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guy123

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  1. Very nice info thank you for putting that together. Just a suggestion how about some natural treatments such as supplements etc. Those medication side effects really scare me, some are horrible.

     

    Some of them aren't bad. Clonidine and Tenex don't have too bad of side effects... drowsiness, dizziness, headaches, loss of libido sometimes.

     

    It's the neuroleptics and stuff with the bad sides.

  2. Source: http://www.news-medical.net/?id=43658

     

    Kurlan and his colleagues are studying a drug called Mirapex (pramipexole). The drug is approved by the Food and Drug Administration for use in patients with Parkinson's disease and restless leg syndrome.Mirapex is a dopamine agonist; it stimulates dopamine production in the brain. Small pilot studies with the drug in TS patients have shown good outcomes and few side effects. Mirapex is investigational in patients with Tourette's syndrome.

     

    "It would seem to be counter-intuitive to stimulate more chemical activity in the brain when we know that there already is an imbalance in Tourette's patients," said Kurlan. "However, we believe that this might actually cause the dopamine receptors in the brain to adapt and desensitize so that they start reacting less to the overactive dopamine."

     

    I bolded the important parts, and I understand theoretically how that would work.

     

    My question is, then, when someone comes off the medication, do they experience Parkinsonism? It sounds like after being on the medication for a while, the brain would have adapted to the increased dopamine by desensitizing or downregulating or whatever it does in the presence of too much of something. So it's returned to "baseline" but with more dopamine. Now you remove the medication, suddenly the brain is experiencing "not enough dopamine (relative to "baseline") = Parkinsons.

     

    I wonder what the chances are if I emailed the doctor in that study my question that I would get a reply. I'm gonna try.

  3. Wow,

    What a fantastic resource, all on one page, easy to navigate. You did a great job with this. I will link to it from my blog forum as well. Many folks will get advice from a neuro and will also get a certain brand of drug as a possible script (In our case the doc suggested Topamax.) We opted to go the natural route instead but a site like this would have been great for us to discover at that time. We had a very young child at onset (3 1/2) and were frightened about side effects.

    Thanks a mill for the efforts.

    :D

     

    p.s. a little something about natural treatments would also be nice----

     

    Thanks.

     

    I'm not totally happy with the appearance of the site but I guess it will suffice for now.

     

    I was considering adding sections on tic triggers and natural treatments. The only thing is I haven't seen many (any?) documented studies about natural treatments (obviously, as it's not profitable for pharmaceutical companies). First I have to finish filling in all the empty cells in my charts, however :D

     

    I'm trying to remain neutral and present information, and not say that one treatment is better or worse than another. Hopefully readers will be able to use the info (as well as info on other sites and from their doctors) to decide which treatment is best for them.

  4. I'm posting this cuz I remember seeing a few people mention cipro here before.

     

    This isn't the best designed website in the world, but it's got good information:

     

    http://www.fluoroquinolones.org/

     

    Cliffs Notes:

     

    - Any antibiotic in this class is a permanent toxin

    - everyone's threshold is different, but once you hit your threshold you will begin to experience a host of horrible, permanent problems

     

    A blog by a guy who has had this happen to him:

     

    http://deathbycipro.wordpress.com/in-brief/

  5. To add to it, yesterday I was looking at a med book on prescriptions and one of the occasional side effects of risperdal is EARACHES!

     

     

    From Drugs.com for Risperdal:

     

    EENT

     

    Rhinitis (36%); abnormal vision (7%); pharyngitis (5%); conjunctivitis, otitis media (less than 5%); ear disorder (3%); earache (1%); retinal artery occlusion (postmarketing).

     

    I forgot, have you tried Clonidine yet? You may want to begin with that as it is less harsh of a drug. The main side effects of Clonidine are headache (temporary and goes away), dizziness upon standing, drowsiness, and loss of libido. And if you come off Clonidine, they all go away. Risperdal is an atypical-neuroleptic which is a much riskier class of drug (altho not as risky as regular neuroleptics).

  6. So there's this company, 23andme.com, that will give you a report of your genetics and what diseases you may be susceptible to in the future based on your genetics.

     

    It seems like there are 26 conditions it can give you a confident report of and 76 conditions which it can give a report that is thought to be confident based on known data but not at the highest confidence interval. Anyway, Tardive Dyskinesia is in the second group. Here's a complete list of conditions: https://www.23andme.com/health/all/

     

    And here's the TD Page: https://www.23andme.com/health/pre_tardive_dyskinesia/

     

    It would be cool if one day, before being prescribed neuroleptics, patients were screened for genetic risk of TD and cautioned if they appeared to be susceptible.

     

    edit - I've heard about a billion other reasons NOT to use neuroleptics, but still. I think genetic research is interesting.

  7. Im great at home usually tic free well except a few minor eye blinking and neck stretching, but once i leave the house to go out with friends or go to school im start to tic not crazy harsh ticing but enough to bother me. Why would this be?

     

    Perhaps your tics increase with stress/anxiety and leaving home makes you slightly anxious. At home they don't bother you because you're completely comfortable.

  8. Ok i got a new question, lets say my tics are caused by alergies/stress does that mean there is a chance that MSGs, food dyes, and other types of triggers wont trigger my tics, and by solving my allergy problem and stress problems i would be tic free?

     

    Yes. If x, y,and z trigger your tics but a, b and c don't, then solving the problem (or removing) x, y and z would eliminate your tics.

     

    Or are these MSGs and other stuff just universal tic triggers?

    No, only in some people. Many people aren't affected by MSG (insert Chinese food reference).

     

    Actually, MSG is a chemical that enhances the flavor of meat in food. So if it's not a trigger for you there's not really a problem with eating it (assuming you don't have sodium issues, because it IS high in sodium).

     

    I found this interesting. You know how there are four "tastes", sour, sweet, bitter, and salty? Well Japanese researchers believe there is a fifth, "meaty," which is encountered when you eat things like beef or tomatoes. Anyway, MSG enhances that taste, which is why it's found in things like canned ravioli and ramen and stuff... it makes the food taste better. When American GIs came back from war, they said they liked the Asian troop's rations better than their own because they had MSG in them.

     

    It can also mess with insulin, tho, which is why a lot of people report feeling hungry again shortly after eating Chinese food.

     

    So generally speaking, if your sodium is under control, and you don't have insulin issues, and MSG isn't a tic trigger for you, it's probably not too bad (or everyone in Asia would be super sick).

     

    But it is worth eliminating it for a while to see if it makes a difference. It has many names, the most common of which is "monosodium glutamate."

     

    Hmm very interesting. This is a very tricky situation... By going to the doctor would he/she be able to tell me what the reason for my tics are? Or will it still be a hit or miss

     

    Perhaps a neurologist could order at PET (positron emission tomography) scan which could see if your neurotransmitters are goofed up. That's the only diagnostic tool I've seen for tic disorders. Even so, the recommended course of action probably wouldn't change. You really don't want to use dopamine blockers (neuroleptics) if you can help it because the side-effects are worse than the tics in many cases.

     

    Doctors will often want to try different medications which will be hit or miss. Some people have good results with Clonidine. Others don't. Basically they'll try one and if it doesn't work they'll try another.

     

    Do your research and don't let the doc put you on anything you don't want. I made a 12 page chart of medications and side effects and brought it with me and my doctor was cool and said "we'll only try stuff you are comfortable with" which is why I got a prescription for Clonidine. My neurologist said "I've had good results with Risperdal" and I said "###### no!"

     

    I can send you my document with all the medications grouped by type, mechanism of action, study results and side effects if you are interested.

  9. Also, if i keep up this clean diet and supplement would it be a possibility that i can be cured from my tics?

     

    Only if your tics were directly caused by an allergy to something you were eating, which is probably not the case.

     

    I have noticed with myself that certain foods (fish) make them much worse for a period after I eat, but even if I don't eat fish, or don't eat anything, they don't go away entirely.

     

    or is it once you have chronic tics your stuck with it
    Some people have tics that go away and then come back. Other people have tics that never go away. And other people have tics that eventually go away permanently (altho that usually seems to be children whose tics go away as their brain matures into adulthood).

     

    Tics are typically thought to be caused by chemical imbalances in the brain (I believe the most common theory is a glitch in dopamine receptors that causes them to be "too receptive" or something like that, which is why in some cases, dopamine-blocking (neuroleptic) drugs are effective on tics. But neuroleptics drugs have terrible side effects). So theoretically, the only way to "cure" a tic disorder is to repair the brain (or mask the symptoms with drugs).

     

    As I understand it, there are two theoretical "cures":

     

    1. Electro brain stimulation. There's a news story about some guy whose Tourettes was so bad he couldn't even finish a sentence without ticcing all over the place. He had some experimental operation that either greatly reduced his symptoms or cured him, altho this hasn't been done often and there's no long term studies.

     

    2. Stem cells... possibly... the affected areas of the brain could be "rebuilt" or "repaired." I haven't read too much about stem cell research with Tourettes but this may be feasible.

     

    Also, lets say i just go to a restaurant. How can i see whats in the food i would like to order i mean its not like they bring a label with the food or put a label in the menu.

     

    You can't, really.

  10. Hi All,

    Is ParaGone for Kids, safe for kids to take who have tics? I have been reading a little on wormwood and it says it can affect the central nervous system. But ParaGone is for kids, So I don't know what to think. Does anyone know anything about this product or wormwood? Thanks for any feedback you can give me. Char....

     

    Isn't wormwood the psychoactive agent in Absinthe? If so, it's a permanent neurotoxin (which is why I haven't ever tried absinthe).

  11. My son has one tic - a chronic complex tic. As I read the forum, it appears that most have mulitple tics. Is it common to have just one tic? Also, my son's tic is waiving his hand in front of his face usually while he's looking at a light - either flourescent or natural. The movement appears deliberate as opposed to involuntary. He did go to a neurologist and it was determined it was a tic. Something just doesn't seem right. Any thoughts or ideas to explore? Thank you.

     

    I don't mean this to sound stupid, but are you sure he's not just doing it because it looks cool? Different lights operate at different frequencies and can cause different effects if you wave your hand in front of them. Try it in front of an old CRT computer monitor; it has a strobe light-like effect. LCD monitors don't. It's a similar effect to staring at a ceiling fan (on a low speed) and blinking really fast; it has a strobe light effect.

     

    It could be a tic, but it could also just be that he's discovered a property of different frequencies of light emission and he's messing around with them.

     

    Of course, natural light wouldn't have this effect, so it could be a tic since you said he does it for natural light, too. And the fact that the neurologist diagnosed it as a tic means it probably is.

     

    How often does he do it? Every time he encounters a new light source? Only when he's board? How old is he?

  12. I went to the store to look for some b-12 that was Methyl~ and not Cyano~. It's hard to find the methyl kind! But I finally did, a sublingual tablet that has 16,000% methyl b-12 in it. I've been taking 1/2 tablet daily (I like to start slow and ramp up dosages later).

     

    Seriously tho like 95% of the b vitamins in the store, whether B12 alone or B complex, had cyano rather than methyl. One methyl variation was called "super b12" but it was $30 for a small little bottle. I was like "are you kidding me?" I ended up paying $12 for 60 tablets (ripoff) but it was at Whole Foods so what do you expect (my normal grocery store didn't have any methyl b12).

     

    I also looked for magnesium taurate but they didn't have it, everything was mag oxide. There was ONE magnesium that had a bunch of kinds mixed in, including mag taurate, but I figured it was probably 1% mag taurate just so they could put it on the label.

     

    And speaking of 1%, there was a "Magnesium/potassium" combo pill there, and I looked at the ingredients, and the RDAs were as follows:

     

    Magnesium: 100%

    Potassium: 1%

     

    I was like "lol, really? A supplement with 1% of the RDA for a supplement? Why bother?!" (maybe the potassium interacts with the magnesium or something. I don't know. I just laughed. After seeing all these B vitamins with 10 and 20,000% RDA, it was funny to see something that was 1% RDA)

  13. no, no shedding animals. what is histamine? is that why we have tics? It was really werid today i woke up just fine then as the day went on it got worse and worse i think it might have been my lunch, but after i ate my lunch for about an hour or 2 it was ok then just randomly it hit me got kinda bad then went down when i went to my cousins house. Then we went out to a concert and i dont know why it became bad again my body felt really stressed i dont know why. Then i went to eat and it got better again. HOnestly the tics are so unexpected i have no idea what to think is causing it.

     

    What did you have for lunch?

  14. Oh, and don't forget to give him probiotics daily to help replenish the good bacteria in his gut which he probably needs if his GI tract is upset.

     

    Bonnie

     

    It may be my messed up body chemistry but when I was taking probiotics every day it seems to CAUSE gastrointestinal distress. Now that I've cut back I'm feeling much better.

     

    I wasn't even taking a lot, either; just a single serving of Kefir every morning.

  15. many find that a B complex upset their system

     

    my son gets digestive upset and feels weird with a B complex

     

    so he takes his extra B's separately and also has some in his multi-shake

     

    a good balanced multi source of Bs in Royal Jelly from bees, which my son uses when he needs a B boost

     

    When you say "upset their system" do you mean gastrointestinal distress, or do you mean increasing tics.

     

    Which Bs does he take separately?

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