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Everything posted by guy123

  1. I just renewed my prescription and the place that used to carry Actavis no longer carries it and gave me Northstar brand Clonidine instead. I'm going to try it tonight. I'm a bit nervous after how my body reacted to the Mylan brand but I will let you know how it goes.
  2. Interesting to hear that antibiotic use may trigger tics. Fixit, you said Baixin or steroids? What steroids were you on? I've heard of steroids causing or exacerbating tics but never abx.
  3. If you developed it at 9 and were mostly "cured" by 13, how do you know it didn't just go away on its own? It's pretty common for childhood tics to resolve themselves before adulthood.
  4. They sound expensive. http://www.neurogistics.com/TheProgram/index.asp#Program Of course, if it works, then it would be worth it. I also couldn't find any info about what their supplements actually are. Actually, according to another page, it sounds like they are just amino acid supplements. I can't see paying $60-120 per month for amino acids. http://www.neurogistics.com/TheScience/AminoAcids.asp I'm not sure if this is a legit op or a money making scheme that sells amino acids. btw, you can get those same amino acids at Vitamin Shoppe for a lot less. They also seem to measure neurotransmitter levels through urine tests. According to Dr. Weil's colleague, a neurologist: Source: http://www.drweil.com/drw/u/QAA400661/Neurotransmitters-What-Tests-Work-Best.html So I don't know how reliable their urine test is. It may just be an expensive supplement company under the guise of science.
  5. edit - the forum software let me type a longer title in than it will actually display. The full title is: "Sprirulina and/or Chlorella and/or Blue Green Algae and/or Wheat/Barley Grass?" Anyone every had a change in their tics from any of the aforementioned substances? Thanks!
  6. Before considering surgery, if Topiramate doesn't work for you, you may want to give Clonidine a try. Of the drugs that have been tested on tics, it has one of the most mild side effect profiles for most people, with the most common being drowsiness, dizziness if you stand up too fast, and libido. It works well for me and I take a tiny dose of it. I have found that the Clonidine made by Actavis has significantly less intense side effects than the Clonidine made by Mylan. The Mylan stuff made me super drowsy, gave me headaches and reduced my libido by quite a bit. The Actavis stuff has barely any noticeable side effects at all. I spoke to a pharmacist about this who told me I wasn't the first person to bring this up to her (regarding different brands of the same drug having different side effects). I'm in the US, though; I'm not sure what manufacturers you have in the UK. If that doesn't work, marijuana has also been effective in some studies (not sure what the legal status is in the UK), and there is also Marinol (prescription pill form of marijuana). Following those, there are few that don't have potentially severe side effects, including tardive dyskinesia (a potentially permanent movement disorder) and sudden death. Here is a list of all known drugs that have been tested on tics sorted by type: http://www.tourettestreatment.com/list-of-treatments.php Regarding Deep Brain Stimulation, I saw a guy on TV a few years ago who had that for his Tourettes, and the results were remarkable.
  7. Trouble sleeping with Clonidine? Clonidine makes me sleepy. I take it before bed. What brand and dosage is she taking? Does she still take it at night AND in the morning, or did you change the dosage to morning only? When she was taking it at night, was it helping the tics at all?
  8. I think I'm getting the flu and have heard good stuff about Sambucol but I want to make sure it is safe to use if you have tics. Has anyone here used it? Did it make tics any worse?
  9. I was referring to the rage side effect as "rare," not to the side effects in general, which are common. I think the dizziness, headache, tiredness, etc. side effects are normal, especially at first. I slept like 12 hours a day when I started taking it (0.05mg; 1/2 of a 0.1mg Mylan). I haven't seen short temper/rage mentioned anywhere as a side effect in any official documentation, although I have seen it mentioned online commonly enough that some people are experiencing it. Did you fill your prescription at Walmart? If so, it was probably Mylan brand. The pills are white. Maybe he remembers what they look like. I can't believe how much difference I had between Actavis brand and Mylan brand. I have like 87 Mylan pills left that I don't even want to take because they make me feel horrible. Of course, each person is going to have different side effects at different levels, which is why I said if someone wants to use prescription medication, it's probably best to start with the ones that, generally speaking, have less serious side effects (eg. tiredness vs. TD) and start with a lower dose. I can't even imagine what would've happened if I started with a full 0.1mg dose, considering 0.05mg pretty much knocked me out.
  10. Are you referring to rage? I mentioned that in my post. IIRC, I was feeling a bit short tempered when I was taking it, but that was when I was taking the Mylan brand which also gave me other strong side effects. My temper is back to normal on the Actavis brand. Chemar, do you remember what brand your husband took?
  11. Hi, I developed my tic at 17 years old. It's a hard blinking tic. As you state, it is rare for a tic to develop that late in life. I'm not sure why it developed, but here are some possibilities, in what I think is the order of likelihood: - I was using Flonase around that time (intranasal corticosteroid). Steroids are known to exacerbate tics, so it's possible I was on the threshold of developing tics and the Flonase pushed me over the edge - My high school was infested with black mold. Apparently this had been going on for years. They ended up closing the school, sending in a hazmat team to clean it up, making a bunch of changes, suing people, etc. The students were not even allowed back in to clean out their lockers. I'm not sure if mold has any correlation with tics but someone on this forum has suggested it does. Basically I was breathing in black mold every day for a few years prior to my tic starting. - I was getting allergy shots at the time (probably unrelated) and also taking the occasional Zyrtec (also probably unrelated) - I had mono around that time (probably unrelated). The doctors that I've been to also agree that a tic presenting itself in late teenage years if very uncommon. I'm 31 now and still have it, but I take a small dose of Clonidine at night which reduces its severity. I don't think you have Tourettes. I believe Tourettes is at least two motor (physical) tics and one verbal tic for a minimum of 6 months or something like that. If your only tic is your shoulder/head tic, you probably have either chronic or transient tic disorder. Do you have any other tics? Verbal tics? It's interesting you say they go away when you drive or play an instrument. People commonly report that their tics disappear when they are doing certain things. You may also find that they disappear when you go to the doctor's office (mine do), so if you see a doctor about it you may want to bring a video (use your cell phone if it can do that) to show the doctor. If I had to give you advice regarding treatment, it would be this: 1) identify if anything has changed for you in the last 6-12 months. Any new medications? Any new environments? Changes in diet? Any physical or mental changes? It may be something you're currently exposed to and may go away if you remove it. 2) have you had strep throat recently? 3) some people have had success reducing the severity of their tics through certain supplements. These include B vitamins and magnesium taurate. There are others but I forget. Fish oil may help. If you wish to try and take something to control it, it's probably best/safest to begin with supplements. 4) there are prescription drugs that work sometimes on tics, but out of dozens of drugs only a handful seem to be effective and still have a fairly safe side-effect profile. It's best to start with these more mild drugs at a very low dosage rather than some of the stronger ones. It's best if you educate yourself on this so you will be able to discuss it with your doctor and choose the drug that you feel is best to start with. The side effects range from sleepiness and dizziness to permanent movement disorders (which is the very thing you're trying to treat), to instant death from heart rhythm changes, so you probably want to start with drugs with the least bad side effects. Always start with a low dose. The four with the mildest side effect profile are: - Clonidine (aka. catapres) - An alpha blocker that is used to treat high blood pressure and is used off label to treat tics. Can make you sleepy, dizzy, headaches, lowered libido. I have personally found that Actavis brand has very mild side effects, while the brand Mylan gave me significant side effects. A rare side effect is rage. - Tenex - another alpha blocker with supposedly less tiredness side effects than Clonidine - Topamax - an anti-seizure medicine. Used by at least one mother on this forum with success - Marinol - cannabis pills. Studies suggest they are effective but depending on where you live, your doctor may not prescribe them. And I think they're expensive, too. To see a list of all known drugs that have been used to treat tics grouped by class and method of action and with notes about effectiveness, check this link: http://www.tourettestreatment.com/list-of-treatments.php Generally speaking, you probably want to stay away from any drug that has something called Tardive Dyskinesia as a side effect. Tardive Dyskinesia (abbreviated TD sometimes) is a sometimes permanent movement disorder which usually affects the face (tongue, lips, eyes) but can sometimes affect the body and limbs. None of the drugs I listed above are associated with this, however.
  12. How do you guys feel about the thimerosal/mercury free ones?
  13. Does the diet have to be maintained for life or once symptoms are cleared up can you go back to eating how you used to eat?
  14. Wow, sorry you had to deal with that. My neurologist and doctors were pretty cool and helpful. I'd recommend finding someone else AND leaving reviews online about the bad service you had. I have had a hard blinking tic since I was 17. I'm 31 now. While it hasn't eliminated it, Clonidine has made an improvement for me. I take 1/4 of a 0.1mg pill nightly, which is a total dose of 0.025mg. It might be something worth trying if you want to go the medication route.
  15. I have had a blinking tic since I was 17. I'm 31 now and still have it. Clonidine has made the biggest difference for me. I take 1/4 of a 0.1mg pill nightly (so that's a dose of 0.025mg). I have used two different brands of Clonidine: Mylan, which gave me some significant side effects, and Activis, which gave me almost no side effects. I thought that was strange since the active ingredient is the same, but the pharmacist I talked to about it said I'm not the first person to have similar experiences. Both brands gave me benefits, but the Mylan one had more side effects (sleepyness, eye aches, headaches, dizziness every time I stand up, and sexual side effects).
  16. Have you tried any medications or supplements to deal with the tics?
  17. I was thinking about taking glucosamine, chondroitin, and MSM because my knees have been hurting and I want to see if that helps. However, this particular type also has manganese: I thought I remembered reading something on here about manganese exacerbating tics so I thought I better hold off on taking it before I ask here. There are other brands that don't include manganese but my mom has the one I posted above and I can try hers for free (rather than buying a bottle of it myself), but if manganese is a no-no for tics I think I'll pass. Thanks. edit - we can't post pics here? Click this link then: http://i.imgur.com/mWf9V.jpg
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