FireFlysWay

Hello Valhariel: 1. As others have suggested, allergy is one of the surest triggers for vocal tics. In my case, in addition to specific foods, any harsh chemical odors (including perfumes) can set them off. I try to avoid them as far as possible. A key accompanying factor (in my case) is that my lungs go into a spasm (that is I can exhale but not inhale). This causes or increases the vocal tics. I have been helped by a)Magnesium: there is evidence that Mg relaxes the lungs, b)Lily of the valley pure essence - strangely, this helps me breathe deeply; there is science to support this. c) inhaling herbal bronchodilators such as vasaka (by placing a small amount on an incense burner. Another thing that helps in the management of vocal tics is the practice of yogic breath control (in particular, a technique called ujjaayi). 2. Another surefire trigger of vocal tics (in my case) has been mold allergy -- when it has been rainy, warm, and muggy and the house has not been adequately ventilated (as would be the case in fall or winter, when there are mild days). When I realize this, I take Pau D'Arco extract and experience substantial relief. 3. Elsewhere on this forum, I have discussed how Carnosine (not l-carnitine) has helped me with all aspects of TS. 4. Go upstairs to your neighbor; greet him courteously, and explain to him that you don't mean to intentionally disturb him but you have this medical condition. Look him in the eye and answer his questions. 5. You say "I am 5' 7" and 140 lb. I know, I am a little guy..." Are you so ashamed of yourself that you feel the need to apologize for your size? Feelings of self-inadequacy are common when one has an "embarassing" condition, but the only thing one has to be ashamed of is if one has hurt another or has been untruthful. Not of one's height, weight, or medical conditions. By the way, I am 5' 7" and 125 lb! Good Luck, Firefly.

Hi Fuschia: 1) I see many Carnosine & L-Carnosine supplements selling online, what is the difference between the 2? Can i get the L-Carnosine of should i go get Carnosine? I think they are the same; two sources I like are www.lef.org (high price and quality) and www.swansonvitamins.com (discount prices; 60 caps of 500 mg Carnosine under $20). 2) I see that you mentioned that once you get off Carnosine the tics return, so does this mean that i have to take Carnosine for the rest of my life? Also after taking it for a long period of time, do u know if the Carnosine supplements simply not take effect anymore over time? Yes, I think one needs to keep taking it. But I have observed some residual benefits such as the inner calmness (not flying into rage, etc) remain even after suspending Carnosine. (But I haven't tried suspending Carnosine for any length of time -- just a week or so). On the upside, Carnosine is an anti-aging supplement and you really feel that effect in the mornings when one is able to get out of bed without bodyache, etc. Would body develop resistance to Carnosine? I have completed a year on Carnosine, and it still seems to be working. I'd expect it to continue working since Carnosine's role seems to be that of a deficient nutrient rather than a drug. I am just desperate to find a relief for my tics as it gets socially embarassing! Trust me, I know the feeling! On the bright side, it can really help you figure out who your real friends are! If this is the first time you are attempting alternative therapy, I'd also recommend 1. Magnesium Taurate 2. Avoiding all kinds of allergens -- food, chemicals, perfumes, preservatives, etc. 3. Herbal detoxification 4. Meditation I hope Carnosine works for you. My best wishes are with you. Firefly.

Hi Anne: I am not qualified to make a statement on drug interactions with prescription medications. However, I know that Carnosine occurs naturally in the body and in meat products (if you eat 2 lbs of meat, you'll get about 500 mg of Carnosine, I think). If your son is 120 lb or over, you should consider giving him 1.5 g of Carnosine per day. I take 1 g in the morning and 0.5 g at bed time. The body is constantly metabolising Carnosine into component amino acids, so it is important to take enough to stay ahead of this process. I hope your son has good results with Carnosine. Firefly.

Brett: Carnosine is a natural compound found in the body. It is a dipeptide (made of two amino acids), so it's a little protein. You can read more about it in a thread that I started on this site called "Carnosine - A Miracle Remedy" Good Luck, Firefly.

Mommaonamission: I am so glad your son is doing well on Carnosine and the other supplements you are giving him ! While most people focus on the tics problem (understandably), another TS symptom is the explosive, uncontrollable episodes of rage. This could lead to a lot of relationship damage, especially in case of TS adults, if it is not recognized as a TS symptom and dealt with accordingly. The great thing about Carnosine is that it appears to get rid of the "rage" problem almost completely (in my case and a few others I am aware of). In case of TS kids, you may observe that the child is calmer, more "reasonable", less on a hair trigger and not given to explosions. I'd love to hear from moms of Carnosine kids if they notice a calmer personality (apart from the reduction in tics). Good luck to everyone, Firefly.

Kim, Thanks for the cautionary note; we should always keep the possible risks in mind. An indication that one has carnosineurea (i.e., carnosine excreted in urine) is that you may get a white spot on your finger nail. This has happened to me once or twice in the last year (I was taking 2 g per day). One can reduce the dosage if this occurs. Of course, the white spot, once it appears won't go away but will travel toward the fingertip (as the nail grows). Giselle, I am glad to note you are taking Carnosine, too. What has been your experience? Mommaonamission, Thank you for your kind words. Sorry about your son's ordeal. If you are chary of trying supplements, you may want to get him to learn some breath control techniques that may help him with the vocal tics. If there is a good Yoga teacher (not the current, fashionable types) who knows Pranayama (the yogic breath control), ask him/her to teach your son a technique called Ujjaayi. Also, be very careful about perfumes, harsh smelling cleaning chemicals, etc., which can make the repiratory tract go into a spasm and induce vocal tics. I've found two essential oils really help relax the bronchospasm (which, in my experience, is what causes the vocal tics) --- Rosemary oil, and Lily of the valley. There is scientific research attesting to their lung spasm-relieving qualities. And, one of the components in Rosemary essential oil is -- are you ready for this? -- carnosic acid !! Good Luck, Firefly.

Giselle: Amazing! I'm sure if you were to conduct a survey of TSers, you'd find an overwhelming majority of them were grossly underweight as children (may be as adults, too). But I'm sure your child will hit that magic number soon and get out of the booster seat! By the way, thanks for putting a link to this thread on BrainTalk. Hope the kapos over there don't throw it out! Firefly.

Giselle: I am so happy for you and your son. Carnosine appears to stop the death of brain cells caused by excitotoxicity. Cells (all cells, not just neurons) live much longer and are able to divide more number of times when Carnosine is present. I have noticed the morning effect, too. Waking up not only earlier, but fresher. Carnosine is present most in brain and muscles. The latter location is important for the natural development of muscles. It is my theory that an inherent deficiency of Carnosine is why many (most?) TS people are thin -- no matter how much they exercise. You'll be surprised by how much more muscle your son will naturally put on over the next year. And he will not tire as easily by physical activity. Best wishes, Firefly.

Hi Giselle: I hope your son is continuing to do well on Carnosine. I think "mellow" is good. My experience is that Carnosine makes me calm but very alert (not dreamy at all). My subjective expressions of the feeling are "there is a deep quietness," "the volcano in my brain has been quenched," or "the quiver inside has subsided." I'd be interested to know your son's subjective feelings and your objective observations of Carnosine's effect. Good Luck again, Firefly.

Giselle: I hope Carnosine works for your child. I know the darned thing is expensive, but the quietness inside my brain makes it worth the price! I hope you didn't buy yours at a local healthfood store (where I have seen exorbitant prices). LEF or Swanson seem best, at about $1 per gram. Waiting to hear your update, Firefly.

nursepatti1, While Carnosine is a natural compound and is considered very safe, I'd not administer any therapeutic supplement to a 12-year old without consulting a doctor. There is the issue of appropriate dosage. If you are a nurse (as your handle suggests), you probably are very familiar with safety issues; however, it would still be a good idea to consult a physician who is open to alternative therapies. Carnosine is available at most health food stores that stock supplements. Online, two good sources are www.lef.org and www.swansonvitamins.com Good Luck and keep us posted, Firefly.

Jason: I am glad that you have started to take Carnosine and find it helpful. In a week or two, you should know the degree of benefit you are getting from it. I hope you'll be as lucky with Carnosine as I have been. The best scientific article on the mechanism of Carnosine is http://www.protein.bio.msu.ru/biokhimiya/c...l/65070998.html A paragraph you'll certainly appreciate is "Uncontrolled increase in excitotoxic compounds (glutamate, aspartate) in the interneuronal medium is an important pathogenic factor of development of ischemic injury of the brain. These excitotoxic compounds induce sustained activation of the corresponding receptors providing for pleiotropic effects of their activation in the cell, thus altering intracellular homeostasis. Activation of glutamate receptors by kainate (KA) or N-methyl-D-aspartate (NMDA) is associated with Ca-dependent formation of reactive oxygen species inducing massive cell death. Pretreatment of neuronal suspension with carnosine protects the cells from KA- and NMDA-dependent injury. Suppression of glutamate receptor-dependent toxicity was dose-dependent, and IC50 was 0.75 mM; this value is similar to the physiological concentrations of carnosine in the vertebrate brain [37]." The Russians have been at the forefront of Carnosine research. My everlasting gratitude to them. Regards, Firefly.

Jason: Thank you for the very interesting website link! I will certainly check it out. I would agree with you that many neurological disorders (epilepsy, TS, autism,...) are different expressions of similar patterns of neurolopathology. While I am no medical expert, I have (as you probably do) an insider's insight into my brain. When I try to educate myself on the neuroscience, something clicks inside! As you know, glutamate is one of the excitatory neurotransmitters, which if not adequately captured by receptor sites, can cause toxicity to neurons, inducing them to commit suicide (apoptosis). Apparently, Carnosine can protect the neurons (by simulating the receptor sites?). A related observation, whenever I eat at a Chinese restaurant that uses MSG (mono sodium glutamate), the symptoms get worse! Of course, I am also bothered by cold&dry weather, mold, strong perfumes, etc. So, it must be the glutamate in the brain, not just the diet. From your description, you seem to have a relatively mild case of TS (good for you!). I don't know if the shallow breathing is characteristic of all TS individuals, but is unmistakable in my case, especially in the throes of an episode. If I take a deep breath (in fact, several) I find that the tics quieten down. This is a problem because the lungs won't cooperate but go into a spasm. In fact, I have found some of the yogic breath control techniques (pranayama) to be useful as tic management tools that can moderate the intensity of an episode. These are typically useful for adults (not suitable for little children); so I haven't discussed them here (there are very few TS adults on such forums, I guess). ......Perhaps avoiding the glutamate and aspartate foods would take you that last 5% or make it so that you don't need the carnosine. Carnosine IS what is providing the 95%, so I'd still need it. Also, its anti-aging effects are palpable. Yes, it is expensive (unfortunately). But, you can get it for under $20 (60 cap, 500 mg each). That is $1 per day, not too bad. Good Luck and keep us posted, Firefly.

Hi Mike: The time of day doesn't matter. I used to take 500 mg of Carnosine (in a formulation similar to LEF's Chronoforte) in the morning, 500 mg of pure Carnosine each at 4 PM and 10 PM. Now I take 1000 mg of Carnosine (part of the new Mitochondrial formulation of LEF) in the morning, and 500 mg of pure Carnosine at night. I hope the stuff works as well for you as it does for me. Keep us all posted. Good luck, Firefly.

Thanks, Chemar. I checked it out, seems to be an interesting site! It doesn't have a forum, though. I was looking for a place where TS adults or teens hang out online. Firefly

I notice that most of the participants on this forum (80-90% ?) are parents of a TS child. I am certainly happy for them and glad that they are here, but where are the TS adults and, especially, TS teens? I wonder, Firefly.

No I don't. The main group of supplements that I take (other than Carnosine) are anti-inflammatory substances, particularly for the respiratory system. As I have already explained, in my case, the tics are always accompanied by (even preceded by) short and shallow breathing, bronchospasm, and a feeling of suffocation in the brain. So I take Grapeseed extract, rosemarinic acid, quercetin (plus Vit C), Cordyceps Sinensis, curcumin, etc. The other group of supplements I take consists of Mg, Zn, and Taurine. Firefly.

Re: SDK and 'ad ccl' comment about mold In my experience (as an adult TS), hot and humid or rainy weather significantly increases the tics. In the mid-90s, I had a terrible time with candidiasis and systemic mold infection brought on by prescription antibiotics. In addition to food allergy, I had rheumatoid arthritis and prostatitis. Among the many things that helped me out of it (probiotics, coconut oil fractions like caprylates, thyme, triphala, capsaicin, stabilized oxygen), I would like to mention Pau D'Arco which I have found to be very effective against molds. Even today, when I feel humidity and the mold spores in my system (they never go away) starting to awaken, I take Pau D'Arco with good effect. Firefly.

Did I violate a forum rule by giving a web link in the previous message? If so, would the moderator please remove it? Some forums allow it and some don't. I am not sure here. Thanks, Firefly.

You can find a comprehensive summary of Carnosine's actinos and benefits at this link: http://www.ethosplan.com/l-carnosine-information.asp FireFly.

Yes, the same name. You don't have to ask them to repost my entry. Simply post a message that there is someone detailing his experience with Carnosine on Latitudes. That way, you won't endanger your membership! FireFly.

Giselle: I am not trying to sell anything. The extra dose of enthusiasm you may note in my post is understandable when you view that a person who has had TS for 50 years encounters a remedy that wipes out 95% of his symptoms! I am unable to contact the moderators of the TS forum on BrainTalk, because I am no more a member. You could, if you will, post a message there pointing to my post here. My only reason for posting my story is that there may be some young person whose life may be changed as a result of what I have stumbled upon. Thank you, Firefly.

Andy: You may be right that; it may be the chelating action of carnosine. However, I don't think it is alpha lipoic acid plus acetyl carnitine. When I have run out of Carnosine plus, I have simply used three 500mg of Carnosine (single ingredient) per day with the same results on my TS. But, make no mistake, alpha lipoic acid plus acetyl carnitine has a strong anti-aging and subjective well-being effect. I also take a whole bunch of other supplements, primarily anti-inflammatory and anti-allergic substances such as curcumin, rosemarinic acid, cordyceps sinensis, etc. I have found that any allergenic stimuli worsen the symptoms drastically (not so much after carnosine) -- particularly smelly chemicals and perfumes, certain foods (cheese, unboiled milk), synthetic carpets in contact with bare skin, etc. The response, in my case, has always been in the form of bronchospasm followed by tics, especially vocal ones. Knowing and avoiding allergens can reduce the incidence and intensity of the problems significantly. Regarding heavy metal toxicity, I am sure you are aware that cilantro is an excellent remover of mercury from the body. Regards, Firefly.

I posted my story on BrainTalk TS forum too, but they threw it out and shut me out of the site, too! I wonder why? Firefly

Please understand that I, having had TS for half a century, would be the last person to raise false hopes in the hearts of TS families. I hope Carnosine works for you, but it may not. Having said that, here’s my experience….. I am male, 52 years old. I have had TS since I can remember. Over the course of my life, the symptoms may have changed, but the intensity, for the most part, has not. I would put it at 7 on a scale of 1 to 10. Mainly vocal and motor (face, hands) tics, and echolalia. No coprolalia. As you might expect, I went through the usual “allopathic” treatment (haloperidol et al.) in the 1970s. Also, alternative treatments such as supplements, self-hypnosis, breath control, hypo-allergenic lifestyle, etc., etc. Above all, I have been a keen student of myself, observing and developing insights into my body that no doctor can do. Also, I have educated myself on the science and medicine of the syndrome. The various approaches have been helpful to differing degrees which I can discuss separately if there is an interest. To Carnosine…. I have been interested in alternative, eastern, and orthomolecular medicine for a long time and have followed the developments keenly. Late in November 2004, I read about Carnosine’s pharmacological actions and how in some cases of autism, the results have been dramatic. All I knew about TS from inside my body suddenly clicked into place. I can talk about it later if there is an interest, but briefly: Carnosine protects neurons from glutamate-induced and/or hypoxia-caused, glycation-mediated, toxicity and cell death. All my life I have witnessed an attack of tics accompanied by cessation of breathing, bronchospasm, and resulting feeling of hypoxia in my brain. I recorded this observation in my 20s! I have always realized what was happening in my brain during a severe episode was akin to a fish out of water, thrashing about in its death throes. To make a long story short, I ordered Carnosine Plus from SwansonVitamins.com (containing Carnosine, alpha lipoid acid, acetyl carnitine, biotin, nettle extract). I took 3 capsules one night in early December 2004. I woke up the next morning feeling completely transformed…… and I have stayed so for the last 8 months. I am 95% tic-free (except under environmental or psychological stress such as high humidity, heat, dry/windy cold, strong emotions --- when I am only about 75% tic-free). More than the tics, more than anything else, it is the feeling inside my brain that is remarkable; the permanent quiver I have had forever has ceased. It is quiet and cool in there, no random firing of neurons. I am sure persons with TS will know exactly what I mean. I visited my mother this past March; I never mentioned Carnosine to her. She remarked on her own that 98% of my tics had vanished. Even more importantly, I don’t blow up (in the face of day-to-day crises) anymore. The volcano seems to have been quenched (while I am taking Carnosine, that is). In April, my wife mentioned Carnosine to her friend who has a 40ish son with TS. He bought his son a bottle of Carnosine. He has reported back that the tics are much milder, and the person is much happier and has suddenly become more sociable. This is hearsay, I am simply passing it along. How do I know it is Carnosine and not the other ingredients? I take one dose of Carnosine Plus (500 mg) and two doses of Carnosine 500 mg capsules (for a total of 1.5 g per day). And it is not a “cure;” go off the supplement for 2 days, and the tics are back again. Here, then, are some bits of info about Carnosine: 1. Carnosine is a dipeptide made of two amino acids, histidine and alanine. It occurs naturally in meat, but in small quantities. The body metabolizes carnosine into its components, so an adult dose of at least 1000 to 1500 mg is necessary to stay ahead of this decompositional process and have adequate Carnosine in the system. I don’t know what the minimum effective daily dose for a child might be (500 mg is worth a try?). You can take it with or without food., all in one dose or in 2-3 divided doses. 2. Carnosine is very safe. It would take 200,000 - 400,000 mg (based on body weight) to get Carnosine toxicity. 3. Carnosine has been found to have a dramatic effect in some cases of autism. It has also been tried in cases of intractable childhood epilepsy (due to its neuroprotective effects). In addition, it is useful in case of PDD, ADD, ADHD, and apraxia. Carn-Aware is a pediactric formulation with 200mg Carnosine, Zinc, and Vit E. (carn-aware.com) 4. Carnosine is an anti-aging supplement, owing to its ability to prevent pathological glycation. Basically, aging is a sort of slow cooking within the body. The amino group of a protein and the carbonyl group of a sugar or fat combine to form toxic products which promote the production of free radicals, and damage the DNA. Amino-carbonyl reaction is the same reaction which give the golden brown color and great aroma to baked goods, French fires, grilled meat, etc.! Carnosine inhibits this process. Carnosine eye drops can arrest and even reverse cataract development in the elderly. In summary, Carnosine is a safe and effective supplement for the general population. That’s it for now. I hope you’ll try Carnosine; I hope you’ll experience the same level of benefit that I did. And I hope you’ll share your experience here, so that we may get a larger picture. I will try to post this in as many TS forums as I can. With much good wishes, Firefly.