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

helios

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Several compounding pharmacies in Brisbane can make this up for you, a doctor's script needs to stipulate the strength and quantity.
Prices can vary so ring around. I found the Compounding Lab at Albion to be competively priced.
Thanks for the info. I went out and bought the eye drops and apply liberally but cant say I have noticed much change in my well-being. I am going to see a doctor soon so I will run this Ketotifen past him. I tend to find compounding pharmacies not that cheap compared to the cost of the raw ingredients
 

ebethc

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@ebethc
What is TBD?Couldn't find anything.Maybe you meant CBD?
it's a common English-language acronym for "To Be Determined" :) I put "TBD" because I couldn't find anything here.... If you find a counter-effect agent for this receptor, please let me know and provide source. thanks
 
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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?
Hello, sorry it took me so long to get back. I actually need to revise/update my whole assumption about my health. Histamine may have played a part in my illness, but I've since discovered that I had serious imbalances/deficiencies with most of my neurotransmitters. Genetic dopamine imbalance/backup, 10-20 year serotonin deficiency (you read that right), GABA all haywire… At some point I'm going to do a whole writeup on my blog, but it'll be some time down the road.

As for ketotifen: the eye drops seemed to only help soothe my eyes a bit which may have made my cognitive impairment feel a little better, but it did not any of the other symptoms (which I no longer attribute to histamine, but rather D and zinc deficiency along with the neurotransmitters, and slippery elm which somehow helped me a ton). I'd think that oral ketotifen would affect histamine elsewhere in the body, but I'm really not sure.
 
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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
Thank you for this! Especially for others here who may be actually dealing with histamine issues whereas I may not be. :) My body is way better but still stabilizing. I may come back to histamine down the road and see if it fits back into the possible from a different altitude of health.

Good note on the SAM-e. I learned I require it for genetic reasons, especially for processing dopamine which builds up otherwise. I've also been taking Pancreas by Ancestral Supplements to assist my digestion overall. Plus zinc appears to be resolving my 2-3 year chronic semi-diarrhea. I think I'm copper-high more than zinc-low though, so am not yet sure if I'm taking the right approach by adding only zinc to my body. To be determined!
 

stefanosstef

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Last 7 days I was taking zinc daily and my IBS-D is nonexistant.If I hadn't read this last post I would never made the connection.I have a few days wondering what could be the cause for this because the change is big and I forgot about zinc, no other change was made.Incredible finding!
 

EddieB

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I'd think that oral ketotifen would affect histamine elsewhere in the body, but I'm really not sure.
I’m chasing this question myself. I am in the process of weening off an antidepressant (mirtazapine) and have had a severe uptick in symptoms. With further research, I’ve found that mirtazapine is a strong H1 antihistamine.
The dose that I’m down to (approx 1.5 mg) theoretically can’t be doing much. Yet as I’ve attempted to stop taking it completely, my symptoms become worse, the nausea is becoming unbearable. I don’t see how that dose could be acting as anything but an antihistamine.

I’m going to go back to taking the 1.5 mg for a few days to see what effect it has. I hate to, as my doctors want me off it to try another med. But if this is histamine problem, more antidepressants aren’t the answer. I also have a call into my immunologist to discuss options, namely Ketotifen. There has to be a solution to the horrible nausea I’ve suffered with for decades.

Do you have any digestive issues as well?
 

kangaSue

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I’m going to go back to taking the 1.5 mg for a few days to see what effect it has. I hate to, as my doctors want me off it to try another med. But if this is histamine problem, more antidepressants aren’t the answer. I also have a call into my immunologist to discuss options, namely Ketotifen. There has to be a solution to the horrible nausea I’ve suffered with for decades.
Cyproheptadine (Periactin) is a H1 blocker closely related to ketotifen, and may be an alternative to it and a lot cheaper being available over the counter.
It's a first generation antihistamine so is quite sedating in many (most?) cases (crosses the brain blood barrier). I know of a number of people who find this to help a lot with their GI sensitivities to foods, meds etc (most people seem to take it at night.
That said, I've come across just as many people who find that it worsens their GI symptoms so it comes down to the individual's response.
I am experimenting with it at the moment (only 2 mg at night) and I have severe gastroparesis that usually responds very poorly to any newly introduced meds but I am tolerating cyproheptadine o.k. so far, but it's only been 5 days. Can't say I have any improved GI symptoms yet, but there's been no worsening of symptoms either and every other H1 antihistamine I have tried before has caused a rapid worsening of symptoms, within a couple of days, and that goes for ketotifen too.
 
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Learner1

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I've been on oral compounded ketotifen for the past 3 years. It works systemically. Though I've also found the eye drops, sold over the counter without a prescription here are handy for itchy eyes.

Cromolyn sodium is a helpful mast cell stabilizer. It calmed my severe intestinal pain side effect from IVIG.

Over time, Rituximab has lessened my mast cell symptoms, so that I don't need the meds anymore unless something I'm really allergic to is pollinating, like birch trees.
 

stefanosstef

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I've been on oral compounded ketotifen for the past 3 years. It works systemically. Though I've also found the eye drops, sold over the counter without a prescription here are handy for itchy eyes.

Cromolyn sodium is a helpful mast cell stabilizer. It calmed my severe intestinal pain side effect from IVIG.

Over time, Rituximab has lessened my mast cell symptoms, so that I don't need the meds anymore unless something I'm really allergic to is pollinating, like birch trees.
Can you tell us more about oral ketotifen?
The drops ease my heavy eyelids and red/stingy eyes and I think it also manages a small part of brain fog/cognitive issues.From my experience, using them rarely, I found out that the effect only lasts for 2-3 hours.
 

Learner1

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Oral ketotifen must be compounded in the US. The only FDA approved drug on the market, is the eye drop formulation. I have a compounded pharmacy compounded in 1 mg pills, and typically take two 3 times a day if allergies bother me, although after the Rituximab I haven't needed it very much, only when the birch trees were in full bloom nearby, and they're my worst allergy of all.