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I am hoping that Dr. Diana can translate my intuitive thoughts regarding excitotoxins effects on the neuro system and especially headaches. Many years ago when I was combating headaches I met with a biochemist at Michigan State Univ. He explained to me how food labeling wasn’t very clear at that time and that even though I was diligently RADICALY avoiding MSG. I was still getting doses in foods. Now the information about where MSG hides and in what chemical derivatives etc is easy to find.It was new then. I went on a research kick…to the best of my abilities…I have a Liberal Arts background..so I knew where too look, but understanding the Science was tough. I intuited my way through..Beefore I knew about EDS I was able to see symptoms that looked like ADHD in 3 generations of tall thin very bright sometimes Asperger like boys and girls me being the tallest who started puberty late, had horrible migraines, anxiety although not debilitating..more like wound up, and lots of menstral problems. When our grandfather became ill with Parkinsons is when I really began to put two and two together.An Aunt told me that all 6 of his siblings and his mother had some kind of tremors in their rt hand.My grandfather did not show tremors until the Parkinsons. Everyone of the kids in the family who reacted to MSG had the same “make up”. They were wound, very bright kids,usually tall and thin.I figured we must have overactive nervous sytems.. I started reading studies about the role of excitotoxins on the brain. I suspected that my family had lousy blood brain barriers so MSG could make us ill. I think this fits in somehow with the EDS and I suspect Dr. Diana can explain it in a simple user friendly way. By the time I had my son 22 yrs ago I knew how important it was to make sure we were diet aware, still by age 17 he was having mild tremoring in his hands…I now suspect that my grandfather may have been misdiagnosed and actually had EDS with mast cell issues late in life..just pondering..thanks for the space to think this out.
Hi Momcat7, Boy, you give me WAY more credit than I deserve! It sounds like you, my friend, are the expert on this, not me! Having said that, I was right there with you on the familial trends of late-onset puberty, migraines, anxiety, etc. Yes — those are VERY typical in the EDS family. I believe, like you, that mast cell proliferation and lousy blood brain barriers are to blame for many of our issues.
Where I’m not sure I follow is the MSG thing. Are you saying that you believe MSG breaks down into L-glutamate (the excitotoxin in the brain)? IF that is your question, my answer is I don’t know! It’s an interesting thought, but as far as I know, there has only been anecdotal evidence of this. (Please correct me if I’m wrong). With our lousy BBB’s, mast cells and likely hydrocephalus, I don’t think we need to look further to find reasons for our symptoms — including tremors. But knowing that mast cell triggers involve some funky stuff, I could easily see how MSG may be a mast cell trigger and should be avoided.
That’s probably no answer (you get what you pay for. ha).Thanks for brainstorming! 🙂See, That’s where I get in trouble. You need a detail. Msg turns into ? I’ll have to go with the bigger picture that I do understand. lol. Monosodium glutamate, and nutrasweet/ aspartame (oops those might be brand names) have properties that are called excitotoxins. These things go in and effect brain neural cells like jiffy popcorn kernels on the campfire.( Sorry I think in pictures!) The neural cells excite themselves to death. EXCITOTOXINS THE TASTE THAT KILLS is a book that was written by a DR. Dianalike doctor who’s name I can’t remember. His father had Parkinsons and he became driven like Dr. Diana to research the disease connections that effected his family. The book made the connection for me regarding brain fog after eating. Then I learned that Mayo clinic was recommending that MS patients and I think stroke or neuro patients avoid the sweetners in diet foods. My son and I have nearly immediate neurological symptoms if we ingest a “diet” food. My balance goes immediately. His tremors worsen and I cannot work through a number based or direction involved question. It is as if that part of my brain has been disconnected. It used to be so bad that we would get severe headaches and I would have trouble breathing. I almost always had flushing and hives. My son had agitated irritated cranky behavior..very unlike him. Very much like I can get if my sugar gets too low.SOOOOOO as I have begun exploring mast cell issues I was wondering if there was a connection. Your word “trigger” was perfect. I’m not sure who to ask or how to find out. This is where I loose it..those scientific details..I’m always missing one piece of the details so can’t ask a direct simple question. If you can translate the question for me I will start digging!Thanks again for offering the space for a research junkie like me to brainstorm.
if you and family are sensitive to MSG… maybe also look into avoiding foods that naturally have MSG in them – afaik that includes things like broccoli and chicken for example
re tremors- ime sometimes … they can have a v simple, but all too often overlooked/disregarded cause- posture and ‘holding unnecessary tension’
I’ve had episodes of tremors in arms/hands and loosening shoulder/neck/arm muscle tension and correcting posture can stop them- same for my mum who got dxed with “old age tremors”… yet when she hasnt got her shoulders ’round her ears’… no tremor…
pity enough due to in part our proprioception issues we have a tendency to ‘grip/hold/do’ things with far too much muscle tension- so doing things in a ‘normal/fairly relaxed’ way is quite hard ‘brain work’ (we have to ‘consciously’ do things rather than ‘just do’)
xxgNewbie We are extremely careful about natural occurring high levels of MSG. I show significant allergies to the broccoli and nightshade veggie groups among others. Turkey is a huge problem..Organic chicken not much. Mushrooms are okay because we don’t have large amounts when we do eat them. I would say diet is the biggest challenge about my life with EDS. From early childhood it was clear that what I ate could be a problem..I now think it’s not the what as much as
just my whole leaky gut and endocrine problems. My diabetes and early life hypoglycemia seem to complicate the food issues beyond..allergies.We also have noticed that my son who has significant scoliosis and skeletal problems can have tremors when he is cramping up etc. I do not ever have tremoring. I do have balance problems that stem from similar muscle tension issues. I have an “stop and chill” routine. Every two hours I stop whatever I am doing and do some relaxation breathing..just to keep from tightening up. I do have to over compensate for my looseness so then I have to recompensate for that!
There is a wealth of information in this brain trust! My tremors are worse in the morning, which I attributed to my poor drainage of CSF and veinous blood out of my brain causing my head pressure to increase in the supine position. I’m also on xanax and diamox (both are listed as treatments for tremor. Amazing.) So those likely help, too.
With mast cell disease, on the mastocytosis society web page, they have a list of “triggers” and MSG and coloring and flavorings are right there, too. So mast cells may be involved. There’s some evidence that artificial sweeteners mess with our blood sugar, too, so I’ll throw that in the pot. Finally, some of these artificial sweeteners increase acidity in our bodies, which isn’t healthy, but it prevents diamox from taking pressure off of our brains if our CO2 dips below 22, which it can do quite easily.
So for now, I think most of us try to keep sweeteners down to a minimum, ditto MSG. This deserves research FOR SURE. 🙂wow reading all of this really aligns with some of my own discoveries…I have had issues with food additives for some time now. I can have a sip of something with artificial sweetener in it (unknowing) and I can tell you instantly as my stomach feels like I just ate a large rock. MSG can have me running to the bathroom in under 10 min. I have a friend who has been struggling for yrs with sililar symptoms as me and I finally said to her a few weeks ago that I am convinced she has EDS too! I have been put on an acid reducer because I was having chronic hiccups. I also take zertec regularly because I just seemed to feel better who knew!!! I feel more POTSY when I skip it. I just thought I was having a bad day! I do have to say I am also very affected by pressure systems that come through particularly drastic changes. I have recently gone on ritalin to help with my fatigue….It has boosted my energy some but mostly helped with my myofacial pain. when that happened it really made me start to look at all my symptoms a little differently.
Hi. New here. I recently (finally) found out that because I’m allergic to Formaldehyde I have to avoid Aspartame. But I was already pretty good about avoiding it because I suspected it made me sick. Now I’m very careful.
I get tremors too, and never had any idea why, so you have all given me something to think about. I suspect it does have to do with somehow overcompensating when holding things. A couple of times I’ve also had the delighful experience of reaching for my paper cup at Starbucks and accidentially crushing it, while full, which makes your drink explode very dramatically. The second time if happened I was being extremely careful to pick it up gently, but it happened again anyway. I couldn’t judge the force of my grip. Maybe that’s kind of like clutching things too tightly and ending up with tremors afterward.
Mary
I wish there was a ‘like’ button after each comment because I can relate to all of you. I’m just learning about the mast cell activation issues and the symptoms of histaminosis. I think everything you all wrote seems to all be connected to this issue.
I can’t touch artificial sweeteners, MSGs, nitrates or nitrites and many other triggers. I sometimes have to be careful with nightshades but inconsistencies with symptoms is common for mastocytosis.
I have been trying to figure out the chicken thing for years. I know when I eat chicken I may have an unbearable itching in my hands and maybe my feet. I know now that it must have sat for a while after it was cooked (refrigerated or not) and the histamines built up in it. That can happen with any meat.I had severe reactive hypoglycemia my entire life. I’m not sure how it connects but I suspect it does. The doctors have been trying to figure it out for decades and are still amazed. One just had me repeat my 5 hour glucose tolerance test that I had in 1990 to see if it has changed. I don’t have the results yet but I crashed 3.5 hours after drinking the glucose just like I did in 1990. I was so dizzy I could hardly walk and my hand was shaking so bad I’m not sure how she got the needle in there. They used up all my veins and I’m still very bruised from it. I suspect my sugar dropped to about 30 like before. They didn’t check my urine this time but last time I was dumping sugar in my urine when my blood sugar was already too low and my insulin numbers were still climbing. That is what amazes the doctor and I think it is a result of a dysfunctional autonomic nervous system not regulating my body correctly and over reacting to a stimulus – sugar.
I shake when my sugar is not low sometimes too from many other triggers.
It’s nice to be figuring a lot of this out after 38 years of mysterious issues.I am hoping that Dr. Diana can translate my intuitive thoughts regarding excitotoxins effects on the neuro system and especially headaches. RADICALY avoiding MSG.
Guess WHAT, my friend? Many food additives can cause mast cell degranulation — the worst culprit? MSG. I kid you not. I thought you’d want to know! 🙂 Diana
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