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Everything posted by guy123

  1. Right I understand that, but I'm asking why in one case (PANDAS) it reduces tics and in the other case (TS) it exacerbates them. edit - I didn't see your second reply before I posted my reply. Nevermind. When your husband had his steroid burst (prednisone?) did his tics ever return to baseline? If so, how long did it take?
  2. Can someone help me understand why? I've heard that one of the tests for PANDAS is to to be given a "steroid burst" and if symptoms reduce, that's a good indication it's PANDAS. But people say that steroids (whether anabolic or corticosteroids given for inflammation) make non-PANDAS tics worse. Why does the same treatment have opposite effects?
  3. For what it's worth, one time I took a GNC Mega Men multivitamin (which could definitely be considered a "super" multi-vitamin) and about an hour later my tic started going crazy. Not sure if that was coincidence or not, and I'm not sure what ingredient in the vitamin caused it to happen if it was the cause. I tend to just take B Vitamins now. And avoid caffeine. edit - looks like I made a thread about when I took the mega vitamin: http://www.latitudes.org/forums/index.php?showtopic=4327&st=0&p=29527
  4. There was a study or something where they were using drugs that increase dopamine (which usually makes tics worse) in an attempt to get the brain to adapt by decreasing its sensitivity or responsiveness or something with the idea that over time, the tics would actually decrease as the brain reestablished its concept of "normal"... or something along those lines. Or maybe when the user came off the drugs, then the tics would reduce. Of course, I think the brain would eventually go back to its old levels, so I'm wondering how this study ended up. Does anyone remember the name of the doctor or the study or have the results? I remember reading about it a year or two ago and now I'm curious what ended up happening with it.
  5. I just meant Clonidine for most people tends to have the fewest, and least offensive side effects, of the medications listed. And by that, I basically just mean that it doesn't mess with the QT interval (sudden death) or cause tardive dyskinesia. And I recommend starting with a very low dose and working up. I started with half a pill and couldn't even stay awake throughout the day. I don't know how some people can take 2 or more pills per day. Did your husband try Tenex (another alpha blocker like Clonidine) or Topamax? Unfortunately, other than those, pretty much every drug either makes things worse or has terrible side effects. The one exception may be calcium antagonists, but even they can have some bad side effects, and I don't know anyone who has used them so my info only comes from research.
  6. If you want to try natural remedies, try magnesium and B vitamins. If you want to go the prescription route, Clonidine or Tenex are the safest choices (meaning least side effects). After that is probably Topamax (an anticonvulsant). Marinol (synthetic pill form of cannibis) is also reported to be very effective but is extremely difficult to get a doctor to prescribe. Smoking indica strains of marijuana seems to help some people. Sativa strains of marijuana tend to make tics worse. After that, pretty much every anti-tic drug has potentially horrible side effects ranging from tardive dyskinesia to instant death. You can find a comprehensive list of medications used to treat tourettes on this website: http://www.tourettestreatment.com/list-of-treatments.php Please note that many of the medications listed there are reported to make tics worse, and are noted as such. That site lists all medications that have been tested on tourettes/tics and their effects, whether good or bad. He may also notice that some foods may tend to temporarily make tics worse. This can be anything and seems to vary from person to person.
  7. Guanfacine is Tenex. I am on Clonidine (0.025mg per night) which has made a noticeable improvement in my tic. Clonidine is very similar to Tenex (both alpha blocker blood pressure medications).
  8. My website should be in this thread: http://tourettestreatment.com/ Specifically this page: http://www.tourettestreatment.com/list-of-treatments.php
  9. Looks like the title was too long. It was supposed to say "...that show "DRs" or "Doctors" or whatever it's called". Cliffs Notes: - This teenager had Tourettes so bad that his whole body would convulse all day. He gave himself black eyes, would bite through his cheek, had to wear a neck brace because he had a whiplash type tic, etc. He said he'd be in pain from muscular contractions from ticcing so hard all day. - He got a procedure done where they implant something into part of your brain and you get the battery pack in your torso (kind of like that one Parkinson's treatment) and now he's much better, although he still tics sometimes. It didn't mention if he was on any other treatment or anything.
  10. Ooh, will keep that in mind. Any citric acid? So even eating an orange? I'm not sure what sodium benzoate is.
  11. lol, right? Seriously, if it works, I'll ask my doctor for quinine pills (or whatever form in which they come).
  12. On the front of the label: TONIC WATER: CONTAINS QUININE On the back of the label: Carbonated water High fructose corn syrup and/or sugar Citric acid Natural flavors sodium benzoate (preservative) Quinine Bottled under the authority of dr pepper/seven up, inc (oh wait that's not an ingredient, lol) It said on the wiki page that there's not much in tonic water, not even a medical dose I don't think. But we will see. If quinine works, you can get it in pills or injections or something. They treat some other condition with it. They come in glass bottles. Don't drop them! ;p Guy, if I were you I would not touch that stuff!!!! HFCS needs no further explanation...it is a poison! citric acid and sodium benzoate are chemically derived and can upset the GIT badly plus my son has found both are tic triggers for him natural flavors usually means they are hiding the fact that they have MSG or some other nasty in there I'll still give it a try. HFCS and MSG don't seem to have any effect on my tics so I'm not too worried.
  13. On the front of the label: TONIC WATER: CONTAINS QUININE On the back of the label: Carbonated water High fructose corn syrup and/or sugar Citric acid Natural flavors sodium benzoate (preservative) Quinine Bottled under the authority of dr pepper/seven up, inc (oh wait that's not an ingredient, lol) It said on the wiki page that there's not much in tonic water, not even a medical dose I don't think. But we will see. If quinine works, you can get it in pills or injections or something. They treat some other condition with it. They come in glass bottles. Don't drop them!
  14. Well, I bought a 6 pack of tonic water today (it's more expensive than I thought it would be!) and I will test this out next week. I'd do it now but I've got a cold (strangely enough my tic seems to have reduced, altho it could be cuz I'm eating less), and I don't want any external factors such as being sick or cold medication interfering with my tonic water experiment. Questions: - Does anyone know how much tonic water (quinine) was supposed to have an effect? I got these little 8 or 10 ounce bottles or something. I hope it's not much. Tonic water is gross. Which brings me to my next question: - Anything I can put in it to make it taste better? I don't like vodka tonics, I think gin is awful (gin and tonics are like mixing two of the worst-tasting drinks around). Can I mix it with juice or anything that will make it easier to drink without messing up the effects of the quinine? For the sake of this experiment I would like to not involve alcohol Maybe if it works I can mix it with pomegranate juice and make a super anti-tic drink (also a super expensive drink!). lol. edit - I was just reading about it on wikipedia, and I found this pic. This is the brand I bought (it was the cheapest of them all). Under normal light and UV:
  15. Cool. I would get that done just because I'm a geek and would be interested in the process and the results. Thanks for the link
  16. On that note, I've tried muscle relaxers (methocarbomal) for my tic and it had no effect. However it is my understanding that methocarbomal isn't terribly powerful and may act on some other mechanism than other muscle relaxers. I don't know much about that drug class.
  17. Interesting. Marijuana (a powerful anti-inflammatory) is also beneficial for Crohn's Disease and tics (depending on the strain of marijuana). Of course, I wouldn't recommend that for your son until he's 18 or under the guidance of a knowledgeable (non-propaganda "pot is evil") doctor. But hypothetically, it's nice to know that a drug with no serious side effects is beneficial for both conditions which affect him. I'd much rather deal with weed's side effects than some neuroleptic and expensive immune suppressing Chron's drug. Any other anti-inflammatory foods you would recommend? Have you tried pomegranate?
  18. Are you talking about a PET scan or something else?
  19. Now you've piqued my interest, as pomegranate is supposed to be anti-inflammatory as well and I swear that eating pomegranate or drinking pomegranate juice (even tho it's expensive) temporarily reduces my tic.
  20. Yeah, but let's not forget that for most people, simply going to the doctor's office will temporarily suppress tics. Mine lessen by about 90% when I go to the doctor or the dentist (I like it, and I jokingly tell my doctor that our visit can last as long as he wants because I enjoy the relief from the reduction in tics, lol. I also brought a video of myself ticcing once so the doctor could see what actually goes on when I'm not in the office), and from everything I've heard and read, so do most other people's. I've heard it annoys parents whose kids have TS but the symptoms all disappear when they go to the doctor. So, by saying there's no fee if tics are suppressed during the visit... well they probably get suppressed regardless during the visit anyway. Not saying this stuff doesn't work, because I have no idea. I'm just saying.
  21. Quinine is in tonic water, right? Oh man, tonic water is so gross (IMO). When I was in college and I used to go to the bars, I would get a vodka + Sprite and a lime. It was good. So one day, someone recommended that I try a vodka tonic. I remember thinking that it tasted rotten, like maybe the vodka had gone bad (I thought that "tonic water" was just another word for "carbonated water"). Then I tried tonic water alone. GROSS. But still, I'd drink it if it would reduce my blinking tic! Heck, I would drink some of that nasty liquid every day if it helped. Maybe I'll buy a bottle of it next time I go to the store and report back.
  22. My blinking tic sometimes gets worse toward the night, although it could just be the previous dose of Clonidine wearing off. I take it at 10pm every night before bed, so it stands to reason that around 10pm the previous dose would be wearing off. I've noticed that sometimes movies (in the theater) make it worse, and other times it doesn't make a difference. Although when I saw Avatar in 3D I was too in awe to even notice
  23. FWIW, I now believe that my tic was caused by using Flonase, a corticosteroid, when I was 17, shortly before my tic began. Perhaps I was genetically predisposed to it and the Flonase set me over the threshold. This is terrible news about steroids. I was planning on doing HRT when I got older, but now that's not an option (unless they've cured tics by then!).
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