20 replies to this topic

[Isabeau]

Hello everyone!

 

I was recently diagnosed with Mast Cell Activation Syndrome (MCAS) (where basically mast cells tend to be trigger happy and release granules, of which histamine seems to be the most problematic). I am super lucky, most of the things to do to get better are entirely within my control (a diet low in histamines, avoiding strenuous exercise, meditation, etc.) and already I am doing so much better! :D :D

 

However, the doctors tell there is no correlation between my cognitive symptoms and MCAS. According to them the act of being sick can make a person anxious and depressed but not this disease per say. This seems unlikely to me as outside of episodes I have, I am perfectly happy and far from anxious, those appear when there is a trigger.

 

For instance, weird enough, the shower is a huge trigger and after one I will suddenly have a lot of anxiety and brain fog. Certain foods will do the same thing and may also trigger overal body pain.

 

I do not know the brain well enough and I have come to my wits ends to try to explain properly how these things could be linked, and despite what the doctors tell me, the causality seems too direct to be dismissed.

 

Any theories would be greatly welcomed! I wish there was a monitor on my body like I have with my computer where I can tell what's going on with it, but alas no such luck, so Longecity seems my next best bet :P

[sthira]

Thanks. What does a diet low in histamines look like for you? And which foods trigger your anxiety?

[Isabeau]

I'm doing an histamine elimination diet at the moment so have not pinpointed yet with accuracy all the triggers. Chocolate so far seems to be the worst one. But certainly since I've been doing low histamine I've been improving incredibly fast. Meditation helps as well.

 

However what helped the most was stopping exercising. As a part of the MCAS, I suffer from exercise induced anaphylaxis and was exercising at least 40 minutes a day, which kept my levels of histamine very high. Now I do Tai-Chi which do not trigger it.

[BruceH]

Well those doctors were wrong about MCAS not directly causing cognitive symptoms. The top experts are well aware MCAS can cause brain fog. Prostaglandin D2 is one mast cell mediator known to cause severe brain fog. I think many other mast cell mediators can have major effects on the brain if they reach the brain in high enough doses. If you get brain inflammation from mast cell activation close enough to your brain then it will cause various brain dysfunction. High histamine foods give me headaches, brain fog, irritability, social anxiety and depression. Before I got on meds nearly every smell exposure would trigger head pressure and severe brain fog within 2 seconds. It was very clear-cut and I was not stressed or anxious I was instantly too out of it and brain fogged to feel much of any emotions.

 

Here's links to a publication and lecture by a top MCAS expert Dr. Maria Castells:

 

Look at Prostaglandin D2 in Table 1

http://www.clinicalt...0171-9/fulltext

 

Skip to 24m22s to hear her discuss brain fog from PGD2. Although she discusses it another time too sometime in the video.

 

 

Edited by BruceH, 26 February 2015 - 01:26 AM.

[mark365]

...then study HISTAMINE relentlessly

...understand its role in the body and how an excess can make it's presence known in your's

...because you are biochemically unique there are no rules regarding what you should or should not be experiencing and how an excess of HISTAMINE will express itself in your body/nervous system

[Isabeau]

BruceH, yes thank you that is exactly what I mean! THank you for posting the video, it is very informative. I'm having a brain fog moment so I'll have the luxury of watching it again for the first time in a few days, ahahahaha !

 

If it's not indiscreet, what meds are you on?

 

I'm actually fairly lucky, I was mostly asymptomatic my whole life but then started taking the birth control pill and it created a perfect storm from hell! Now I'm off them and apparently through a low histamine diet and other life adjustments, I'll be back to being mostly asymptomatic.

 

mark365, you could mot have phrased my thoughts better. I know it sounds silly but I HATE not knowing what goes on in my body. No, I have no control issues whatsoever Of course I'll never completely know but the closer I get the happier it will make me.

 

 

[boroda]

did you try any antihistamines? 

Edited by boroda, 01 March 2015 - 10:16 AM.

[Isabeau]

I occasionally take h1 and h2 antihistamines. They'll stop my pruritus and help with the exercise induced anaphylaxis when it isn't too bad. Maybe if I took them long term they'd reduce the histamine enough that it could bring down the brain fog and anxiety but I'd rather not take any medication long term if I can avoid it and I've read that long term antihistamine use can trigger IgE allergies and and food sensitivities.

 

So before I go down that road, I'm trying the more natural approach: low-histamine diet, meditation and supplements like Quercetin to stabilize the mast cells and holy basil, as some studies show that it is just as efficient as Zantac on the H2 receptor without messing with stomach acid.

[boroda]

Do you have Amanita Muscaria growing in your area? It is powerful antihistamine. I once have taken 500mg of Niacin after A. Muscaria - and how surprised I was when I got almost no flush from Niacin. Not to mention all other interesting things Amanita does. Probably worth a try.

Edited by boroda, 02 March 2015 - 04:25 AM.

[Isabeau]

I had never heard of it, I'll read up on it. Niacin is like kryptonite to me, if I take a high dose I immediately have crazy anxiety.

 

I'm currently reading on H3 natural antagonists, like yamoa and kutaj. As mark365 mentionned, I want to know more about histamine, it's mechanisms are very obscure to me beyond common knowledge.

 

Thanks for letting me know about this, I'm intrigued!

[boroda]

PM me if you need more details, I'm interested in your results. Amanita is my passion and I believe it has great healing potential.

[mark365]

Niacin is a notorious HISTAMINE releaser. There's a doc,Harold N., M.D. Levinson, who's been curing phobia's and anxiety disorders for 40 years with anti-histamines. You can buy his books used and cheap on Amazon. Anti-histamines aren't the route I would choose but I mention them to make a point.

[Isabeau]

Mark365, yes I used it as a home made test to verify my theory that I had histamine issues, before I was able to find a doctor that would prescribe the tests. I usually take a daily sublingual vitamin B complex, I couldn't touch it for a few days afterwards as it was a trigger. Now it's back to normal.

 

All of this is so fascinating!

 

boroda, will do, I couldn't find much pertinent info on the subject, unfortunately.

[turnoffthelites]

Hey mark. I am interested in more about controlling histamine. Can you point me to any resources you recommend? Thanks

[Isabeau]

It depends what you want to control. I.e. if you have mast cells issues (either mast cells proliferation or mast cells degranulating too easily), histamine intolerance (usually because of a DAO enzyme deficiency) or you naturally have elevated histamine (histadelia).

 

If you can specify, it'll be easier to pinpoint you to good resources.

 

For sure though, the first thing to do is to modify your eating habits to exclude high histamine foods and include anti-inflammatory ones.

 

There are no two websites who really agree on the histamine rich foods though, so you'll have to test them yourself. The most complete list I found was here.

And sometimes it is worth it to include histamine rich foods like avocado because they're just so good for you

[Isabeau]

Two good websites to start at are :

 

http://low-histamine.com

http://thelowhistaminechef.com/

 

The latter has a lot of information amidst a LOT of anectodal text.

[mark365]

Just type in the annoyance you're curious about and the word "Histamine". That'll lead you to all kinds of interesting sites that'll explain histamine and it's role in that phenomena.

For instance, "migraine histamine" or "eczema histamine" or "anxiety histamine" or "vertigo histamine". 

The array of symptoms HISTAMINE can be associated with is vast. Study the enzymes that influence histamine levels in the body and how you can influence those enzymes, if at all. I don't want to tell you how to study because everyone learns in their own unique way. I do recommend you come to understand the (profound) role HISTAMINE plays in your physical and emotional well-being and/or unwell-being. Be well.

[Isabeau]

 I do recommend you come to understand the (profound) role HISTAMINE plays in your physical and emotional well-being and/or unwell-being. Be well.

 

So true! I am convinced we'll see in the years to come a lot more research into histamine and the plethora of effects it has on health issues. Since I've been dabling into this I've recognized histamine issues in a lot of people around me and a friend of mine who was diagnosed with fibromyalgia has now been diagnosed with MCAS as well.

[eon]

I believe the antihistamine called hydroxyzine is known as an anti anxiety and used for it off label. I believe it does cause other problems though. Benadryl is another antihistamine known to let you forgot bad memories, so it messes with one's memory, which can be bad unless all your memories are actually negative. So which route would you choose then?

 

I didn't know that about Niacin. I just like the flush. I like that it is a vasodilator. I think it's great for hair, eyes, skin, and brain as well. There is a book about Niacin and its uses. It's also good for lowering cholesterol. I only take 100 mg a day, though I'm off cycle from it. I've used 500mg dosage before that was time-release.

 

 

Niacin is a notorious HISTAMINE releaser. There's a doc,Harold N., M.D. Levinson, who's been curing phobia's and anxiety disorders for 40 years with anti-histamines. You can buy his books used and cheap on Amazon. Anti-histamines aren't the route I would choose but I mention them to make a point.

 

Edited by eon, 06 March 2015 - 11:03 PM.

[eon]

Isn't Amanita poisonous mushroom?

 

Do you have Amanita Muscaria growing in your area? It is powerful antihistamine. I once have taken 500mg of Niacin after A. Muscaria - and how surprised I was when I got almost no flush from Niacin. Not to mention all other interesting things Amanita does. Probably worth a try.

 

[Jiminy Glick]

Vitamin C, salt, and quercetin are all natural anti-histamines, a combination of all 3 would be good. Mix them all with water or another drink.