Mast Cell Activation Syndrome and Pain

Discussing MCAS and chronic pain, relating histamine issues with migraines, CRPS, fibromyalgia, and irritable bowel syndrome

[SatumainenOlento]

These are extreme good videos! Very good to follow and understand. He is an excellent educator!
I also loved the content! It is quite exciting to hear about this common nominator to some of very similar, previously quite mysterious illnesses. This just makes sense!

Long story, but why the video makes sense to me from genetic point of view:
Both my parents suffer from frequent migraines. My mum has hemiplecig migraines and my dad could lose consciousness in the middle of sitting at the kitchen table. My brother had 60 different items on his list of allergies. I have none known allergies (perhaps for dust and mold). My mum, brother and me have very low alcohol tolerance. I can not stand chemicals the same than other people. No migraines for both my brother and me. (I might have had some visual auras when I was 14, but I did not get migraine pain afterwards. So it was "silent migraine".)

I came down with non-diagnosed illness last June 2021. It started with migraine aura symptoms. I lost nearly my whole vision for around 20-30min. This prismatic aura slowly took over my vision after I came back from 2 hours walk. It went away and 10-15min later my whole right arm went numb for 20min. I was walking home and I was feeling extremely sick and hot and terrible. And confused. This was my first "migraine" attack in the age of 38. I got home and took pain killers and waited for migraine pain to start. It never happened.

The following days I was feeling very bad. Weak and nauseous. My body temperature would fluctuate. Heat would make me go worse. Flushing. I also had strange "attacks" where my consciousness levels would drop and I had weakness and dropped body temperature under 35.5celsius and weak heartbeat.

1, 5 weeks later I woke up at the morning with full body rash and swollen face. I went to doctors who said that it looked like measles and told me to take my time getting to A&E. By the time I got there, my face had gone double and the rash had gone mad. I got steroids to my vein and spent 6 days in the hospital. They said that I had some type of anaphylaxis. But not sure, because my vitals had stayed normal during this. They could not find anything after doing multiple tests, MRI scans etc. My rash had disappeared and they sent me home.

After that...
I continued with swelling, flushing, rashes nearly daily. Plus huge list of other symptoms which FATIGUE is the worst. I am eating small dose of antihistamines, but the real help came when the winter arrived and the temperatures dropped. I have now time to get on the top of this before heat waves starts again at the spring.

I am still having daily flushing and rash seems to be rising every time it gets a little more hot. Fatigue is better. But not gone. I am ill at home. I can not go for walks as too weak fatigued and the rash rises up.

When I tried to find matching rash photos to my own they seemed to fit only with MCAS, mastocytosis and various medical over-reaction rashes and some tropical illnesses. I had no medicines in my system at the time of my anaphylaxis and I am not in tropics.
I will keep looking info.
Doctors are saying that I must have some type of autoimmune disease and I am on a waiting line to see some specialists next year (LOL 😀 waiting lines in this country are deadly). I had some symptoms before this summer, but they were not allergia related.

I think that something started when I was exposed to toxic glue fumes in my workplace for 5-6years. I finished working there on 2015, but I never quite recovered.

Hope this interested somebody. This was the reason why everything in this video just makes sense to me!

Genetic disposition-> Toxic exposure -> Years of high stress+traumatic experiences -> Reaction& Illness!

[valleabrown]

This is so interesting. Kind of off topic but now I know why they give dogs antihistamines with MCT.
Thank You Doctor Gates!

[EmilyEverglot]

Mast Cell Activation Syndrome is a cormorbidity of Ehler's Danlos Syndrome which is an extremly painful condition and is genentic.

[sarahb.]

I just read Dr Afrin's book yesterday. He wrote it in 2015. What new things have they found since then? Is any research being done on it? Did anyone try to create animal models of it yet?
I do think he is right and that people suffering from this had it even as kids but they just never knew what it was. Like I had chronic "colds" as a kid that would last for a month - I was also under very high stress since a young child. My mother would get the nosebleeds he mentioned in the book and she had gut issues just like I do.

[emilyingridlaura]

What were the person do to resolve it or treat it or manage it? Are you going to do a full video on that too?
I would really appreciate it.
How would we approach this with our doctor? And is there anything Physicians can help with that? This is a wonderful video thank you

[robertharris]

Excellent video. Dec 21 I started having charlie horse level pain in every muscle in my body. But no physical cramp. Very odd. I tested positive for Covid a few weeks later and have been dealing with this pain for 2 months now. The muscles tremor and twitch all day and even my intestines get involved and have had diarrhea the whole time. I've gone to a low histamine diet and take hydroxyzine, but the pain won't stop. My doctor just wants me to take duloxetine (cymbalta) which I know they use for diabetic nerve pain and obviously anxiety (which I now have of course). He didn't prescribe me any cromolyn sodium which I've seen can be a great mast stell stabilizer. Any recommendations on where I should go for help?

[sunnynights]

I had so many strange childhood happenings: fainting, seizures, allergic styes, hives. In my 30’s I did not have my childhood problems but I did have stomach issues. In my 40’s I started to get chronic migraines that didn’t resolve with the multitude of medications I was given. I stumbled upon this MCAS and I am now seeing an immunologist who knows a bit but is willing to learn with me. I do think that treatments need to be changed up frequently because of the nature of the immune system. Right now I am just taking 1 xyzal and 1 pepcid AC every night as well as a histamine block every morning and I’ve felt pretty good the last week. I suggest anyone who thinks they may have this issue to give an antihistamine and a Pepcid and histamine block every day to see if it helps.

[greta]

Just wondering - is there a way that pain is measured besides the patient's own description on a scale of 1-10? Is there any test or tool to measure pain objectively?

[Truerealism]

Yes and because alot of us have Asperger's.or and add ADHD.this is the caus e.of mcas albeit were undiagnosed like Charles darwin