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guy123

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  2. retainer causes vocal tic

    in Tourette Syndrome and Tics

    Posted

    Lends some support to what the guy was saying about the trigger for tics being some facial nerve and putting those sticks in that guy's mouth to stop his tics.

     

    Or it could just be a reaction to something in the retainer.

     

    I had a retainer as a child on both the top and bottom. Occasionally I have dreams about wearing it, but that's probably just because I grind my teeth at night. I also have dreams about my teeth falling out, which I always thought was weird until we learned in psychology class in high school that that is one of the top 10 most common nightmares :blink:

  5. For those of you also dealing with Crohn's disease

    in Tourette Syndrome and Tics

    Posted

    Guy, any time you need a title change, you can just ask me and I will do it for you. Most forums dont allow title edits.

     

     

    yes, my son has Crohn's Disease and yes, I have posted before that he takes extra vit D3 daily, in addition to the vit D he gets from diet

     

    as his tics are very mild, we can certainly say the extra vit D is not a trigger, and if anything a benefit

     

    vit D3 also helps with mood and depression, and is also believed to have anti-carcinogenic properties

    we use the small oil caplets by NOW

     

    Thanks for the title change, Chemar! Most of the forums I go on are vBulletin and they allow title changes, or maybe it's a setting. Anyway, it doesn't matter.

     

    So is vitamin D3 the only type of vitamin D? I was going to buy some the other day but I didn't know enough about it. It seems to me that if there was only one type of D vitamin, that the "3" suffix would be unnecessary (like how you have Vitamin C, but there is Vitamin B6, B12, B3, etc.).

     

    Are there different types to be aware of? For example, like how with vitamin B12 there is cyanocobalamin and also methylcobalamin.

     

    How much should you use in a supplement? I saw some pills that were from 400IU (100% RDA) up through 2000IU. Vitamin D is fat soluble so I wouldn't want to take too much of it.

     

    Thanks!

  6. Tired out from twitching while walking

    in Tourette Syndrome and Tics

    Posted

    Yes, it's OCD I'm supposed to have, and there are some things about it that are like OCD and not TS, so it's not plain TS either. I think it's more OCD than TS. But there are just a few things that are not at all like OCD and exactly like TS. For instance, I don't get scared if I don't do the compulsions at the appropriate time (the typical OCD scenario). I just have an increasingly strong urge to do them, which gets worse until I have to give in (as with TS). That, or else I have to do them before I can do something else, say sit down on a chair, and in just the same way I can't make myself sit down until I've done them.

    Another difference I've noticed is that there's never any reason why I have to do something in a particular situation. Not even a silly reason. Again, like TS.

    I keep noticing odd mentions of "tourettic OCD" on here, but I can't find any very substantial bits of information about it. Can anyone help?

     

    I have a .pdf article on "Tourettic OCD" somewhere. I will see if I can find it and upload it.

  7. Off topic: we're sick

    in Tourette Syndrome and Tics

    Posted

    Must be nice. For some reason, every time I get a cold, the "sore throat" lasts for 4-5 days and is hellish. Sometimes the next symptoms (stuffy nose, sneezing, etc.) don't even start until 4-5 days later.

     

    Ever since I got mono when I was 17, my colds have always contained the worst sore throats ever. I have to take Vicodin just to make it through the day. Last time I had a sore throat, just talking to someone made my eyes water from the pain. When I had mono I had a sore throat for a few weeks and it was going up into my ears as well. I wonder if something got messed up in that area because like I said, ever since then, my sore throats have been awful.

     

    I've tried every remedy, western, eastern, and homeopathic, vitamin C, Airborne, Cold-Eeze, echineccea, goldenseal, Chinese herbs, apple cider vinegar, cayenne pepper, cold calm, Boiron pellets, zinc, colloidal silver, etc., and nothing works. Except narcotic pain killers wtchs.gif

     

    Prior to getting mono, whenever I got a cold I had a mild to moderate sore throat for a day or two, and that was it.

  10. For those of you also dealing with Crohn's disease

    in Tourette Syndrome and Tics

    Posted

    edit - I know I spelled Crohn's wrong. But this stupid forum software won't let me change the title. LAME!!!

     

    I remember a few people here either had it themselves or had children with it. A few gastro specialists still aren't sure if I have it, but I know enough about it that you can't just treat it by taking a vitamin.

     

    That being said, I found this new study published Jan 27, 2010:

     

    A new study has found that Vitamin D can counter the effects of Crohn's disease.

     

    Researchers found that Vitamin D acts directly on the beta defensin 2 gene, which encodes an antimicrobial peptide, and the NOD2 gene that alerts cells to the presence of invading microbes.

     

    Both beta defensin and NOD2 have been linked to Crohn's disease. If NOD2 is deficient or defective, it cannot combat invaders in the intestinal tract.

     

    Source: http://www.eurekalert.org/pub_releases/201...c-vds012710.php

     

     

    Now, has anyone had any experiences with Vitamin D and tics?

  11. Tired out from twitching while walking

    in Tourette Syndrome and Tics

    Posted

    Among a lot of very strange OCD or Tourette's-ish symptoms, I have one where I sort of get "caught up" on things I pass, such as lamp-posts, and have to twitch and tense myself up to "free" myself before I can go any further. (No, there's no rhyme or reason to it at all). Well, whenever that one flares up I notice that I get really tired and out of breath when I walk even quite a short distance. I get the impression it's because of walking on tensed-up muscles or something like that, but I can't be sure. Does anyone else notice this?

    Actually, this hasn't been a problem at all the last day or so. The tic hasn't been as bad either, but it's there, and I've been for a longish walk without getting tired at all. I put it down to having started doing Yoga every morning again, though again that's just my opinion.

    Wombat140

     

    Sounds kind of like OCD. X happens --> I have to do Y.

     

    OCD and tics can be related. I read a paper somewhere called "tourettic OCD." Perhaps OCD can trigger the urge to tic.

  14. phone call with Neurologist in PA this morning

    in Tourette Syndrome and Tics

    Posted

    I've been on Clonidine for a bit over a year now and it has made a big difference for me.

     

    If you're going to try it, start with a LOW DOSAGE.

     

    One pill is 0.1mg. That's what they will probably try to start you at. I take 1/4 of that (I have to break the pill into quarters), and I weigh around 160 or so. I know some younger (and lighter weight) kids are on bigger doses, but there's no reason to start with a heavy dose. The doctor wanted to start me on a pill nightly, but I decided I was going to take 1/2 instead, but even that made me super tired throughout the day, and super dizzy every time I stood up, so I cut it down again to 1/4 pill, which still has all the benefits without the sleep side effects (in my case).

     

    So right now I'm on 1/4 pill, which is 0.025mg. Don't get confused with the extra zero in there :lol: You don't want 0.25mg... that would be 2 and a half pills!

     

    Start low. I noticed an effect within a few days, but if you're on like 1/4 pill and don't notice anything after a few weeks, then maybe bump it up to half a pill.

     

    Or try Tenex, which is supposedly the same thing without the sleepy side effects.

     

    I know I wrote this whole post talking about "you" when it's actually your child. Sorry, I'm tired (but it has nothing to do with Clonidine this time!).

  16. Flonase

    in Tourette Syndrome and Tics

    Posted

    I had a thought this morning.

     

    I remember people talking about how steroids exacerbate tics. Someone said their husband(?) had a shot of prednisone years ago and hadn't ever recovered from the flareup in tics.

     

    And I was thinking... my tics started when I was 17, about the time I was going to the allergy doctor. He was giving me allergy shots on a weekly basis (which I think I researched and they do not contain mercury, but I just remembered, he also gave me FLONASE.

     

    I checked and it is a corticosteroid.

     

    I remember I enjoyed using it cuz it cleared out my nasal congestion.

     

    Discuss the feasibility of a corticosteroid such as Flonase inducing tics in someone who previously did not have them.

     

    Are there any documented cases of corticosteroids inducing tics in someone who was genetically predisposed?

     

    If I could go back in time I would tell myself not to ever go to the allergy doctor.

     

     

     

    (It also sucks about the steroids because I was planning on using HRT as I got older to retain my youthful strength and energy, but not if an increase in tics is the side effect. Maybe in the next 20 years they will cure tic disorders and then it won't be an issue :D )

  17. Is Fluoride Safe for kids with tics?

    in Tourette Syndrome and Tics

    Posted

    o rly?

     

    I live in an area with fluorinated water, and I use mouthwash with fluoride in it every night (Act brand). On that note, I've heard that Act is the only brand of mouthwash worth using because it's the only one that has fluoride in it. Listerine and all those just have alcohol and glycerine or something in them to make your mouth *feel* clean, but they don't actually really do anything for your teeth. However, that could be propaganda.

     

    I'm not sure if there's fluoride in my toothpaste or not.

     

    Guess I should go read that link Chemar posted.

  19. Guy with tourettes on American Idol tonight

    in Tourette Syndrome and Tics

    Posted

    Why does it skip a generation, why does an uncle have it but not the parents?

    why does no one have it and then just this one person?

    Why does it go away for some?

    Why does it go away and come back?

    Why does it get better and worse(wax wane)?

    If someone went to a doc and said this rash only happes on tuesdays they would say...well what do you do, eat, go etc on monday or tuesday?

    If this only happens when i eat pizza they would look at what is in pizza?

     

    This is why genetic research and the progression of medical technology should be at the top of society's priority list. What could be more valuable than extending and improving human life?

     

    Of course, people don't want to do that because they'd rather sit around being stupid all day. :)

     

    edit - I can't believe I held my tongue in this post and didn't launch into a political tirade sprinkled with misanthropy and cynicism!!! :D :D :D

  20. Guy with tourettes on American Idol tonight

    in Tourette Syndrome and Tics

    Posted

    I think it was staged. They wanted to point out that he had tourettes so they had them ask him if he had it. I'm sure it was talked about to him before the judges even met with him. Just my opinion. It definitely could have been done in a more polite way though...

     

    I bet you're right. Almost everything on TV, even reality TV, is staged.

     

    Still tho, exposure to TS isn't a bad thing.

  21. Guy with tourettes on American Idol tonight

    in Tourette Syndrome and Tics

    Posted

    I missed the actual show but saw the clip on YouTube. Personally, I did not really care for the way NPH spoke to Dave Pittman. To me,he was unnecessarily pointing out the tics and the way he basically seemed surprised that someone with TS would not only be there, but be there doing very well, I might add! Maybe I'm just defensive? Idk... Nonetheless, I'm super proud of Dave and I hope he makes it!!

     

    No, I agree with you. Saying "elephant in the room... do you have Tourettes?" or whatever he said wasn't the most polite way to approach the subject. That being said, it's not like it's terribly common so maybe he didn't know how to approach it.

     

    I mean... there's only two other possibilities:

     

    1) The person who has TS announces it beforehand.

     

    2) Everyone ignores it (awkward for everyone, because then the person with TS is wondering "do they notice? Do they notice? Am I ticcing a lot? Is it distracting them?" and the other people are wondering "what is going on? Should I say anything? Why does he keep doing that? Does he know he's doing that? That's weird." and can't focus on whatever the person with TS is doing and/or talking about)

     

    So I still agree with you. "Do you have Tourettes?" is weird, but... how else was he supposed to ask it? I guess it's better than saying "why do you keep doing [insert tic] all the time?" Or maybe it's not, as at least that question could yield an answer of "oh, I have Tourettes."

  22. Husband with Tourettes

    in Tourette Syndrome and Tics

    Posted

    How do they diagnose the difference between TS and TD?

     

    TD has its own set of symptoms and is only caused by using neuroleptic (antipsychotic) drugs (such as Haldol) or atypical-neuroleptic (atypical anti-psychotic) drugs (such as Abilify).

     

    There's a lot more drugs in each of those classes, though. It's not just Haldol and Abilify.

     

    Here's more info:

    http://en.wikipedia.org/wiki/Tardive_dyskinesia

     

    Some people say it can only occur after long term use of those medications, but other studies say that it can happen even after short term.

  23. Need advice

    in Tourette Syndrome and Tics

    Posted

    I had my immunologist give me the strep test because I asked for it.

     

    He's a super cool guy. The conversation went like this:

     

    Immunologist: So I'm going to give you these 8 blood tests (checking for something totally unrelated)

    Me: Hey, while you're sending me over to the lab, do you mind adding this strep/antibodies/titers (forgot the name of it) test onto the list? In rare cases it can cause tics, etc. etc.

    Immunologist: Well, a lot of people read horrible medical advice on the internet and I don't think that strep is what caused your tics, but I will include it if you want.

    Me: Cool, thanks. I figure as long as I'm getting blood taken, what's one more test :lol:

    Immunologist: :)

     

    Of course it came back negative, but whatever.

     

    Cliffs Notes:

    - Your doctor sucks. Find a new one.

    - Seriously. Be your own advocate. If a doctor is ever rude to me, or isn't "listening" to me, I find a new one. This isn't communist Russia where you are only allowed to see one party-appointed doctor. Doctors make mistakes, and some of them don't believe in stuff just because it's "new." Remember back in the day everyone thought shock therapy was the way to treat depression.

  24. Husband with Tourettes

    in Tourette Syndrome and Tics

    Posted

    Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared!

     

    My (personal) general rule is you want to avoid anything that can cause Tardive Dyskinesia (which includes Abilify). Other people may not follow that rule. However, TD is essentially like another form of TS, so it sure would suck to have TS and then get TD on top of it. There is no cure for TD. Sometimes if they detect it early enough and you stop the drug it will go away, but sometimes not.

     

    I guess if the tics were like extremely bad then I might consider an atypical-neuroleptic (one of the classes of drugs that cause TD), but only if I had tried Clonidine, Tenex, Topamax and marijuana first and they didn't work.

     

    Oh wait, and I believe there is a class of drug called "calcium antagonists" that sometimes also work on tics but don't cause TD. They have other potentially bad side effects, like cardiac arrest or something... but hey, the neuroleptics can cause TD and sudden death so I think I'd take my chances with cardiac failure over TD and sudden death.

  25. Guy with tourettes on American Idol tonight

    in Tourette Syndrome and Tics

    Posted

    this is just my thoughts on that....

    for some people, the tics are minor and alot of people are oblivious-as i have mentioned and don't notice what are obvious tics to me.

    And that is why I say that all Ts is trggered by some illness just that most people wouldn't note the correlation between the illness and the onset.(THe doc's don't know what causes it, i know its considered genetic for some but geneticcally predisposed maybe....you need the trigger....that is what i'm saying, since the doc's wont)( i think everyone here is pandas/pitands that includes celicas and any trigger) So then its not your brain, and its your immune system and takes it out of there is something wrong with your brain in that sense, and that lifts the stigma.

    Now, people will go..."oh you have TS"

    and just because they will now notice you have something going on (which they may not have noticed before) doesn't mean they'll accept it, now you've got something that science doesn't understands or can fix!

    Now, is that something as an individual i want to associate with or get invovled with or marry and have kids with if no one can FIX IT!

    I know it's said to be genetic, but the earth was flat, and up until this year, they thought the universe was contracting but now realize it's still expanding.(put that money into ts and other realated reseach)

    Chemar i know you tried to show me it can be genetic but i must not be smart enough to see it, i want to see its gene # pi52rs.....i want something like a gene they show for downs or other things that have a specific gene......then i'll buy it, then ill have everyone genecticallly tested so my kids wont have to go through this with their kids, then they can spin the vile so this can stop,

     

    "Researchers studying Tourette's syndrome in Germany compared 98 patients with 178 healthy controls. They found an association between the syndrome and the SNP rs4565946 in the gene TPH2. People with two copies of the C version of the SNP had over two times the odds of having Tourette's syndrome compared to those with one C or none."

     

    Source: https://www.23andme.com/health/Tourettes-Syndrome/

     

    Anyway, that is why we are all here....because except for the few, and those who have found an answerr outside the box, The "doctors" don't know!!!! and it can be debilitating and very socially ostrizing

     

    This is not faith's reply, just my feeling of wanting to slip under the radar.

     

    Now if there is something about yourself that you can hide or fix, your life is much easier.

     

    I'll tell you,,,,a couple of days ago i was trying to play a game with my boy and he was just adjusting everything....i had to stop because i couldn't take the distraction...i can't imagine how he feels, or how someone can be aournd him when he is at his peek(and i love him)......sooooo distracting....so when his tics go away, i feel like if he can find a good woman, that they should not have kids.....and even though there are not word for the love i have for my kids....if i had known that it is genetic and he would have to go through this,i wouldn't have had kids.....i guess because i do love them so much

     

     

    Ps...2 other shows...one based in Miami one of the guys had a tic and they would cut away, and on the last dancing with the stars...the blonde star dancer, well her fiance had a tic, i noticed they cut away on him too.....its too much for the human senses....people want to be happy and not see others afflictions

     

    Sorry to if i upset anyone.

     

    I kind of agree with what I think you're saying. People don't want to see it. It's why I take medication for mine. It makes life easier and makes dealing with other people easier. Even if they accept it, you're still "that guy with the tic" so you're instantly put in another class from everyone else. People do this unconsciously... even the most open-minded, accepting people in the world still do it subconsciously. It's a survival trait that is implanted in our brains, much like how stereotyping and prejudging are actually survival traits from back in the day when cavemen were trying to not be eaten by wild animals or killed by rival cavemen. The thing is, no one wants to admit that because it's not PC to do so. It's like when people say "oh, no way, I'm not prejudice!" Well, actually, yes you are, unless your brain is malfunctioning.

     

    But anyway, if this guy does well on American Idol, he doesn't seem to be embarrassed or care much about his tic, so maybe it will shed some public light on tics and raise awareness so that people don't just consider TS to be "that disease where you swear really loudly." Public awareness may lead to some sort of research and cure. For example, all the girls fall in love with this guy (as they usually do for the "cute" guy on American Idol) and then they all feel bad for him cuz he's got TS so the gears of the media get into motion cuz "hey, let's cure this guy!" and then some new non-neuroleptic drug gets developed that permanently suppresses tics for life with no side effects!

     

    Or not.

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