Hopeful things to share (what I found that helped)

[CarolynN]

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!    

 

 

 

 

[MLee]

This is such wonderful information!

thank you!

[CMC]

Thank you for taking the time to post and help others. We appreciate you!

[ahmoy44]

Thank you so much for taking the time to come back and give such a detailed account of what’s helped you and all your family. It’s great to hear a success story! I’m starting to suspect histamine is playing more of a role in my daughters tics and possibly ties together a lot of the individual areas I’ve been looking at. Your post gives me lots to go after. Xx

[vvny]

Carolyn, 

 

This is great information and I was looking into histamine for my son who is 11 and has really bad tics going on with stuffy nose every night. He is already on B6, NAC, Magnesium, zinc and i will be adding in the quercetin. He is suffering a lot with the vocal tics all day and I really dont know what else to do for him. Any pointers on what helped your son with vocal tic flare ups ? 

[Emmer]

Hi Carolyn,

My daughter and I have been reading some of your posts from when Daniel was young. My grandson, Benji, age 8, has been struggling with tics for over a year now. We think "histamine intolerance" might be what he is dealing with too. We had already been following the Feingold diet because his mother was as a child and still is very affected by artificial colors, sweeteners and preservatives. The Tics do seem to be worse during high pollen seasons. This summer he also became much worse during swimming lessons but responded wonderfully from epsome salt baths and lotions as you suggested! We've introduced NAC which seems to help but are having trouble including the Potassium Bicarbonate which you said made a great difference. Do you remember what ratio of NAC to Potassium Bicarbonate  you used? And how did you give it to Daniel? Was it in juice or yogurt or some other way? The fizzing aspect of the bicarbonate makes it a bit of a challenge for Benji but I notice it does not fizz unless the NAC is present. Is it possible to give it separately or should it be mixed together? I hope you don't mind my asking. Benji is being seen by both a Pedeatrician who is very supportive of using natural remedies and a Naturopath - but your earlier comments have been so helpful! However, we are still working on finding the right combination for him.

Thank you! Merryann

[Nate]

I hope this helps someone out there. After many years of horrible (yes, horrible) tics, sensory issues, and emotional instability my daughter is basically tic free, happy, and calm. We tried so many things that we read here and elsewhere. From supplements, fragrances, different diets including gluten and casein free, throwing out furniture and decor, we left nothing unturned. What have we found was the culprit? Plant based foods.  She grew up with a diet primarily comprised of organic fruits, veggies, and meat. Had white sugar the first time about 1.5 years ago. We cleaned with vinegar. She drank nothing but water. Her diet was "perfect" yet our lives became so stressful.  Now she is perfectly normal as long as we severely limit the fruits and veggies.  Raw milk is a miracle drink. If she's emotional or having slight tics due to too much plant food then milk saves the day. If we go somewhere with essential oils being diffused then we will pay the price for the rest of the day.  I know this sounds crazy, but if you are stressed and tried everything you know to try it can't hurt to cut out plant foods for a couple days...meat, bread, peanut butter, raw milk work for us. Obviously you still need to include some plant food for nutrition long term.

Blessings,

Nate

 

[LordChallen]

Thank you, CarolynN.

It's some 3 years after your wrote this, but it's hitting the right spots for me.

My gut has been nagging me that my daughter (with PANDAS) OCD gets worse when she missing her Claritin. She is on two 10mg doses a day. Her allergies are so bad. I buy Puffs Plus but the large 8 packs every few weeks. I've never seen anyone go through that a many tissues. I hate that she is on two Claritin a day (doctors orders) and she has been doing it for nearly 10 years. I don't know if you have heard of the MTHFR genes, but she had both mutations. We try to limit the about Folic Acid she takes, but it is tough. Everything has it.