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CarolynN

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    CarolynN got a reaction from kmilligan06 in Hopeful things to share (what I found that helped)   
    Hello!  I wanted to share some things that I think may be helpful to understanding a part of the puzzle, for some,  with Tourettes and also OCD.    Many years ago I was an active member on this forum.  My son, Daniel, has Tourettes and I have OCD.  The very good news is my son is now 19 years old and honestly you would never know he has Tourettes.  He is doing amazing.  Once in a while I see a little eye tic but that is it (but barely only when he gets nervous.  What a difference from when he was 7 to 10 years old).  But  I want to share with you some insight that may help some of you that I have learned.  I know there is so much information out there and our bodies are so complicated that it is not a one size fits all issue.  I have found out that there is something in our family that is definitely an issue  that was influencing my son's tics and also my OCD.  It is histamine intolerance.  Meaning that in my family our bodies are getting too much histamine in our bodies and it is affecting our neurotransmitters ultimately in my son's tics and for me obsessive thoughts. 
    There are many, many articles out there about histamine intolerance and what to do but this is a tiny synopses.  Histamine occurs naturally in many foods.  Also, some people just do not have the right enzyme base to break it down or their bodies are just poor at processing it and what happens is your get this build up of histamine that ultimately changes the way your neurotransmitters are working.   Histamine actually has multiple functions in the body not just affecting the neurotransmitters.  Just do a Google search on "Histamine Intolerance or Mass Cell Activation Disorder" and you will get lots of info.  
    When I was doing my research many years back for Daniel I kept coming back to histamine being a problem and how it affects the neurotransmitters (especially how it affect dopamine which drives the tics).  So I have known about this histamine issue for some time but now it has become even clearer for me.  When Daniel was younger I would give him supplements him B6, magnesium taurate, glycine (which helps with the neurotransmitters), zinc (do not take on empty stomach), vitamin c.  These things all really helped him but I really did not understand why back then.
     So to take this a step further about 3 years ago my OCD was getting bad enough I spent the money and went to the Mensah Medical (I live in Arizona but they come here periodically but they also do phone consultations.  They are based in Illinois)  and it was verified that I indeed have this histamine intolerance along with a copper overload.  I have been on a compound the Mensah Medical had formulated for me to lower this histamine response and deal with the copper overload and I feel soooo much better I cannot tell you.  It really made a difference.  The Mensah, unfortunately is pretty expensive, but I learned a lot and I learned that these obsessive thoughts (that I would take to personally that it was a reflection of who I was as a person) is something I could now separate myself from and realize this is part of a situation where my body is processing things biologically incorrectly due to this histamine issue/copper issue and it was not a reflection of who I was as a person ( OCD obsessive thoughts always goes after what you value most in life which is the most frustrating part of OCD).  I was at the point back, when I decided to go to the Mensah medical, where I was obsessing about obsessing if that makes sense. I am Christian and I had prayed for an answer for my OCD and through a series of events I got my answer and it was the Mensah medical.  
    So fast forward to now and my daughter who is 15 has been getting depressed, has bad  migraines, and complaining that her stomach hurts all the time.  It dawned on me the other day about this histamine issue and I thought I wonder if this could be going on in her but in a different way (when I started researching all her symptoms are symptoms of histamine intolerance).  So the last few days I started giving her supplements to control the histamine more in her body B6, Magnesium Taurate, Quercetin, B2, Zinc, and NAC and also stopped giving her foods that are high in histamine and guess what her stomach is feeling better, her mood has changed, and her headaches are better!  That is just after a few days.   My other son, Zach, he is 18 and he has pretty bad digestive issues and I think this is what is going on with him too.  That is the interesting thing with this histamine intolerance is it can affect people in different ways.
    So to tie this together even more, this past year 4 of our family members, one being Daniel, decided to do " 23 and me" genetic testing.  Well if you purchase the 23 and me kit  that shows your health traits you can see a lot of genetic things that could influence your health.  When you pull up the "23 and me results" they show you all kinds of DNA health traits.  But there are some DNA things they do not show and I found a website called Genetic Lifehacks.   The lady who started this Genetic Lifehacks has an article that is called "Histamine Intolerance and genetics check your 23andme raw data".  What I did is I opened up Daniel's 23 and me results (again you had to have the health traits ordered not just the ancestry results to do this") and also had this webpage up at the same time (I toggled between the two).  The lady who created this has a list of links you can click on, in this article related to how histamine can be genetically influencing you, and you can click back and forth and see what your genetics can tell you about how you process histamine in your body (again if you look at just the standard 23 and me results you will not find this.  You have to go to this extra step to find this.   To no surprise I found out that Daniel's body has issues with processing histamine.  I looked at my mom's and my husbands results and I found the exact same thing.     What it is looks like is my children inherited  from both sides of our family genes that make histamine a big issue for our family.   So they got hit from both sides of our family genetically with histamine issues!  
    My husband has had tinnitus the past few years and I had come across an article a while back about how histamine can be a huge influence on tinnitus (ringing in the ear or other sounds).  My husbands tinnitus came out of now where and it is both ears.  For some people they get tinnitus because of loud sound exposure but this was not my husbands case and so we had a mystery on our hands as to why.  Well what I found out is that antihistamines (like Claritin or Zyrtec) they do not stop the histamine from being made they just block it.  As a matter of fact what I read is the longer you are on those kind of antihistamines the more histamine your body makes it is just being blocked but it can cause tinnitus in some people.    My husband has been on antihistamines since his 20s (he is now 53).  So we took him off those over the counter drugs and he started taking vitamin c, quercetin  (which is like a natural antihistamine) , zinc, nac and guess what his tinnitus has gone down significantly.  It is not completely gone (I think it is because he still eats a high histamine diet and also there are foods/beverages that block the enzymes that break down histamines (like coffee and he drinks a lot of it).  
    The other thing I want to mention and I cannot stress this enough is research hidden names of MSG!  My son and i both  REALLY react with our nervous systems to MSG and it is not just Chinese food.  It is in so many products.  Daniels tics would be way worse even with a little amount of MSG.   MSG is a frustrating thing because it has to do with the molecules being excitatory.   It is hidden under different names because what these food manufactures do is they take a food, like yeast or soy, and they cook it for a long period of time to enhance the flavor.  In the midst of that long cooking process the molecules change to an exictatory state.  .  So when you see a product like "autolyzed yeast" or "hydrolyzed soy protein"  they have an excitatory property in it for someone who has nervous system conditions.  Wihen Daniel's tics were really bad (about 10 years ago)  I did a ton of research on "hidden names of MSG" and we started avoiding those food (this also includes artificial sweeteners).  I also found that foods with high fructose syrup and food dyes (especially red) affected him and me too.  One time I ate a lot of Red Vines and my anxiety levels were off the charts.  
    So I know I put a lot of information out there.  There are doctors who specialize in histamine disorders (some call it Mass Cell Activation Disorder)  (like the Mensah Medical I went to). The 23 and me health traits with doing the link between that other website I told you about might give you a lot of clues too but just do some research on histamine.  I came across an scientific article last night when I typed in histamine and tourettes and it came up with this very complicated article about how histamine can be the driving force behind Tourettes.  Again this many be an answer for everyone by any means but it is definitely something worth looking into.  I really hope this can help someone out there in their quest to find answers.  What is so interesting to me is the other day I prayed and asked God to show me what was going on with my daughter (her migraines have been so bad) and this histamine issue is what came back up after I prayed.  That is when I started doing my research for her and it brought this thing full circle again).  God is so amazing to me!    
     
     
     
     
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    CarolynN got a reaction from hkginger in Im looking for information to help lessen my tics   
    Hello and welcome to the forum. I am so glad you have posted here. I am sure you will be real encouraged by so many people who have found help through doing things naturally. Meaning changing diets and using supplements. Here are some things I wanted to share with you.
     
    We have been dealing with tics with my son since he was 3. I have posted on here many times about all the supplements he is on. The only thing I can say is he is almost 9 and pretty much tic free now. He is heading into the peak time for tics for his age and with all of the supplements and diet change I truly believe his intestional track and liver are getting what they need now to help process out what he could not do by himself prior which was food chemicals (MSG, food dyes, high fructose corn syrup). It takes time for the body to heal once on the right supplements.
     
    I had put together my theory as to what was ultimately going on with my son's tics and why I thought Daniel was reacting to food chemicals a while back. Here is the link http://www.latitudes.org/forums/index.php?...mp;hl=sulfation and also some follow up links to this post http://www.latitudes.org/forums/index.php?...Carolyn+N\ and also http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .
     
    B6 has been a HUGE part of what helps Daniel. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. When Daniel's tics get going I always give him an additional 50 mg's for two to three days.
     
    The magnesium taurate has been very, very helpful too. The magnesium helps calm the nervous system. It is essential for a person with tics to get magnesium going in them. There are different forms of magnesium. You want to buy one that ends in "ate". For example magneiusm taurate, magnesium citrate, magnesium glycinate. The ones that end in "ate" absorb much better in the body. The other ones do not absorb very well at all.
     
    Speaking of the TS-Plus vitamin for Daniel it has helped him so much. He has been on it since he was 5. I did not realize how much it was helping him until I tried switching to a different product and within a month his tics came back full force. Another time I tried cutting his dose in half, just to save some money, and he seemed fine for a while. Then again I think his body became depleted of the vitamins and minerals, from not getting enough, and the tics have came back. So I realized I could not "cheat" and try to save money. He is on the recommended dose for his wieght now and doing great. It is an expensive product but well worth it. The biggest pain is it is so many vitamins for him to take but it is such a part of his life and he realizes now the benefit of the vitamins which makes it so much easier.
     
    Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row. I use Carlson brand glycine.
     
    Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 1,000 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But one primary reason is to lower histamine levels.
     
    Back to the NAC I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.
     
    Have you tried giving her Benadryl or some other anti-histamine to see if her tics reduce? I know I and many others have seen a reduction in tics with Benadryl. Some people, however, will have an increase in tics when taking it but not for most. My thought is if you see a reduction in tics you know that her histamine levels are elevated which more then likely they are elevated one way or another.
     
    The other thing that really helps is taking Epsom Salts baths. Use 2 cups of epsom salts in a bath and soak at least 20 minutes. I noticed with my son that I don't see a sudden reduction in tics after the bath it is usually a couple hours later.
     
    I hope this helps some. Don't get discouraged. I have read way to many testomonies of people that once they figure out their triggers (perhaps it is food chemical, dairy products, wheat, environmental chemcials like scented candles, new carpet, chlorine etc.) and get the right supplements their tics greatly are reduced. Your body is sending you a signal and now the detective work starts. One thing I did with my son is I kept food journals of what he ate. I would rate his tics that day (I would break up the day by morning and night) and assign a number from 1 to 10. I cannot tell you how much this helped me. Within a few months I started seeing the pattern of what was causing his tics.
     
    Have a great day and I pray you find answers real soon.
     
     
    Carolyn N.
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