Various types of treatment/Veganism & Tourette-Syndrome

[Hermann]

Hello !!!

 

My name is Hermann, I'm new to the forum and would love to meet other people with similar disorders. I am from Germany and my english is not so good, especally to explain complicated neurological and nutritional experiences, but I try my best and I hope you'll understand me! Thank you!

 

I am 49, my TS started when I was 12 years old with eye blinking and shaking my head. It was terrible and I had problems to concentrate at school. Four years later painful spasms in the upper arms appeared and some vocal tics. In the following years I had many ups and downs, sometimes more motor and sometimes more vocal tics. I tried many medications like Tiapridex, Risperdal, Orap, Haldol, Zyprexa, Zeldox, Solian etc. ... nothing helped me and after many years I stopped any medication and started to live my life without that. Homeopathy, Hypnosis and some other natural methods helped only a little bit and for a couple of weeks. But they didn't change the conditions of my TS.

 

1985 I came in contact with an old female doctor and after many many tests she gave me the advice to try a vegan and yeast-free diet. It was very hard for me, because I loved to eat diary products, fish and sometimes meat. After a long process, I noticed, that the advice of this old woman was the best I ever experienced regarding to my TS and the search for help. This special diet reduced the painful convulsions in the upper arms nearly complete and the motor tics for more than 50%. The abandonment of yeast (Baker's yeast in bread etc.) stopped the inner restlessness in my muscles.

 

These are my personal experiences and I don't know which meaning it has for other Tourette's! In my country, the neuro-scientists are not interested to research in this field -> Tourette's and our daily food! So I don't know, what is behind that all !!? Are there any connections between the metabolism of Dopamine and animal proteine for example? ...

 

Anyone here in this forum with similar experiences? I would be glad to come in contact.

 

Hermann

 

PS: After the definition of some Vegan Societies I am a "dietary Vegan" because I joined to this way of eating not because of ethical oder spiritual reasons

[Chemar]

Hi Hermann and welcome

 

you will find that this forum is filled with people who believe in the natural approach to treating Tourettes and we certainly do feel that diet is a key factor in this!

 

If you start to read through many of the threads here you will find a great wealth of information on the various things that we have found to be helpful.

 

Many have also found, as you did, that the prescribed medications dont help much and instead bring a whole nasty lot of side effects!

 

Sheila Rogers, who is the Editor of Latitudes and to whom we all say "thanks" for this great website has also written an excellent book on these natural ways to treat tics and Tourettes

http://www.latitudes.org/book.html

 

My son has, in addition to the diet and supplements, has always found acupuncture to be very helpful, and his therapist has recently obtained some new technology from Germany called Frequency Specific Microcurrent or FSM....a revolutionary form of resonance biofeedback that is especially for pain/inflammation etc, but which my son also finds calms his tics..................here is a website about it http://www.frequencyspecific.com

 

we look forward to learning more of your own methods, and getting to know you

[Hermann]

Hi Chemar,

 

thanks for your reply! I was already thinking about to buy the book of Sheila Rogers. I am sure, I am gonna make it very soon.

 

It would be important for me to find out, if any persons with Tourette's have similar experiences. Maybe I meet someone here ...

 

I guess it is very important that Tourette's have international contacts to share experiences and informations. Many are still living very isolated. If someone is able to speak German, I am providing an Tourette-Forum in German language, the URL is -> www.tourette-forum.de (with one category for english speaking people) and if the admin(s) of this forum agree with it, I would like to set an Link to this forum! Please tell me !!!

 

Hermann

[Chemar]

Hermann

congratulations on starting a Forum over there

 

Here is the contact information for Sheila Rogers so you can ask about linking

http://www.latitudes.org/contact.html

 

Although my son is not vegan or vegitarian, yet he has certainly found that healthy eating is an essential for keeping his tics and his OCD under control. He avoids all artificial foods, especially artificial flavouring, colouring, artificial "diet" sweeteners and preservatives, also no MSG, high fructose corn syrup etc

 

Taking a correct balance of vitamin/mineral/amino acid and herbal supplements has also been key in helping his TS go from very severe to now very mild.

 

I will write more about it later, but I am even more Anti-prescription medication for tics now than ever before, as those brain drugs really hurt my son, and, even 6 years since coming off those meds, which he was on for a year, we are still discovering the damage they did to him!!!

 

although I dont speak German, I understand a little of it as I can speak Afrikaans, which is derived from Dutch (from South Africa) and so I understand Dutch and Flemish well, and a bit of German

[Hermann]

Hi Chemar,

 

I am also avoiding artificial food and flavourings as good as I can. A very special problem I have with monosodium glutamate in chinese and other food. It worsens my motor tics and leads to more spasms in the range of shoulder, neck and upper arms.

 

Do you or your son have any experiences with monosodium glutamate?

 

Hermann

[Chemar]

Hi Hermann

 

yes...we call monosodium glutamate MSG and it is a BIG tic trigger for my son and I believe really unhealthy for everyone!

 

the other big food additive thing that sets my son's tics off is the high fructose corn syrup which the American food companies seem to put in EVERYTHING

 

the sweeteners like aspartame (nutrasweet) and sucralose(Splenda) seem to also cause him increased tics and mega increased OCD/brain fog as do those pesky artificial colours like red40 and yellow5 etc

Why o why do they feel they have to make everything coloured??!!! even white marshmallows have blue colour added

[kim]

The Double Danger of

High Fructose Corn Syrup

 

http://www.westonaprice.org/modernfood/highfructose.html

 

 

Battling the "MSG Myth"

 

http://www.msgmyth.com/

 

 

 

*sorry no url for this

 

Flavor Enhancers

> > Monosodium glutamate (MSG), hydrolyzed soy protein,

> > autolyzed yeast extract, disodium guanylate or

> > inosinate

> > There are over 40 food ingredients besides

> > "monosodium glutamate" that contain processed free

> > glutamic acid (MSG). Each, according to the FDA,

> > must be called by its own, unique, "common or usual

> > name." "Autolyzed yeast," "maltodextrin," "sodium

> > caseinate," and "soy sauce" are the common or usual

> > names of some ingredients that contain MSG. Unlike

> > the ingredient called "monosodium glutamate," they

> > give the consumer no clue that there is MSG in the

> > ingredient.

> >

> >

> > Sweetners

> > Sucrose (sugar),

> > glucose, fructose,

> > sorbitol, mannitol,

> > corn syrup,

> > high fructose

> > corn syrup,

> > saccharin,

> > aspartame,

> > sucralose,

> > acesulfame

> > potassium

> > (acesulfame-K),

> > neotame

> >

> > Preservatives

> > Ascorbic acid,

> > citric acid,

> > sodium benzoate,

> > calcium propionate,

> > sodium erythorbate,

> > sodium nitrite,

> > calcium sorbate,

> > potassium sorbate,

> > BHA, BHT, EDTA, tocopherols (Vitamin E)

> >

> > Autolyzed, hydrolyzed, glutamate, glutamic acid,

> > hydrolyzed, autolyzed

> > HIDDEN SOURCES

> > OF PROCESSED FREE GLUTAMIC ACID (MSG)

> > NAMES OF INGREDIENTS THAT CONTAIN ENOUGH MSG

> > TO SERVE AS COMMON MSG-REACTION TRIGGERS

> > The MSG-reaction is a reaction to free glutamic acid

> > that occurs in food as a consequence of manufacture.

> > MSG-sensitive people do not react to protein (which

> > contains bound glutamic acid) or any of the minute

> > amounts of free glutamic acid that might be found in

> > unadulterated, unfermented, food.

> > These ALWAYS contain MSG

> >

> >

> > Glutamate Glutamic acid Gelatin

> > Monosodium glutamate Calcium caseinate Textured

> > protein

> > Monopotassium glutamate Sodium caseinate Yeast

> > nutrient

> > Yeast extract Yeast food Autolyzed yeast

> > Hydrolyzed protein

> > (any protein that is hydrolyzed) Hydrolyzed corn

> > gluten Natrium glutamate (natrium is Latin/German

> > for sodium)

> >

> >

> > These OFTEN contain MSG or create MSG during

> > processing

> >

> >

> >

> > Carrageenan Maltodextrin Malt extract

> > Natural pork flavoring Citric acid Malt flavoring

> > Bouillon and Broth Natural chicken flavoring Soy

> > protein isolate

> > Natural beef flavoring Ultra-pasteurized Soy sauce

> > Stock Barley malt Soy sauce extract

> > Whey protein concentrate Pectin Soy protein

> > Whey protein Protease Soy protein concentrate

> > Whey protein isolate Protease enzymes Anything

> > protein fortified

> > Flavors(s) & Flavoring(s) Anything enzyme modified

> > Anything fermented

> > Natural flavor(s)

> > & flavoring(s) Enzymes anything Seasonings

> > (the word "seasonings")

> >

> > In ADDITION...

> >

> > The new game is to label hydrolyzed proteins as pea

> > protein, whey protein, corn protein, etc. If a pea,

> > for example, were whole, it would be identified as a

> > pea. Calling an ingredient pea protein indicates

> > that the pea has been hydrolyzed, at least in part,

> > and that processed free glutamic acid (MSG) is

> > present. Relatively new to the list are wheat

> > protein and soy protein.

> > Disodium guanylate and disodium inosinate are

> > expensive food additives that work synergistically

> > with inexpensive MSG. Their use suggests that the

> > product has MSG in it. They would probably not be

> > used as food additives if there were no MSG present.

> >

> >

> > MSG reactions have been reported to soaps, shampoos,

> > hair conditioners, and cosmetics, where MSG is

> > hidden in ingredients that include the words

> > "hydrolyzed," "amino acids," and "protein."

> >

> > Low fat and no fat milk products often include milk

> > solids that contain MSG.

> >

> > Drinks, candy, and chewing gum are potential sources

> > of hidden MSG and of aspartame and neotame. Aspartic

> > acid, found in neotame and aspartame (NutraSweet),

> > ordinarily causes MSG type reactions in MSG

> > sensitive people. Aspartame is found in some

> > medications, including children's medications.

> > Neotame is relatively new and we have not yet seen

> > it used widely. Check with your pharmacist.

> >

> > Binders and fillers for medications, nutrients, and

> > supplements, both prescription and non-prescription,

> > enteral feeding materials, and some fluids

> > administered intravenously in hospitals, may contain

> > MSG.

> >

> > According to the manufacturer, Varivaxâ€"Merck

> > chicken pox vaccine (Varicella Virus Live), contains

> > L-monosodium glutamate and hydrolyzed gelatin both

> > of which contain processed free glutamic acid (MSG)

> > which causes brain lesions in young laboratory

> > animals, and causes endocrine disturbances like

> > OBESITY and REPRODUCTIVE disorders later in life.

> > It would appear that most, if not all, live virus

> > vaccines contain MSG.

> >

> > Reactions to MSG are dose related, i.e., some people

> > react to even very small amounts. MSG-induced

> > reactions may occur immediately after ingestion or

> > after as much as 48 hours.

[Hermann]

Hi Chemar,

 

thanks for sharing your experiences! Regarding to ASPARTAM -> it is Phenylalanin, a precursor of Dopamine! I heard several Tourette's already who spoke about a bad influence on their tics.

 

Do you know physiotherapy by Vojta in the US? It helped me really to calm down my motor tics and to get a special feeling for a better motoric self-organization.

 

Hermann

[Chemar]

actually Hermann, aspartame is a chemical compound made from phenylalanine PLUS aspartic acid ........aspartic acid is EXCITATORY and thought to be the major cuplrit here.

 

 

Phenyalanine (the DL form) was actually VERY helpful to my son when he was going through a phase of very troubling OCD induced tics that caused injury. D phenylalanine stimulates endorphins while the L phenylalanine seems to stimulate the serotonin system. This proved to be very effective treatment in controlling those OCD linked tics for my son. It is also a very good pain reliever in the DL form It is not recommended for long term use, but rather on an "as needed" basis

 

However, Aspartame is VERY different from pure phenylalanine as it is:

an artificial, non-carbohydrate sweetener, aspartyl-phenylalanine-1-methyl ester; i.e., the methyl ester of the dipeptide of the amino acids aspartic acid and phenylalanine. It is marketed under a number of trademark names, such as NutraSweet, Equal, and CANDEREL,

 

 

 

Splenda aka sucrolose is glibly marketed as "tastes like sugar because it is sugar" when in fact it is sugar which is chemically altered by replacing carbon atoms with chlorine ones...............

Chlorine is a major tic trigger for many people

[Giselle]

Hi Hermann! As to your English - it's better than many here in the US! As to eating animals. My son is highly reactive to corn. It seemed he was also reacting to different meats until we tried grass fed beef and lamb - no tics! I believe it is what they were feeding the animals (corn) that caused his problems. We give him chicken and eggs also but both are free range and get soy which he's also allergic to but not as badly so only in small amounts - he does so much better eating this than regular chickens that get corn. Grass fed beef and lamb are quite expensive here but sooooooo very worth it for him.

 

He is also very effected by dyes, and artificial sweeteners and they are a no no. He's also allergic to wheat (gluten) and dairy so he doesn't get those either. He gets many vitamins and nutritional supplements and we find we also must keep his intestinal yeast down. As a result he is free of tics almost all the time. He tends to tic if he's sick (or about to be) and during the spring when seasonal allergies complicate things. If he's in a bad way seeing movies also triggers tics (the flicker rate)- but if he's doing well movies are fine. Computer screens and TV don't pose any problems for him.

 

All the best and congratulations on finding what helps you!

Giselle

[Hermann]

He tends to tic if he's sick (or about to be) and during the spring when seasonal allergies complicate things.

 

I made the same experience and I also heard this very often by other Tourette's from Germany: two or three weeks before springtime, motor an vocal tics increase to a notedly higher level.

 

Hermann

 

 

Tourette's -> never give up !!!

[Guest Deborah Arcangelo]

Hi Hermann! As to your English - it's better than many here in the US! As to eating animals. My son is highly reactive to corn. It seemed he was also reacting to different meats until we tried grass fed beef and lamb - no tics! I believe it is what they were feeding the animals (corn) that caused his problems. We give him chicken and eggs also but both are free range and get soy which he's also allergic to but not as badly so only in small amounts - he does so much better eating this than regular chickens that get corn. Grass fed beef and lamb are quite expensive here but sooooooo very worth it for him.

 

He is also very effected by dyes, and artificial sweeteners and they are a no no. He's also allergic to wheat (gluten) and dairy so he doesn't get those either. He gets many vitamins and nutritional supplements and we find we also must keep his intestinal yeast down. As a result he is free of tics almost all the time. He tends to tic if he's sick (or about to be) and during the spring when seasonal allergies complicate things. If he's in a bad way seeing movies also triggers tics (the flicker rate)- but if he's doing well movies are fine. Computer screens and TV don't pose any problems for him.

 

All the best and congratulations on finding what helps you!

Giselle

[Giselle]

Hi Deborah, I think you hit the quote or reply button instead of going way farther down to hit add reply. You might want to try again - it is a bit confusing but do try again as we'd love to hear what insight or question you might have! Welcome to Brain Talk.

Giselle

[Guest Deborah Arcangelo]

Hermann and all, I am new to this forum but not to TS. I have an 18 year old son who was diagnosed at age 4. his biggest concern has always been upper body tics. We have tried many treatments with little or no positive results. He is just beginning Dr. Semone's system to address yeast buy eliminating malt and vinegar in his diet. I am feeling very overwhelmed, he is feeling desperate and hopeless. He will be moving in college dorms in less than 8 weeks and he still does not have any level of control over his tics. Can anyone give us guidance and assistance? especially in how to most effriciently identify what foods he should be eating etc and most importantly - how does he continue to eat wholesome foods while living in a college dorm? any help is greatly appreciated. Debi

[Giselle]

Hi Debi, going the more natural route isn't something that can happen over night. What I would do first is find a DAN doctor, and Environmental doctor or Integrative Medicine doctor as soon as you can. They can do a whole bunch of tests quickly and rule out a lot of things and zero in on what would be most helpful. In my son's case delayed food allergy, yeast, heavy metals, and vitamin deficiency all played a part. If your son has yeast issues hitting it quickly and hard might be the best way to see some concrete gains quickly. My son was prescribed Nystatin initially and we saw instant results - we still have him on it when he's particularily yeasty but we are trying to get his body to get rid of it itself with other supplements that these doctors could tell you about. Allergy is tricky - the scratch test doesn't tell you much so I suggest a delayed food allergy test which again they can do for you - it is a blood test. It will tell your son which foods he can and can't eat - we also saw huge gains by avoiding his triggers (by the way, right away get him off anything artificial and dyed as those are huge tic triggers). Vitamin deficiency is again another blood test and my son was deficient in B12, zinc and B6 - we addressing this and it is very helpful. We also did a neurotransmitter test through NeuroScience which made the biggest difference but I don't think it would have had we not done all the other things in conjunction. A pyroluria test would also be a great thing to do and if your son has this it is very treatable. Please read all that you can here and again try to find a doctor who can run these tests, you'll both be glad you did.

 

Good luck,

Giselle