and found out he is highly allergic to all molds and dog saliva (we don't have one so not worried too much though he is devastated). Anyway the doctor recommended allergy shots for the mold and dog. Some of his food sensitivites from the IGg came back positive on the skin test (Green beans, watermelon, egg whites, milk, cashew, bakers yeast). She said that I should just limit these but not take them away.

    From all that I have read it seems that everone takes away all the food that they are sensitive to. For how long should I take all the foods away from his diet before I try to reintroduce them back?



    For what it's worth, I never had a tic until I was 17 and started getting allergy shots on the recommendation of my friend. I never finished the course of treatment.


    11 years later and I still have the tic.


    I have no proof that it was the allergy shots that caused it, however. I read somewhere that allergy shots don't even contain mercury. But I've heard all immunizations, mercury or not, cause acute brain inflammation.

  14. I took Wellbutrin the other week (more for anxiety/depression) and boy, did it exasperate the tics!!!! I've never ticced (all vocal) that much .. EVER!! I was ticcing all day, non stop, continuous and loud. Thank goodness i did not get fired! I would not have been surprised if they did.


    I spoke to my doc and he said "possible" (because it is an activator - activates the brain vs sedating it) so got off it immediately. Whew... I got so upset and depressed because it was so bad. Went back to normal in 1.5 day. (normal - lots of tics but not THAT bad.)


    I've read a lot of reports of Wellbutrin causing/exacerbating tics. Is it used for ADD/ADHD a lot? I've only heard of it being used for anxiety and depression and stuff.


    I can understand why it may exacerbate tics because, among other things, it's a dopamine reuptake inhibitor (so there's more dopamine floating around in your brain for longer periods of time). Increasing dopamine is commonly thought to increase tics (which is why cocaine exacerbates them, and neuroleptics tend to reduce them).

  15. The stimulant meds rx for ADHD are known to trigger tics in some people even those who have no prior history of tics


    I wonder if these people were like just on the borderline of having tics and the meds pushed them over the threshold (dopamine modulation?).




    Alright, I was interested in Ritalin or Adderall but after reading these replies, sounds like I might want to avoid them since they might (permanently) make things worse.

  16. Does anyone have any experience with ADD or ADHD medication being given to someone with tics?


    Please discuss the medication that was used, whether it was used for ADD or ADHD, and if it had any effect on tics. If it exacerbated them, did they return to normal when the medication was discontinued.



  17. By the way, my husband brought home today a brochure from a dentist office, that advertises a lower teeth device for athletes, that looks a lot like the device Sims and Stack are using. It claims "unleash your athletic potential", and is based on the fact that a natural tendency to clench teeth pinches the nerves that go through the TMJ and releases cortisol and similar stress, fatigue and distraction inducing hormones. Thought it was interesting.


    That's very interesting. I've noticed that when I lift weights I clench my teeth a lot. The other day one of my molars was even sore after I got back from the gym.

  18. I ate a ton of pistachios again today (it was really the only thing I ate all day since my stomach wasn't feeling good) and I haven't had any exacerbation of symptoms at all.


    Maybe it was something else the other day.


    Or I saw that pistachios have manganese. Didn't some people here report that manganese can exacerbate tics?


    Pistachios are delicious so I don't mind testing this theory more :(

  19. Drs. are in agreement her health was caused by the flu shot, and believe that detoxing her would help get rid of the "toxins" in her body that was causing her to have seizures every 45-60 sec. She is reported to be improving with treatment and good results to her central nervous system.


    What was the treatment? I know that particular Dr believes in urine injections and other weird stuff.


    I saw a youtube clip where she was talking normally again so I'm assuming she's "cured." Did they just chelate her? Urine injections? Some other voodoo treatments?


    Are they saying that the original diagnosis of "dystonia" was wrong, then? You can't cure dystonia. Especially not with urine injections.


    In fact, if she was actually sick and now she is actually cured, that is proof that she did *not* have dystonia to begin with.

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