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Reverse-engineering Mast Cell Issue? (MCAS, MCAD, ACV apple cider vinegar, ketotifen, bicarbonate)

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I've read so much insightful theory, wisdom, and healing on this forum, I don't know how it's taken me a year and a half to post! That's how long I was dealing with this specific issue without understanding it, and I just discovered some effective management for it, so it's time for me to share. I've tried to include thorough descriptions and keywords, since what helped me on this forum was finding all the random pieces of data and witnessing how people had connected them before me.

I'm very solutions-oriented and have been using my health and symptoms as a testing ground. I am interested in approaching this from a perspective of "reverse engineering" what happened to me. My hard-headed logic is: there was a specific event that caused it, which points to specific faults caused from that event that can be fixed. (Though I know health is never that simple. =) If I can find a fix, maybe it can point to solutions for others too.

Here's a rundown of my history.

Mast Cell Activation that manifests often and specifically as:
  • heavy, sore, tingling, BURNING eyes
  • brain fog, confusion, dull thinking, short attention span
  • "fatigue" but sleep doesn't help, unless I'm at the tail end of the symptoms and it acts to "clear" it up. (I figure the fatigue is partially the body confused by the eye symptoms, partially energy dysfunction.)
  • apathy (seemingly both because of bio-chemical changes and my mood deflating from having to deal with these symptoms; occasionally, I can maintain my good mood)
  • Symptoms typically last 24-52 hours.
I discovered this was a mast cell reaction by majorly clearing these symptoms with ketotifen eye drops in 45-90 minutes.

Triggers:
  • Various foods, it's almost like nothing is safe. Sometimes something is okay one day, and a trigger the next.
    • Possibly due to the histamine bucket.
    • Some specifics I'm aware of: soda, sugar, milkshakes, grapefruit, and an assortment of other foods that seem to have bread/gluten/yeast/wheat as a factor. Grapefruit was the weirdest immediate-reaction I had, but makes sense in terms of histamine.
    • Citrus in general does not bother me.
  • Paint.
    • My bedroom was painted last summer and I thought it had aired out enough after a day, so I slept in it. Woke up with a horrendous sore throat that devolved into fatigue, stuffy nose, and body aches like I had the flu.
  • Burned house.
    • I once walked through a house that had a major fire long before I visited. Must've been the chemicals that triggered me. I didn't exactly have the burning eye symptom, but my mind and mood went a little haywire, and this caused me to investigate MTHFR more deeply.
  • Stress, at least sometimes.
    • A few weeks ago I had a super emotional day and didn't eat until dinner. The emotional moment occurred in the afternoon, and I started to feel my eyes burn before dinner.
    • I've read evidence of stress being a major trigger for mast cells.

Management/Treatment:
  • 90-100% effective: Ketotifen eye drops — I discovered these one week ago and this is the FIRST relief I've had within an hour among everything I've tried! This is heaven to me right now.
    • I've taken cetirizine, loratadine, and diphenhydramine for seasonal allergies before with no effect on symptoms.
  • 25-75% effective: mixing baking soda into lukewarm water and dripping it onto my eyes. Also, you're not supposed to put baking powder in your eyes, but when I discovered the bicarbonate-eye connection I didn't realize this at first and used baking powder. I don't use bicarbonate in my eyes anymore, but when I did it seemed baking powder was a little more effective (though the idea of adding corn starch to my eyes is not appealing).
    • This solution definitely helped, but didn't completely take away symptoms. In my opinion: it's worth trying if you are suffering similar symptoms and don't have access to eye drops but use baking soda, not baking powder except at your own discretion. I don't want to start a dumb trend on the internet people butting baking powder in their eyes.
  • Probably effective: supplementing D3 and other mast cell stabilizers (quercetin, alpha lipoic acid).
    • I have a chronic D3 deficiency that I did not take seriously until this last week when I learned it was a mast cell stabilizer. I suspect my deficiency is related to the VDR gene variant I have.
    • I'm eager to see what happens after I fill up on D3 after a period of time.
  • Potentially effective: 1:2 mix of potassium bicarbonate to sodium bicarbonate (baking soda).
    • I think it works, but I need to test more. The first time I had too much and it gave me alkalosis ("weak stomach" feeling, arm muscle tremors). This bicarbonate mix is a natural antihistamine that I discovered.
    • I personally add a slice of lemon first, then let the bicarbonates fizzle on it before adding water. I read this somewhere when I discovered taking sodium bicarbonate + lemon to help lower body acidity (not sure how helpful it is for that though, it probably lowers stomach acid more than anything).
  • To be determined: I just got two supplements from Seeking Health: HistaminX and Histamine Block.
    • One's like an antihistamine, the other provides DAO enzymes to process histamine in the gut.
    • I will test them when I can with my triggers (particularly my oh-so-bad but favorite strawberry milkshake from McDonalds).

What hasn't worked:
  • Gel eye drops, when I was avoiding preservatives.
  • Until discovering mast cells I treated my symptoms under the hypothesis of liver candida + detox deficiencies because I have MTHFR 677 heterozygous and a handful of other variants, and the paint and burned house seemed to be formaldehyde / acetaldehyde/toxin triggers.
    • I tried tons of supplements to support detoxing with no noticeable effects. A couple times I reduced the symptom duration to a single day, I think because I started adding alpha lipoic acid and quercetin to my cocktail, both mast cell stabilizers.
    • But nothing worked like the ketotifen eye drops.
  • Treating leaky gut.
    • For about 4 of the last 6 months, I've been having shakes made from Garden of Life's vanilla chai meal replacement powder, and for the last two months I've been taking Dr Axe's Gut Health along with probiotics, reishi, and glutamine.
    • This shake must be the most raw ingredients I've had in my diet ever in my life, so I expect it's very helpful. I'm not saying healing my gut hasn't helped, as I believe it has, but it did not solve the symptom set and I still have various foods trigger the symptoms.
    • However, I had a mediocre report back from a uBiome microbiome test, so my efforts may be biasing me to thinking I'm better off than I am.
  • Treating the symptoms as acidosis.
    • One glaring trigger I had was when I had no symptoms for a month (Feb-March 2018, eating pretty clean + shakes everyday) and then drank 24 ounces of "natural" soda because I was super stressed and thought "my symptoms have been gone, I'm all good!" The hangover I had was way worse than from drinking alcohol, it was actually only a few levels away from the massive paint reaction that felt like the flu.
    • This taught me about the sugar-acid connection (my eyes feel "acidic" during symptoms), and also made me think about how I craved Essentia's super-alkaline water, which I'd often buy before going on a hike.
    • The sugar trigger also made me consider diabetes but normal lab work panels come back fine and I was never tested further.

Random Medical History:
  • I'm a 26 year old male.
  • Aside from these mast cell symptoms, I've never felt better.
    • I have vigorous energy, I've healed a lot of my emotional issues, and getting tired in the afternoons is only every few days (used to be every day).
    • This is what makes me think I don't have anything else major underlying the mast cell activations at this point.
  • Though, I discovered I get post-exertional malaise (PEM) pretty easily.
    • I did a ton of walking a couple months ago and it gave me very sensitive skin, I believe it's called alloydynia is what it's called.I felt like I had gotten sick and needed to stay under warm blankets, even in the heat. Touching my skin hurt.
  • My blood work always looks fine, aside from:
    • Cholesterol is usually a bit high if I don't make sure to eat fairly well. (I had too much take-out at my old work.)
    • D3 is always low, unless I supplement.
    • Liver enzymes are always low, which "isn't a problem" but still seem like a signal to me in some way I cannot understand.
    • Unfortunately I was never tested for mast cell chemicals / tryptase, and blood work isn't accessible to me right now.
  • I do not have Sjrogen's syndrome, which could cause similar symptoms. Tested March 2018.
  • B12 deficiency in autumn 2010, linked to being mis-prescribed ciprofloxacin during summer 2010 (an antibiotic that likely decimated my already-iffy gut flora).
    • The deficiency gave me insomnia and depression.
    • During cipro I got a phototoxicity sunburn, but no other effects aside from probably flora-decimation.
  • For several months I depended on diphenhydramine to get to sleep. It helped when nothing else did.
    • I wonder if that says anything in light of ketotifen helping me.
    • Eventually I started taking methyl-B12 instead of cyano-B12 and that was the first night I felt tired since taking cipro. Methyl-B12 healed that deficiency.
    • I've never had a B12 deficiency again that I know of (I've been re-tested over the years).
  • Used to get really tired and moody in the afternoons, which was a main reason for starting the the liver/gallbladder flush I mention below.
    • Sometimes food still makes me need a nap, but I can push through if I have to without getting too bad in terms of mood or energy.
  • Was generally unstable with my moods until about one year ago, and defaulted to anger in many cases.
    • I have since healed several trauma points that have reduced most mental negativity, but I believe in my past I did have chemical and nutrient imbalances, and I experimented with several supplements based off books like the Mood Cure and other similar resources.
  • Blood pressure is usually normal to a little high.
  • I have skipped beats, sometimes with triggers, sometimes with none.
    • The skipped beats started in mid 2013 during a period of intense stress.
  • Since that period of 2013 stress, my chest often feels a little tight while my abdomen feels stressed, and I have shortness of breath (but no asthma … unless this is a form of asthma??).
    • I used to think caffeine caused this "energy forced to the head" anxious sensation, but I think my abdomen is tight from some sort of emotional trauma embodied in my muscles/cells (or that's what it seems like). My abdomen holds itself so tight for no clear reason, except that my posture needs to get better.
    • While I don't get B12-deficiency-type insomnia anymore, sometimes I keep myself up with an active mind (not negative anymore, just active), and it's related to this sensation of energy being forced upward into my head, out of my lower body.

The Event:
Now, what may be unique in my case (or not?) is that I have an exact cause that created this reaction in me.

In January 2017 I started up the Amazing Liver & Gallbladder Flush by Andreas Moritz (it's a book and popular flush protocol).

I started it because I would always feel sluggish and low on energy ("chronic fatigue"), especially in the afternoons after eating. But after a week or two I started to have the above-described symptom set non-stop, and even after I stopped the protocol (I didn't finish and flush out whatever may have been there, assuming these flushes work, because of how bad I felt), I continued having the symptoms almost every week for the last year and a half.

One ingredient that I took in large doses for that protocol was apple cider vinegar. I am certain it caused what I'm dealing with, though I forget how I came to that conclusion except that in light of histamine and mast cells, it seems obvious.

Another thing I had right before starting the cleanse, was major stress from some relationships during the holidays — and I had a pretty major head cold from my body mal-adjusting by flying to a freezing climate from a warm climate (Los Angeles to West Virginia in December).

I've briefly read research from Dr T.C. Theoharides MD PhD who studies mast cells, and I believe somewhere he stated there's often a multi-factor event that triggers the original symptoms, including stress.


Questions & Figuring It Out:

MAST CELLS / ALLERGIES

  • Is it common for mast cell issues to truly start out of nowhere? Or is it a slightly dormant thing that can then be triggered? Reading more of Dr TC Theoharides may illuminate this for me.
  • I've been studying all of this only a week. Before this symptom set, I only ever had seasonal allergies. I have myopia and wear glasses, and it was common in the past for my eyes to get heavy and tired, but until the liver flush I never had unbearable, burning eyes.
APPLE CIDER VINEGAR
  • I've seen people advising against ACV when there are known mast cell issues because of it being high in histamine. But has anyone ever heard of it causing the issue itself? I guess if stress can, anything can…
  • Does anyone have any theories as to what mechanisms could be at play with ACV in particular?
  • Could I have over-sensitized my mast cells or immune system? With taking 2-4 tablespoons of ACV in water a day, maybe it became a threat to my body, or my body was already weak from being sick+stressed and associated constant ACV with that?
LEAKY GUT
  • If I had moderate leaky gut before the liver cleanse, could constant ACV ingestion across 2-3 weeks have worsened it?
  • What if my mast cells aren't hyper-sensitive, but rather stuff is still getting through my gut? I wonder if there's a way I can confirm or deny this?
MC MEDIATORS
  • I just realized from this article that there are more mediators at play than histamine. I know about histamine intolerances because of MTHFR and Ben Lynch's work, but not the other mediators.
  • Anyone else have any knowledge?
  • It's suspicious to me how only my eyes and brain are affected. No rashes, no itching, no runny/stuffy nose unless it's allergies or a massive trigger like paint or chemicals. If it's indeed histamine at play, it seems to point to H3 or H4 receptors being triggered, not H1 or H2.
MC STABILIZERS
  • Are there any other stabilizers I should look into? I'm wondering if I should take more quercetin.
  • There's oral ketotifen out there, but I think that requires a prescription.
    • After one doctor mis-prescribing cipro (I had a varicocele instead of a testicular infection), another doctor hardly noticing or caring about my B12 deficiency, and three other doctors clueless about how to handle MTHFR and leaky gut and never coming anywhere near mast cell issues, I'm my own doctor and hesitant to visit one unless there are mast cell specialists out there.

"TREATMENT"
Mast cell issues appear to be a "manageable disease/disorder/syndrome" with "no treatment." I understand how complex this stuff is, but I really cannot accept that. Because:
  • A) It's not the "optimal" state of the body. The body is hyper-reacting to something. The body would rather not be doing this.
  • B) My eyes used to get heavy and and sometimes with a tired/dull mind, which may have been the same mechanisms, but my eyes never burned unbearably.
  • C) So either I never had mast cell activation issues before the ACV(+sickness+stress), or the ACV made it get way worse. Which means it has an on/off switch, or works on a spectrum of intensity.

So theoretically, it can be turned off or at least reverted to where it used to be! (I'll stick to this until I die!!!)

If anyone has knowledge to share and discuss, I'll greatly appreciate it. Meanwhile I'll continue investigating and experimenting on this issue as long as I have it, and will report back if I discover any advancements.


I've also attached a histamine / mast cell symptom flow chartI found (linked here for anyone else wanting to use it). It appears I may have low oxygen issues, but I don't understand how the mechanisms interplay in order to diagnose that or test it out. Blood oxygen level always showed up normal in lab work.
 

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kangaSue

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I had a varicocele instead of a testicular infection
Is this still an issue? Is it on the left side and did they look at the left gonadal vein to see if it was dlated too?
It appears I may have low oxygen issues, but I don't understand how the mechanisms interplay in order to diagnose that or test it out.
A blood test for Blood Gas Analysis.

Some interesting reading on low oxygen implications;
https://www.jci.org/articles/view/90055
https://www.jci.org/articles/view/84433
https://www.ncbi.nlm.nih.gov/pubmed/26206140
 
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Is this still an issue? Is it on the left side and did they look at the left gonadal vein to see if it was dlated too?
It is still present, and yes, on the left. Sometimes it aches, about the same as when I first became aware of it in 2010.

Do you mean if the gonadal vein was dilated? It was so long ago, I am not sure. I did a quick search about this and it comes up for women more than men, so I’m not clear on the implications.

Do you know of there being anything more to this? After discovering it was just a
varicocele and not an infection, nothing else was ever done about it.

A blood test for Blood Gas Analysis.

Some interesting reading on low oxygen implications;
https://www.jci.org/articles/view/90055
https://www.jci.org/articles/view/84433
https://www.ncbi.nlm.nih.gov/pubmed/26206140
Thank you for intodocuing me to oxygen research! Looks like I have a new rabbit hole to do some digging in. If relevant, my last lab work in April had this reading for carbon dioxide (but no oxygen or anything):

Carbon Dioxide: 29mmol/L from range of 20-31 mmol/L
 
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  • I just realized from this article that there are more mediators at play than histamine. I know about histamine intolerances because of MTHFR and Ben Lynch's work, but not the other mediators.
  • Anyone else have any knowledge?
Note MCAS is a relatively new field so doctors are not very aware. Here is some more info on MCAS:

MCAS guru is Dr. Afrin who wrote this "bible" in 2016.
The first step is to refer to this book to learn more
https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615/

Wikipedia

https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome

Mast Attack Website for more Info

http://www.mastattack.org/

Quest Lab Tests are :

Histamine
Tryptase
Prostaglandin D2, Serum, (frozen) @InterScience 94402
Prostaglandin F2a, Serum, (frozen) @InterScience 94533
N Methylhistamine , 24 hour urine - Wild to mayo
2,3 -DInor 11 Beta Prostaglandin F2 alpha, 24 hour urine - WILD to mayo
Prostaglandin D2 PG-D2, 24 hour Urine frozen 10180 @InterScience
Chilled plasma Heparin anti Xa - Wild to Mayo

* Special chilled/frozen handling instructions as these are tricky tests.

Mast cell issues appear to be a "manageable disease/disorder/syndrome" with "no treatment."
There is a variety of treatments available but it's a hit and miss approach.
 

sb4

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@t27r You seem to know a bit about histamine so I wonder if you can help me here. I suspect that my brothers long term severe gut issues could in fact be a mast cell issue. Here is my evidence:

-He probably has EDS based on flexible joints (moms has too, I have POTS). This is associated with mast cell issues.
-The onset of the problems came from drinking stupid amounts of alcohol one night (lucky he didn't cause more damage). Alcohol stops DAO. Alcohol is a big trigger for him now (perhaps mast cells remember alcohol as an antigen?).
-Thinking about drinking alcohol triggers a reaction. Gut brain axis telling mast cells in gut to expect alcohol antigen? Mast cells release histamine preemptively as precaution?
-He has hives appear on his skin upon cold stimulus. This too is associated with mast cells.
-Has fairly regular migraines.
-Had asthma as a child.
-Adult acne.
-80% of immune system is in gut (is 80% of mast cells there too?)
-Tolerable foods very limited and even then bad reaction can come out of nowhere.

I have given him advice to try some benadryl next time he drinks alcohol. What else would help me test this theory? I assume ketotifen is not systemic and only for eyes. Perhaps HistaminX and a DAO supplement?
 
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Hi @sb4 I’m definitely learning the ins and outs of it! (I think I'm just getting good at putting together puzzles without reference pictures, and I sort of enjoy it.) I wasn't aware of EDS before. POTS, can that be an occasional thing? I've gotten lightheaded when getting up quick sometimes, but not every time.

Let me know if you encounter any results with your brother, as my younger brother has a similar profile (migraines, acne, allergy issues), minus the alcohol.

Alcohol
The "stupid amounts of alcohol" reminds me of my run-in with stupid amounts of soda. It’s like an overload from which the body doesn't fully recover. (My symptoms started back up after that month with few issues.) Alcohol also has histamine, so it could be alcohol itself or histamine I suppose. I once had a normal sized beer (16 ounces?) and got a full hangover whereas everyone else can handle 2+, so either I'm super sensitive or that came from having leaky gut.

I discovered this article, Could Histamine Intolerance be at the Root of Your Gut Problems?, which says that vodka is low on histamine and the writer's able to tolerate. Maybe your brother would be up to some experimenting?!

Mind/Stress/Situational
That mental trigger is really interesting. I recently read of a girl who was eating grapes when she learned her mother died, and was allergic to grapes since then. This seems to indicate we can become allergic to anything when paired with a stressor, and that memory/emotion/experience can cause a new allergy. I just found this article,
Mast Cells and Stress—A Psychoneuroimmunological Perspective, via this blogpost, Mast Cells & Collagen Behaving Badly, and the article has this to say:
  • "Moreover, increasing evidence indicates that some molecules are released from mast cells without de- granulation, a process termed “differential release” and first reported for serotonin. … These findings support the possible relationship between intracranial mast cells and migraines, as well as MS, that are often precipitated or worsened by stress."

Histamine Receptors
That blogpost also describes the differences between histamine receptors, which has helped me narrow my own stuff down.
  • H1: these are found all over the body and are responsible for typical allergic reactions, eg. hives, itching, tissue swelling, allergic asthma, anaphylaxis. Medicines such as Benedryl and Clarytin stop histamine from binding to H1 receptors, although they don’t rid the body of histamine per se.
  • H2: these are found in the gut and are responsible for the production of stomach acid. Histamine is vital for food digestion, but an over-abundance can lead to gastritis, GERD, vomiting, diarrhoea and other GI issues. Medicines such as Tagamet and Zantac stop histamine from binding to H2 receptors but again don’t rid the body of histamine.
  • H3: these are found in the brain and central nervous system and when activated affect blood pressure, heart rate, smooth muscle contraction and the release of neurotransmitters.
  • H4: not much is known yet about H4 receptors, but they live in white blood cells, the spleen, colon, thymus and bone marrow. They are thought to regulate the immune system.
This is the clue that gives me confidence the reason ketotifen works to eliminate my eye symptoms is because it's a mast-cell stabilizer, not because it's an H1 antihistamine, since I've also taken cetirizine and diphenhydramine/Benadryl without reduction of symptoms.

If I have a receptor issue, it must lie with H3 or the mysterious H4. Based on the above description, I also wonder now if H3 receptors could be involved in POTS or the skipped beats I get typically associated with stress or exercise. However, I have not tried antihistamines for these, because it looks like they don't exist according to this article!
  • "Several H3-receptor blockers and H4-receptor blockers are under development, but have not yet been approved for use by the US Food and Drug Administration. H3-receptor blockers, such as ciproxifan, may be useful for such conditions as ADHD and Alzheimer's disease."
So based on that breakdown of receptors, it does appear H1 antihistamines should help with hives. I'm wondering if there's a topical antihistamine? Since the hives are caused by cold contact, an oral antihistamine may take a while to get there, and topical would make for a better test. With a quick search I found this list of four, one of which is "Itch Relief" that contains diphenhydramine (H1 antihistamine / Benadryl).


Gut & DAO
There is an oral/systemic ketotifen, I discovered, but it requires a prescription, at least in the US. I found this forum for Mast Cell Disorders and after some browsing, it appears people are having varying results with taking ketotifen this way.

From my research this week, I've learned there are mast cells all throughout the body, and they have tons of different mediators (so it could be something other than histamine causing issues). Mast cells in one area can give symptoms to another area, which makes it complicated. Like in my case, do I have mast cells in my eyes and brain going haywire? If so, why does diet-based histamine cause only eye/mind symptoms? Is it gut mast cells? But then why does their release effect only the eyes/brain? And if ketotifen eye drops help, that probably means the affected mast cells are in the eyes? :shrug:

I did a test last night taking the DAO supplement (Histamine Block) before having a medium-sized strawberry shake. If I noticed anything, it was very minor (my eyes got a bit tired, but it was also the evening). A few days before this, a small-sized shake gave me a full reaction (and ketotifen helped it). For good measure, I took HistaminX afterward to see how I woke up this morning. With a reaction, I'd still feel horrible. But I feel fine! So one or both helped, and I'm going to try to narrow it down.

I always recommend Seeking Health because I've used various of their supplements and the quality is superb, but the shipping to the UK may be high. There are other DAO supplements on Amazon. It may be wise to pair them with vitamin C if they're missing it (Histamine Block has it), as that vitamin seems to play into things (though now I can't find the source that explained how).

The HistaminX appears to me like a "natural antihistamine." It may not be as direct as diphenhydramine? I'm not sure. My opinion is that it's definitely worth testing a DAO supplement, maybe paired alone with alcohol, and then paired on its own with a food that is a dependable trigger.

I have to do more thorough testing also because there was one time a milkshake did not give me symptoms, and it tricked me to thinking I'd be okay the next time, but that was not the case. I don't think results should be concluded until a good stretch without symptoms.
 
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POTS
@sb4 I just discovered this article on POTS! Symptoms & Signs of POTS Syndrome.

It has a diagram of the symptom, which now makes me think I could have this too. My symptoms are comprise almost completely of the grey and orange circles, while being very minor for the blue and red circles.

The clearest thing for me is feeling useless with fatigue, and feeling weak after anger, both of which I experienced yesterday. *Migraines are rare and aches and pains are unusual unless I get PEM. I'm dizzy only every once in a while; being lightheaded is more common for me. I've never fainted before.

Experience with Migraines/Energy
I'm going to add a personal experiential note on migraines. It doesn't fit into western medicine, but then our issues sort of don't either… And I really don't care of anyone's ridicule, so whatever.

I've practiced qi gong, qi/chi energy exercises, and have attended about 5 week-plus meditation retreats over the last six years, along with meditating semi-regularly. So, I'm very aware of chi flowing inside me, and no, scientific instruments cannot measure it. I hoped something would show up on an MRI I had, but alas, no.

If this is foreign to you, think of a cold chill without the cold or an emotional shiver, a cascade of energy that is tangible but also abstract and not physical except for how it affects the skin. I can cause these swells of energy on command when I'm not burdened by symptoms or a bad mood. Sometimes they come with inspiration. This is chi (which may simply be the electromagnetic field of blood, which is, after all, iron).

Since my first meditation retreat in 2012, I have had major chi pressure in my skull/temples/forehead/crown. It's not a common experience and I have neither a western nor eastern explanation for it. But, if I get stressed or over-think too much, this energy starts to compress, condense, and solidify, and whenever I feel a migraine, it's clear to me that it's because this energy has become "pinpoint sharp" in a specific spot inside my head. Worse, if I squeeze my facial muscles and squint my eyes, I can "channel" this energy into an even more condensed state, and on command cause a sensation that borders on the migraine feeling. This is a really bad habit of mine that I sometimes do unconsciously.

So it's worth noting that my experience and definition of a migraine is "sharp energy" in my head that feels horrible, sometimes like a knife in my skull. When I get a migraine headache, it's really no surprise to me. I sense internally exactly what's happening; I just have no clue on the biology of it.

The other thing is that energy/qi exercises like qi gong and controlled breathing may help for someone who does not experience chi on its own, but has migraines.

For people with more advanced perception, direct energy exercises can be tested that de-compress the energy fields and ground our energy into the rest of the body and into the Earth. Yes, all that "woo-woo" stuff you hear people doing about. Some of us can feel it like we feel cold or hot.

A major issue I have from any perspective (physical, emotional, mental, western, eastern), is that I'm way too head-y and can't get out of my mind sometimes. Doing emotional healing work, learning some energy exercises, and making sure I don't have nutrient deficiencies is what has helped me so far, but I still have a ways to go.
 

sb4

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@t27r Thank you for the lengthy response. I have read the articles you linked and found them interesting. Particularly the H3 stuff. Makes me think there is an outside chance I could have a histamine problem without overt symptoms like runny nose, hives, etc.

I think the best bet for now would be to see how he does with Benadryl. Then try a H2 inhibitor like Zantac. Then maybe try similar versions of those supplements and hopefully I can get him to try the rice diet.
 

sb4

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Only just saw your second post now. I have become quite interested in qigong recently but know little about it. Have you any experience with muscle testing?
 
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Ketotifen from Japan- Family Pharmacy no prescription, not too expensive. Once B12 deficient alway B12 deficient I was told.
 
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@roxnhead Thank you for that! I'll do some more research on taking ketotifen orally to see if it's right.

B12: hmm... Today I'm discovering info that shows mast cell issues can lead to "sudden unexplained" B12 deficiency, which is exactly what happened to me in 2010. I will keep an eye on it!

@sb4 I think it was approved by a moderator after the other post.

Qi gong is a nice, gentle energy exercise option. Sort of like standing yoga.

I do have some experience with muscle testing. A guy had integrated it into an intuitive healing system that did wonders for some particular issues I had. He taught me several ways to go about it, and the method I preferred is shaking/nodding of the head, where a Yes response gives way to a nod and a No gives way to a shake. (Say "yes yes yes" or "no no no" to yourself and see if you can perceive the impulse going to the head before you nod/shake.)

I used it for several weeks before understanding the current solution to my issues, and I think it kept me out of some trouble. I asked myself "Will this cause me symptoms?" and waited for a Yes/No impulse. There was a miss or two, but I had several some good streaks without symptoms also.

I dislike doing it on myself because my head will be looking for an answer, and that mental bias gives false readings/impulses — like "I hope it won't give me symptoms, because I really want it right now." If you can have someone else perform it on you with the arm-resistance testing, that would be more reliable, unless you're good at emptying your mind. Donna Eden is a very accessible resource for this stuff and I'd recommend looking up videos of her on YouTube or browsing her website.
 

kangaSue

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Do you know of there being anything more to this? After discovering it was just a
varicocele and not an infection, nothing else was ever done about it.
I do, yes. You have a lot of symptoms (including autonomic dysfunction) that can go with having a compresssed left renal vein, renal Nutcracker Syndrome (NCS).

This far more commonly occurs in women (about 90% of cases) where they also commonly have Pelvic Congestion Syndrome too but in guys, the compressed left renal vein causes a left-sided varicocele.

All reference to NCS mentions having blood (which can be gross or microscopic) or protein in the urine but some 20% of cases occurs without having either of these.

NCS causes increased venous pressures in both the left kidney and adrenal gland which can mess with the whole renin-angiotensin system and levels of cortisol, aldosterone or renin can be affected although homeostasis does its bit to try and keep these things at normal levels so it's hard to know what the case is.

It could be that carbon dioxide near the top of the normal range could mean your system is trying to contain hyperaldosteronism but no one knows as these aspects of NCS aren't researched.

Start with a Doppler Ultrasound of the left renal vein and mesentery arteries too as SMA Syndrome is known to occur in tandem with NCS and can have subtle (or severe) GI dysfunction symptoms too.
 
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What is an alternative to ketotifen for the eyes?I don't find this available in my country and the burning eyes is a very annoying symptom that coorelates always with fatigue.I found this:
https://www.ebay.com/itm/Zabak-0-25...869883?hash=item2f3367493b:g:LFEAAOSwlNtdHnsd

but the concentration seems quite high compared to another product I saw and the instructions emphasize on how to take in order to minimizer systemic absorption
 
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Nevermind I was wrong, just bought ketitofen eye drops, 0.25mg/ml. It worked. It needs a few minutes but it slowly takes away all burning. Thanks for that!

Yesterday night I was determined to go out no matter what, I needed it. The previous night I had slept 9 hours but I was fatigued nevertheless. I took 30mg adderall, 1g alcar and the fatigue was mostly covered. The eyes though weren't, I couldn't keep them full open from the burning. I drove 1am to the duty drugstore and bought it. It saved the night.
 
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Something that was not fully clear to me from reading your post in terms of the Ketotifen. Are these drops just helping your eye irritation symptoms or are they having much greater body impact and subsiding your other mast cell symptoms, especially those 4 key ones you list.

I initially had the impression they were helping you much more than eye inflammation, but they are not meant to be used specifically for eye relief and not the mental/fatigue relief + you mention there is an oral version of Ketotifen, which I assumed you wanted to trial. Thanks for making this thread.
Are you still using ketotifen with success?
 
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The paper inside the drops provide instructions in order to avoid systemic absorption using the drops.I think you get a bit of it to your blood and it probably helps.2 drops on each eye seems to be noticeably better than 1.
 

ebethc

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here are some of my notes on histamine... some of this info overlaps w yours, but there is additional info that you might find interesting... in particular, some of the counter effect agents and references.

2nd: SAM-e and Pancreatic Enzymes (Wobenzym or Vascyzyme) can help w inflammation (histamine-driven and other types of inflammation). I didn't see either of those in your extensive notes, but i skimmed so I might have missed it. Each of those supplements have been a big help to me at times, but neither is a magic cure that helps ALL the time. something to consider and perhaps try.

=TYPES OF HISTAMINE RECEPTORS
There are four types of histamine receptors in the body, and activating each receptor performs a different task.
  1. http://www.scielo.br/pdf/abd/v85n2/en_10.pdf
  • H1 – blood vessel dilation, smooth muscle contraction of the bronchi and GI tract, stimulation of vagus nerve, increases histamine and arachidonic acid release, decreased AV node conduction of the heart, helps form nitric oxide, improves eosinophil function.
  • H2 – stimulates nasal and intestinal mucosa, relaxes the LES, increases vascular permeability, stimulation of suppressor T cells, increases stomach acid production, reduces neutrophil and basophil function, increases lymphocytes, increases activity of NK cells.
  • H3 – increases histamine in the brain as a neurotransmitter, suppresses norepinephrine release at parasympathetic nerve endings, stimulates nasal mucus, reduces bronchoconstriction and gastric acid.
  • H4 – enhances the function of eosinophils (disease fighting white blood cells), mast cells, and neutrophils.

  • Histamine H1 receptors: Smooth muscle and endothelial cells affecting skin; blood vessels
    • effects: vascular permeability, bronchoconstriction, platelet aggregation
    • counter effect agents: Benadryl, Claritin, Xyzal (levocetirizine) block activity of these receptors
  • Histamine H2 receptors: Cells in the intestines control acid secretion, abdominal pain, and nausea; heart rate
    • effects: heart rate & cardiac output; gastric secretion
    • counter effect agents: Pepcid, Tagamet, Zantac
  • Histamine H3 receptors: Central nervous system controlling nerves, sleep, appetite and behavior
    • effects: neurotransmission
    • counter effect agents: TBD
  • Histamine H4 receptors: Thymus, small intestine, spleen, colon, bone marrow and white blood cells; inflammatory response