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Posts posted by guy123

  1. Name






    Method of action

    "antiepileptic drug with atypical mechanisms of action"



    "All 60 patients showed improvement (Awaad, Michon, Minarik)" * (see note below)


    Side effects

    - hair loss

    - pins and needles sensation

    - psychiatric symptoms ranging from irritability to depression

    - headache

    - nausea

    "In children, the most common side effects are sleepiness, accidental injury, hostility, irritability, and weakness."



    Discussion on a TS forum about Keppra:



    Study comparing Keppra vs. Clonidine for tics



    Discussion about a 4 year old who took Keppra for seizures and started to tic



    *Here's the study where "all 60 showed improvement"


  2. Please be very careful about allowing your children to take Risperdal. My son has developed a Tourette's problem as a side effect of taking this drug. My son was 28 when he was put on this drug. He was put on it because the Zoloft, the anti depressant they gave him caused him to have rages, which he had never experienced before. To calm him he was given Risperdal. While on Risperdal he gained about 20 pounds very quickly. After 4 months his was throwing it up and could not tolerate it. We cut it down as slowly as possible due to his reaction we had to stop it. Within 3 weeks, he was twisting his wrists and flipping his hands uncontrollably and muttering "Jesus Christ" over and over. It's taken over a year to stop the hand twisting. Now he has a vocal tic and makes repetitive movements with his arms spontaneously. His doctor at UCLA said he didn't know why he had those symptoms, neither did a neurologist whom we paid $350 for a visit. I called the company that makes Risperdal and they said it could cause those side effects but they had no cure. I am on the look out for alternative medical solutions and feeling very disappointed with our mental health professionals. Ollivia


    I thought Tardive Dyskinesia only involved the face (mouth)?

  3. I assumed Guy was referring to the nystatin as "cure" for TS as "hokey" rather than that physician and much of what is documented there.


    My apologies for not specifying. I was referring to the website as hokey. There was no structure or anything, just a bunch of random info clipped together without sources or verification. That's what I thought was hokey.


    no peanuts, no chocolate, no corn, no wheat, no soy, no dairy, no sugar (except honey), no gluten


    What does that leave? Can you describe a day's worth of sample meals (breakfast, lunch dinner)?

  4. Hey Guy,


    I got off the regimen because i had a root canal which messed things up both times. Than when I got back on, as I am today, I never got the same results. I'll get there - just gotta keep pluggin away. I am taking probiotics, bontech sups, dmg125, theramil forte, natural calm, candida diet, nystatin, glutathione. life plus colon formula.


    Is that the specific supp regimen you were on when you noticed the 50% decrease in tics?

  5. From here:




    From like two thirds of the way down the page:


    Q. My son was cured of Tourette's nearly two years ago. He was severely affected, having motor tics from head to toe, echolalia, screams, barks, throat sounds, squeaks, you name it. He became symptomatic at age 6. He is now 8 1/2. He was treated with nystatin and diet change. We attribute the explosion of symptoms to repeated long term antibiotic use as well as use of steroid medication around the same time. He again became symptomatic during treatment with antibiotics one year later, but symptoms resolved with nystatin treatment entirely. Here is a full report:

    My son is not the only child to be successfully treated this way. Another mom in Canada had a son with Tourette's syndrome who recovered without other meds. Another mom in NY has just started nystatin on her son, as well as diet, and for the first time in years he has gone days at a time with few or no tics. He has only been on treatment for less than one week! Here is my son's full history:


    No clue what the source is for this page. Sounds kinda hokey. It's possible the kid outgrew TS at the same time he happened to start the medicine.


    What is Nystatin and how does it supposedly work on TS?

  6. My tics reduced by 50% - 75% twice over the past 2 years due to supplementation and diet for about a month each time.




    Did you stay on the supplement regimen that caused those changes? If so, I would be interested to know what supps they were and how long it took before your body adapted and they were no longer working. And then if that was the case, if you cycled off of them and then started them back up later, did you notice the same effect again?


    If you stopped taking them, why?



  7. i just read something about Melatonin being used to treat TD.


    Supposedly the neuroleptics like Haldol cause a greater incidence of TD than the "newer" class of atypical neuroleptics.


    Someone mentoned that theyre developing a new neuroleptic that won't cause TD at all but they didnt mention anything other than that.

  8. There are four (five if you could marijuana) meds I have come across in my research that don't have the horrible side effects of all the rest. They are:


    Blood Pressure Meds

    Clonidine - side effects - tiredness, dizziness upon standing, loss of libido, headaches, all of which lessen over time (except loss of libido)

    Tenex - side effects - same as Clonidine but the tiredness isn't as bad


    Anti-convulsant meds

    Topamax - side effects - pins and needle feelings in your fingers, change in taste, weight loss, nausea, upper respritory infection, osteoporosis



    Marijuana - side effects - short term memory loss, euphoria, anxiety, increased appetite

    Marinol (extracted THC) - side effects - increased appetite, eupohria


    Pretty much everything else, especially anything in the neuroleptic class of drugs, has horrible side effects including but not limited to irreversible movement disorders and sudden death.


    I've spent months researching tic treatments and you can find a list of every medicine I've encountered at http://www.tourettestreatment.com Sorry about the ugly colors on the site; I need to change them. Click on "list of treatments."


    I suggest you study (or print out) that list and bring it with you to your neurologist visit. That way if he says something like "I think you should try Haldol" you can look it up on the list and see that the side effects include irreversible movement disorder (Tardive Dyskinesia) and sudden death, and you can say "no, let's try something else first."


    Good luck.

  9. A few things.


    1. How old is this person with TS? Are you talking about yourself or your child? If it's a child, it may very well get significantly better as they approach adulthood as the brain matures and "corrects" itself. Some people even claim to have "outgrown" TS or tics that they had as a child. Now, if the tic started in adulthood, then it is probably permanent (based on what I've read).


    2. Talk to your doctor about cycling off of Tenex and then starting over. If you're on it and then you adapt, you'll need higher and higher doses over time. Well, you can't keep increasing it forever. So discuss decreasing it (slowly, you can't just quit taking it all at once) until you're off of it completely, then wait until you're back to "baseline," and then begin again with a small dose. The beneficial effects *should* come back (theoretically) as you're reintroducing a substance into your body that you've no longer built up a tolerance to.


    3. Stay away from neuroleptics unless your symptoms are so absolutely debilitating that you cannot function. The side effects from neuroleptics can be worse than TS, and in some cases they are permanent.


    4. Support medical research. TS is theoretically curable, or at least better medications can be developed that will mask all symptoms without side effects. They just haven't been invented yet. Remember that medical science, like technology, progresses exponentially. "Medicine" 100 years ago was barbaric compared to today. Computers 20 years ago were terrible compared to today. I imagine that in another 50 years there will be treatments that we can't even begin to imagine today. Stem cell and neuroscience research has the potential to cure diseases that we currently don't even understand. Imagine having TS symptoms be 100% controlled by an injection of nanoprobes which go into the brain and correctly modulate dopamine. Or imagine curing it entirely with a stem cell injection that regrows the defective parts of the basal ganglia. TS gone. It's a million times better than the drugs we use now, some of which permanently change brain function in harmful ways (neuroleptics) that scientists don't even fully understand. Assuming you're talking about a young child in your post, even if he doesn't outgrow TS by adulthood, I imagine that in that time period better treaments will have been developed.


    Oh and check out my site for a list of all the TS medications I have been able to find so far: http://www.tourettestreatment.com It may give you other options and things to discuss with your doctor.

  10. tyrosine stimulates dopamine = increased tics


    I wonder what would happen if you used it for a long time, if your body would downregulate or something because of the increased dopamine, and then when you stopped using it if you would have a decrease in tics below baseline (possibly temporarily until your body readjusted to baseline).


    Not trying it on myself, just saying.

  11. I don't really need the "deodorant" part of it, but I definitely need the antiperspirant. Do they make those without aluminum?


    Despite being really skinny, I sweat a lot, especially after I eat a lot, because of my fast metabolism. Rather than packing on weight like normal people, my metabolism just increases and burns through whatever food I eat, generating heat (lol that rhymed).


    At points I've even been on prescription anti-perspirant (which didn't really help so I stopped using it). In the summers I just stuff my armpits with paper towels folded over a few times (so that it's 8 layers thick) and change them every few hours. This is in addition to strong OTC deodorants (Degree, Mitchum, Certain Dri).


    I'm quite odd... if I don't eat "enough," I will be absolutely freezing. But when I eat a lot, I don't need a jacket when I go outside in the winter. I'm like a reptile, except I regulate by body temperature by eating :D


    edit - before anyone asks, I've had plenty of thyroid tests. All normal.

  12. My son is 8 and started violent neck tic when he was 7. Drugs did not work. We opted for Botox in his neck. Miracle. The tics were gone for 5 months. Then the neck movement started again, so we got him more Botox. In about a week, tics were gone. It is possible to get Botox every 3 months if needed.


    Such a wonderful relief.


    Fascinating to meet someone (online) who has used Botox as a tic treatment.


    I have two questions for you:


    1. Did he ever experience the "unscratchable itch" phenomenon, where he had the desire/sensation to tic but was unable to because of the botox?


    2. Did it affect his "normal" head movement? Like did he lose control of that muscle, or did it just somehow alleviate only the tics (if you say it alleviated only the tics I'm going to have more follow-up questions... just FYI :D )

  13. Could be environmental or mental.


    For example, it could have been something (or lack of something) in the air.


    Or it could also have been an increase or decrease in stress causes a change in neuro chemicals resulting in your tic temporarily going away. Sometimes when I go out in public, like to the store for example, my tic almost completely disappears, and then when I come home it comes back. And sometimes it's the opposite. I haven't quite figured out why yet.

  14. Has anyone with kids having facial tics, seen the tics when the child was sleeping? My son has had several different types of facial tics, during one tic we actually saw it happen during his sleep. The others we did not...thanks for any input..


    As I understand it, ticcing during sleep is quite rare. Are you sure he was asleep and not just in the process of falling asleep?


    Also, random muscle contractions aren't uncommon as one is falling asleep. Ever jerk yourself awake just as you were falling asleep (this is funny when it happens to someone who is sleeping in class :mellow: )?


    Do you see it commonly while he is asleep or just randomly?

  15. guy123,

    Hi, Just wondering how the meds are working for you? Are your tics any better on the meds? Do you see any side effects anymore on the meds? Thanks for posting meds treatments, It's great for people to look at all their options!! Char...




    I'm still on .025mg Clonidine (1/4 of a .1mg pill) per day, taken nightly. My tic is noticeably better the majority of the time, but occasionally I have bad days (equivalent to how it was before I started the medicine).


    I was originally on .05mg (1/2 of a .1mg pill) nightly, but I was having the following side effects:


    - Dizziness upon standing

    - headaches (went away)

    - eye aches (went away after the first week)

    - drowsiness (sort of went away, but not entirely)

    - loss of libido and difficulty getting/maintaining erection


    Mainly because of that last bullet point, I cut the dose down to 1/4 pill. I do feel I had a slight "rebound exacerbation" for a few days as my body adjusted to the lower dose, but the difference in libido and ability was immediate. That was a few months ago, and now I've adapted to being on 1/4 pill. Obviously my tic isn't gone, but it's better than without the medicine, and I don't have any noticeable side effects anymore (occasionally I will get dizzy if I stand up too fast).


    The normal starting dose for Clonidine is .1mg (the whole pill). Since I had such bad side effects on half a pill, I wouldn't want to even try a whole pill!!! I told my doctor that I cut it down to 1/4 because of the side effects and he was cool with that.


    Oh yeah, my blood pressure lower now, too. lol. I never had high blood pressure to begin with, but last time I took it (a few days ago) it was 111/68 or something. Clonidine is a blood pressure pill (that's why you get dizzy if you stand up too fast).


    Re: Chemar's post:


    Sorry your husband and son got the psychotic rage side effect. That seems quite rare. But at least it went away when they stopped the pill (as opposed to some of the neuroleptic side effects that don't go away). Did they ever try Tenex?


    As for me, I plan to stay on Clonidine indefinitely, either until I have to come off for some reason, like adaptation (in which case I plan to stay off it for a while, return to "baseline", and then begin again), a better drug being invented (tic free with no side-effects super pill!) or until some new medical technology can "cure" me (stem cells or nano-technology or something). You know, that might be occurring sooner rather than later. They are making some good stem cell progress, such as Prochymal with Crohn's patients.


    Or maybe I just watch too much Star Trek where a hypospray and little computer band on your forehead can repair brain damage/injury at the cellular level in a matter of seconds :mellow:


    Seriously, tho. Stem cells should be able to knock out Tourettes, Parkinsons, Alzheimers, ALS, and Crohns. Go medical science, go!

  16. those are still had side effects especially if you drive alot what if your on the free way and u get this sudden dizziness


    My point was that dizziness and headache side effects that go away as your body adapts to the medication are a million times better than permanent movement disorder side effects that don't go away even after you stop the medication.


    But yes the drowsiness can suck. One night a few weeks after I started Clonidine I was driving to my gf's place (I hadn't even taken my pill yet that night) and I got a MASSIVE drowsiness attack in the car on the highway. It was pretty scary. But that was before my body adapted. I actually reduced the dosage since then, too, and I don't have drowsiness issues anymore.

  17. My thoughts on this are the same as with most of the drugs used for movement disorders. Good luck to them. Long term, these things just don't seem to work very well. If my understanding of the term "plastic" is correct, the brain has a great ability to change. If this would work, why wouldn't it happen normally? Too much dopamine.... theoretically, the brain should down (regulate) dopamine receptors (or presynaptic release of dopamine) on it's own in the first place, no?


    I've heard that offered as a hypothesis why some people "grow out" of TS as they reach adulthood. The brain is too sensitive to dopamine (or whatever is going on) during youth, and so it "auto-compensates" by making itself less sensitive (or downregulating, or whatever it does) as the brain matures. I believe it was also used to support the idea that TS that persists into adulthood rarely goes away (the brain is already "developed" how it's going to develop, with the dopamine abnormality (or whatever is causing the TS)).


    This is why I wonder if stem cells hold a possible solution. Get some stem cells to regrow/repair the basal ganglia (or whatever part of the brain is affected) correctly, instead of with the TS defect. Problem solved (theoretically). That would be a legit "cure." No more maintenance medication, no more symptom-suppression medication. The brain would now be operating correctly on its own.


    A young friend of mine pops to mind. He was placed on two drugs that worked on blockade of the same receptors. His neuro saw what he was on and asked if the prescribing physician was crazy and made the remark that he would have parkinson's by the time he was 30. Seems the likelyhood of Parkinson's would depend on how many receptors were reduced (or the amount of presynaptic realease possibly increasing the amt of post synaptic receptors), and if they have the ability to return to an altered baseline and "stick" once the med was discontinued, if that's the intention. I suspect that first they are trying to see what happens with continuous use at a certain level, not with the intention of altering pathways then discontinuing drug use.
    Do you recall what drugs he was on? Were they for TS?


    I have to think about TD here too. How is it that long term use of a dopamine antagonist can cause symptoms that are almost indistinguishable from origninal sysmptoms? TD sometimes remits and sometimes it doesn't. Why? Individual levels of brain plasticity makes the most sense to me, and how can that be determined until it's too late? Would luv to hear any of your thoughts on my ramblings Guy!


    Supposedly one of the conditions that www.23andme.com can genetically test a predisposition for is Tardive Dyskinesia. I think such testing should be mandatory before use of neuroleptics, at least so the patient has an idea if they are at significant risk for developing TD.

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