Systemic Mast Cell Disease:

[justy]

Hi, guys. @Palmer7 mentioned mast cell dysfunction when I was talking about my weird symptom of bulging veins in my hands and feet the evening, with pain in the hands and arms. Apparently, Yasmina Ykelenstam was giving a talk about mast cell overactivation, and she specifically mentioned this symptom as being a sign of high mast cell activation / high histamine levels.

What the hey, when it happened again this evening, I took some diphenhydramine (a whole one, because they were capsules, not pills).

I got a tingy, cold feeling, my mouth tasted like metal, and I felt a little dizzier and less centered (it felt like I weighed less than usual). The pain at the back of my neck diminished, but it just seemed to travel to the sides of my head. Most symptoms went away or significantly diminished in a half an hour... and my hands were still bulgy like some horror movie monster's.

So - either this doesn't work, this doesn't work at this dose, this is the wrong type of histamine blocker, or high histamine is not what's wrong with me.

I'm afraid you won't be able to tell from one antihistamine if this is the issue or not. Many people with mastc ell issues (including me) find they need a number of different meds to control symptoms and some people may find one type of anti H makes them worse ie they are sensitive to it or its ingredients and may need to spend while finding the right combo of meds, which usually involves an H1 blocker (2nd gen are best as non drowsy like loratidine or cetirizine) AND an H2 blocker like Zantac AND a mast cell stabiliser (Quercetin is a natural one I think) Even then the meds may need to be taken at an off label higher dosage - for example I take two 10mg loratidine a day and have been advised I can take up to 4 times the normal dose (this is not safe for all antihistamines just certain ones)

But then again this may not be your issue...

Science is so indefinite.


-J

 

[JaimeS]

What is the metallic taste about? It was one of my first symptoms but I was always afraid to ask a doctor about it - I figured it would lead straight to a psych diagnosis.

I wouldn't worry about that, @SDSue - a metallic taste is a very common side-effect in medicine and is experienced by a lot of people.

There are also a wide variety of drugs that can trigger dysgeusia, including zopiclone,[26] H1-antihistamines, such as azelastine and emedastine.[27] Approximately 250 drugs affect taste.

From my friend and yours, Wikipedia.

-J

 

[SDSue]

Thanks so much, @ahmo - I’ve got some reading to do. I did notice frozen shoulder on the list of symptoms, which is curious. Often when my overall symptoms flare badly, my frozen shoulder acts up, too. I knew it was inflammation gone wild from my brain to my toes, but never understood the source of that inflammation. Could it be mast cells degranulation?

I’ve been looking into starting a low histamine diet, and in the process have realized that about 75% of what I eat is high in histamine. To be honest, I’m completely overwhelmed right now. It’s definitely worth learning if it has a chance of helping my dysautonomia.

Theoharides is a pharmacologist and mast cell expert, w/ many papers and vids available at mastcellmaster.com.
He's the one to make the link with mast cells in hippocampus and autism, neurological symptoms. I use his product, Neuroprotek, when my system's really flaring, or brain's really on fire.

I used Neuroprotek for about 3 months. At first it helped (?) with my brain pain, but when I stopped, I noticed no increase in symptoms. So I’m thinking I need to get a handle on my diet first, as I’m sure that was a big confounder? I also wonder if I’d be better off with ketotifen?

Do you really just take one capsule when you flare? It sounds like you get the same brain pain that I get - fiery, inflamed, buzzing.

I've found carrots and green tea to be very powerful antioxidants for me. This started a few months ago, thankfully my need for both as decreased. But when I got that telltale taste, I'd eat a couple carrots and quench it. I'm also using quite an array of other antioxidants, including astaxanthine, resveratrol, ALCAR....The first antioxidants on his list are AdenoB12 and folate, though I don't know if theyr'e in order of significance.

Are you saying that antioxidants help stabilize mast cells?

As for chaos, my reply is feeling the same lol. No worries!

I wouldn't worry about that, @SDSue - a metallic taste is a very common side-effect in medicine and is experienced by a lot of people.

Good to know the orderlies won’t be stopping by with a straight jacket for me anytime soon!

 

[ahmo]

Often when my overall symptoms flare badly, my frozen shoulder acts up, too. I knew it was inflammation gone wild from my brain to my toes, but never understood the source of that inflammation. Could it be mast cells degranulation?

I haven't researched frozen shoulder since working with methylation, mast cells. I've had both shoulders, some years apart, w/ this problem, and one of them remains quite vulnerable. My understanding is that it's considered an autoimmune problem, but maybe opinions have changed about this. I'll link Theoharides MC vid. The more I've learned about MC, the more it seems this is responsible for many and varied symptoms. I think the mast cell blog I linked, particularly the 2 papers she wrote re Canary, has a pretty complete description. Mast cells are in collagen, connective tissue...my life before ME had significant connective tissue issues, which is how I classified my low back inflammations. More recently, I've found there's a direct link between adrenal stress and low back inflammation...and adrenal stress also pushes MC reactions.

If you do have autoimmune issues, low dose naltrexone iw worth a try. I've had fantastic results with it, most noticeable in increased stamina. People manage MS, Parkinsons, cancer, lot's of other problems w/ LDN. There's a pr forum, also yahoo forums.

I’ve been looking into starting a low histamine diet, and in the process have realized that about 75% of what I eat is high in histamine.

I used Neuroprotek for about 3 months. At first it helped (?) with my brain pain, but when I stopped, I noticed no increase in symptoms. So I’m thinking I need to get a handle on my diet first, as I’m sure that was a big confounder? I also wonder if I’d be better off with ketotifen?

Absolutely diet first. Let's se, MC release histamine, and food contributes histamines, and problems w/ DAO snp/enzyme contributes by being inefficient at breaking down histamine. If you're truly eating a high histamine diet, you're adding to the histamine bucket. When it's too full, you get histamine reactions.

I've had excellent results w/ royal jelly as MC stabilizer. Also rutin as antihistamine, acts almost immediately for me. Quercetin is another, but it's high sulfur, I think, and I switched from quercetin to mangosteen. Quercetin is found in green apples, and is a component of Neuroprotek. I don't know what ketotifen is.

Do you really just take one capsule when you flare? It sounds like you get the same brain pain that I get - fiery, inflamed, buzzing.

Initially I was using about 2/day, AM/PM. That was about a year ago. I've shifted a number of things since then, and now frequently self-test + for only 1/day. If I wake in the night with a mind that won't quit, I've taken a NP and things quiet within 15 minutes. Amazing.

Are you saying that antioxidants help stabilize mast cells?

This has been my experience. My MC symptoms seem to be mostly skin: ulcerations in nose, ears, crystal-like flares on eyelids, blood blisters in mouth. There's a very direct relationship between my adrenal health and MC flares. The antioxidants relieve the adrenal stress. This statement from Martin Pall, ties MC activity directly to increased NO, for which he recommends antioxidants.
mast cells which release histamine are activated by both nitric oxide and vanilloid stimulation (Chapter 7) and may therefore be part of the cycle mechanism (NO/ONOO mechanism)

The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044
http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf
http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf

Mastocytosis with Theoharis C. Theoharides,
http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q
http://www.lowdosenaltrexone.org/index.htm
http://www.lowdosenaltrexone.org/index.htm

https://sites.google.com/site/dudleyslowdosenaltrexonesites/

 

[SDSue]

@ahmo I really appreciate all the references! Thanks.

 

[ahmo]

Just remembered to remark on something else, which may or may not be relevant. FMN form of Vit B2 is something I've been using for less than 2 weeks. It's dramatically reduced my need for antioxidants. It seems to be especially useful for MAO snps, though I don't know if it's limited to that.

http://forums.phoenixrising.me/index.php?threads/is-taking-bh4-a-problem-for-comt.36997/#post-588606

 

[ahmo]

Not sure how I found myself back on this thread, but I'll add to my comment re FMN. It has essentially eliminated my need for histamine and mast cell supps.It's been days now that I've needed neither. I wrote a blog about FMN. That was about a week ago. It seems even more remarkable now. For the first time in 3 years, since I uncovered my histamine issue, I'm eating a spoonful of yogurt or sauerkraut daily.

 

[JPV]

Where the hell is @nanonug? I miss his valuable contributions to the forum!

 

[Sushi]

Where the hell is @nanonug? I miss his valuable contributions to the forum!

You might try sending him a conversation and ask him

Where the hell is @nanonug?

as most members have it set to get an email when someone sends them a conversation.