guy123

Name Levetiracetam Tradename Keppra Method of action "antiepileptic drug with atypical mechanisms of action" Notes "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: http://www.steadyhealth.com/keppra_tourettes_t55836.html Study comparing Keppra vs. Clonidine for tics http://clinicaltrials.gov/ct2/show/NCT00370838 Discussion about a 4 year old who took Keppra for seizures and started to tic http://neurotalk.psychcentral.com/thread26375.html *Here's the study where "all 60 showed improvement" http://www3.interscience.wiley.com/journal...=1&SRETRY=0

what accupuncture points are useful for tics?

Yeah, it was my understanding that you can only indirectly measure dopamine and serotonin. What are the tests called? Are the expensive? I want them (for my nerdy mind). Also norepinephrine.

did i misread your post, or did you get a blood test that measured serotonin and dopamine? i didnt know that was possible!

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

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

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

From here: http://www.raysahelian.com/tourettessyndrome.html From like two thirds of the way down the page: 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?

Questions: 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? Thanks.

Age when tics started - 17 Current Age - 28 Did your tics reduce or increase as you aged - Exactly the same (occasional reduction now due to Clonidine. I have good and bad days now. Before it was all bad days) How old were you when they reduced if they reduced - n/a

Zyprexa is an atypical-antipsychotic (the new class). Haldol is of the old class. there's a bunch more in each class.

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.

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 Cannibis 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.

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.

What additional expenses does TS cause you to incur besides occasional visits to the neuro and maybe some medication? Is it significant enough that being labeled as "TS" on your insurance will cause your rates to go up? Just curious.

does it have to be B-6 alone or is a B complex satisfactory as well?

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.

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

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 )

I've heard of deodorant/anti-perspirants causing Alzheimer's, (altho I never really put any faith into it because I mostly just heard it from hippies who didn't wear deodorant anyway, lol). Could be.

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.

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

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

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.

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. Do you recall what drugs he was on? Were they for TS? 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.