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Posts posted by guy123

  1. Brink


    I was just wondering what dose of Clonodine your child was on? You said it made him like a zombie,

    was the dose too high, could you have lowered the dose? That's what we did with our sons and it worked

    quite well afterwards.


    Good point. For the record I am a 160-170lbs male and I take 0.05mg, which is 1/2 of the smallest pill available.


    For a little kid I suspect half of that, or less (if you want to break the pill into 1/8s... ) may work.


    I did have drowsiness as a side effect but it has subsided for the most part. I still get dizzy when I stand up too fast.


    edit - not trying to tell you what to do, just saying.


    Also sorry you had a bad experience with your neuro. Mine is about the coolest doctor I've ever been to. If you're in the Chicago burbs I can give you a recommendation.

  2. Well you could be right, it could be a coincidence, but... my son was not sick at all before the soda and he is not one to get sick easily. In fact I cannot remember the last time he vomited- it had to be at least 18 months- 2 years ago.


    I think of course in most children it would not cause this kind of reaction, but given that my ds has been on a strict diet for 1 1/2 years, his system may be more sensitive to HFCS etc.




    Your last point is good. I've heard that with some foods, abstaining from them for a long period of time can cause intolerance when they are reintroduced. I've heard this is especially true with milk.


    I remember for a few years I stopped eating red meat (chicken and fish and pork and everything else was fine, tho), and when I finally went back to it, I had a double cheeseburger and ended up falling asleep for 2 hours immediately afterward. I guess my stomach wasn't used to digesting red meat.

  3. ok I'm annoyed, this forum's software allowed me to type in a long thread title that was longer than what it actually displays. I came back in to edit it but there's no way to edit the title. Ugh.


    Anyway, the full title was:


    "So you know how most people report a drastic reduction or complete cessation of tics during sex?"




    They should figure out what is going on chemically during this time and make a pill that causes that same mechanism to occur. The result should be drastic/complete cessation of tics.


    I wonder if that could be done without the person being h0rny as a result? (sorry I had to spell it with a zero because otherwise it gets replaced by # signs)


    Or if doing so would eventually fry the CNS...



    Time for more research!

  4. I've been debating whether or not to get a flu shot this year.


    I never noticed it made my tic worse, but I sure do seem to always get a bad sore throat within 0-30 days of getting one (3 years ago I got a sore throat that night that lasted for over 2 weeks... of course my sore throats ALWAYS last forever and are so painful I have to take codiene and/or vicodin just to be able to talk/swallow).

  5. Here's a video of a Brazilian Jujitsu (martial art) instructor demonstrating a technique. He has TS and has a blinking tic.


    This is what mine looks like (mine isn't quite as frequent as his), but it's that hard scrunch-your-eyebrows-down blink.


    Just want to clarify that this is what you all mean by "blinking tic" and you're not talking about that rapid flutter "butterfly kiss" blink like some people have.


    Just click on this, it will play:







    btw I just realized I made 4 new thread in the last hour. sorry... lol :wub:

  6. After reading lots of positive studies and having my doctor tell me it works, I decided to give it a try.


    I should start by saying that at this point I had been on daily Clonidine for 3-4 weeks, and seeing decent results.


    I procured a small bag of marijuana. Some of it was brown, but most was green buds. Most people know green buds are good... "if it's brown, turn it down," etc. I decided to start with the brown stuff and "work my way up," since I'm not a habitual user. It's like how in college you drink the cheap vodka, and then when you're older and making money you can buy Grey Goose and you appreciate how good it is. Anyway, the first night I smoked some of the "lesser quality" stuff, and was feeling relaxed, music was enhanced, etc. I remember having the thought at one point "wow... no urge to blink...".


    The second night I smoked more of the brown stuff. I wasn't smoking too much... probably 4-6 hits from a small pipe over the course of 2 or 3 hours. Again I felt the same as before, but I had a slight feeling like obsessive thoughts were occurring. I know that anxiety is a side effect of marijuana, so I figured it was maybe just that.


    I took the next day off. Eyes still feeling good.


    At this point, I was out of the brown so I put one of the green buds in my pipe and took a bit drag.


    About 10 minutes later I didn't feel right. I felt like I was having a "bad trip." My heart was racing (increased heart rate is normal with marijuana), but this was different. I didn't feel good. Instead of being mellowed out, I was anxious as ######. I felt like I had to be doing SOMETHING. I wanted to go to the gym. This was seriously not cool. I also noticed a large increase in my tic. I literally had to blink hard every 5 seconds. it was like as bad as it was if not worse than before I started Clonidine.


    In all honesty, because of the sudden increase in energy and the increase in ticcing, I thought for a sec "holy crap, what if this was laced with crack" since cocaine is notorious for increasing tics in people due to its dopamine activity. I searched the web and the consensus was that if your pot has crack in it, you lips/mouth go numb right after you smoke it. That didn't happen, so I figured it wasn't the case. (the only other drug that could really have that effect would be meth, and because I definitely wasn't craving more, I knew it wasn't meth, lol... plus I got it from a reputable source so I'm sure it was pure).


    Also worth noting is that my tic doesn't seem to get worse in the case of anxiety/stress (something that seems to be common with TS patients). It's just always there. Never waxing, never waning, just always there. Blink. Blink. Blink. Therefore, I don't believe that the increase in tic frequency after smoking was due to increased anxiety.


    More research turns out that there are two strains of marijuana, sativa and indica. Generally speaking, sativa gives you what people refer to as an "energetic high," and indica gives you the "stoned" high. Perhaps I just got some really powerful sativa, and that's why I was feeling super pumped up. But that wouldn't explain the increase in tics. I read on a site that marijuana has no effect on dopamine.


    Anyway, it's been a few days and my ticcing is still much worse than it was before I smoked the strong stuff. I'm actually a bit worried, but I don't think marijuana can have permanent neurological effects (ok, maybe if you smoke every day for years). I even read a study about someone with TS or Chronic Tic Disorder who used cocaine in a clinical setting and his tics returned to baseline after it wore off. At any rate, this is really not cool and the last few days have sucked. I'm still taking Clonidine, tho. And drinking alcohol, because that seems to help (a tiny bit).


    I also read something on a marijuana site about a guy who (paraphrasing) "came off of haldol and completely controls his Tourettes by smoking indica strain marijuana." That was interesting.


    So that made me wonder about all of the many studies (and forum posts) I've read about with people who smoke marijuana daily to control their tourettes. I think every medical study I've read relating marijuana and/or marinol to TS and tic disorders has been extremely positive, and in many cases it's mentioned that the effects continue to improve over time (altho they also mention rebound exacerbation when you stop). I wonder if they were using indica.


    I found two posts (I think one was here) of TS patients who said marijuana made their symptoms much worse. I wonder if they were smoking sativa?


    I wonder what strain marinol is made from. I don't suppose anyone knows? Or if you get medical marijuana from one of those clubs in California, do they have different strains you can pick from?


    Anyway, just thought I'd share my experience.


    As a side note, if it turns out I can't smoke marijuana, I'll be pretty disappointed. I'm a musician (played guitar since I was in 5th grade), and listening to music on marijuana is one of the most beautiful things I have experienced. But more importantly, I was really looking forward to it as a viable treatment option, and I will be upset if it's not effective for me because that leaves just Topamax, Tennex (which is basically the same as what I'm on now), and the neuroleptics which I don't want.


    Oh, I think I'm going to tell my doctor about this experience (how some weed had a good effect but others had a bad effect) and then use that as a basis for asking him for marinol, since he even admits that marijuana helps tic disorders.


    Geez how did I turn this into such a long post? Thanks for reading.

  7. (both of these theories assume dopamine issues are the cause of tics)



    1. I remember before my tic started when I was 17, I went through a pretty rough 3-4 month period depression. Is it possible that I was so depressed that it altered the serotonin in my brain and that physically changed the dopamine receptors and/or production thus causing the onset of my tic?


    2. (this one is even more of a stretch). I was a SUPER happy child. I look back on my childhood with longing sentiment because I remember every day being fun. When I was in middle school/high school (and full of teenage angst), my parents told me that I "was such a happy child" and I "always used to smile." Do you think maybe I had extra high dopamine levels as a kid (therefore making me super happy) that it burned out my dopamine receptors by the time I was 17 thus manifesting in tics? Or maybe production was fine but there was an issue with reuptake and so I had too much dopamine floating around in my brain and so that is what burned out the receptors? (I'm pretty sure that's not possible due to the fact that neither dopamine agonists nor dopamine reuptake inhibitors have euphoria as a side effect... but you kinda gotta wonder, right, as both of those classes of medication an increase tics or bring about tics in people who have that potential. Or looking at it another way, people with tic disorders should never use cocaine)



    First one... I'm about 75% serious in wondering that.


    Second one... I asked my mom that as a joke and she laughed. Still tho I'm kind of curious.



    Will a PET scan check all that stuff? Like to see if you have too much or too little of something, and how your production/reuptake is functioning?

  8. When my son first started exhibiting symptoms, I printed off PANDAS info and took it to our pediatrician (not the dr recomending the homepathic remedies for strep) and he questioned whether or not PANDAS even existed. He did do a rapid strep test, which came back negative.


    For PANDAS I think I read on this site that you're supposed to do the 72 hour test if the rapid test comes back negative.

  9. Just came across this. I thought this was pretty cool.


    Imaging studies


    As of 2004, imaging studies were not routinely performed on children or adolescents with tics unless the doctor suspects a brain injury, infection, or structural abnormality. Magnetic resonance imaging (MRIs), PET scans, and single-photon emission computed tomography (SPECT) scans have been used by researchers, however, to study the brains of patients diagnosed with Tourette syndrome.


    In the summer of 2004, two engineers in Taiwan reported on the development of a computerized diagnostic system that will allow radiologists to use SPECT imaging to distinguish between chronic tic disorder and Tourette syndrome with a much higher degree of accuracy. The system appears to be potentially useful in speeding up the process of diagnosis and allowing earlier treatment of TS.


    Anyone have any experience with SPECT?


    Sure would be cool to be able to scan and say "you DON'T (or do) have TS."



    source: http://www.encyclopedia.com/doc/1G2-3447200574.html

  10. Do you know what triggers your symptoms? Is it strep? It would seem odd if it did because most kids outgrow that around 13. Did you have a recent vaccination? Some young adults react strongly to vaccines and start having PANDA like symptoms.


    My symptoms are always there. They don't really wax and wane. Well, they wax and wane, but it's over periods measured in minutes, not weeks/months like most tic accounts I've read about. No vaccinations around the time my symptoms started, but there were three things that may have caused it:


    - I had just gotten over mono (combined with a hellish sore throat, which I assume was from my swollen glands in my neck... the size of golfballs)

    - I had just started allergy shots (never finished treatment because my tic started)

    - There was a scandal about my high school being filled with toxic mold and lots of teachers/students were getting very sick.


    But my tic just appeared out of the blue one morning. I'd say there was a spike in OCD around that time, too. I've always been a little OCD, but it got bad around that time.

  11. I wonder if there is anything to be learned by differentiating those who tic more when viral and those who tic less. My son was "inspired to tic" by a vaccine. After the initial explosion, he now only has mild tics when becoming ill.


    I have read many others say that tics stop in their tracks when ill. I guess it could still be immune modulated, but we could at least observe under-responsive systems vs. over-responsive systems.


    Guy, have you noticed any reaction to colds or flu? More or less?


    You know, I haven't really noticed any change.


    The one time I was aware of it was when I got a horrible stomach flu and ended up in the hospital. My tic was diminished initially, but I think it's because my body was in complete shock (I lost 14 pounds in 2 days and was in so much pain I could barely breathe). But the next day when I was laying in the hospital bed, I noticed I was blinking.


    I haven't noticed any reduction or increase when I get a cold or whatever.

  12. Basically he told me he believes there is an adult variant of PANDAS is doing a study on adults who had acute onset of tics/anxiety. I asked if I could be in it and he said I was too old (I'm 27).


    I asked if he could help me or point me in the right direction to get some more info and he ignored it.


    I asked if he had any recommendations for doctors in the Chicagoland area who could help me diagnose or rule out PANDAS and he said no.


    What kind of doctor can't help you and can't recommend anyone else who may be able to? Or even recommend a study or something? Seriously.


    I was kinda surprised since everyone on this forum seems to love him.


    Anyway, anyone here have any good Chicago recommendations? My current neurologist is awesome but doesn't even know what PANDAS is (I guess that's better than dismissing it as "not real" tho, right?).

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