Mast Cell Disorders Forum - What is a trigger?

Sarah4 Tutor Offline Posts: 34	What is a trigger? 02/09/11 at 16:44:03 What makes a trigger a trigger? I think some of them make sense to me, like why high histamine foods might be a problem, but why do things like perfumes and stress cause mast cell degranulation? Why do I have so much difficulty when I concentrate?
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Josie

Ex Member

Re: What is a trigger?
Reply #1 - 02/12/11 at 04:11:38

Hi Sarah ,

Triggers , urrrggghhh . We all take time to figure out our triggers . Are you aware of the common ones .

Your problem with concentrating is brain fog . It turns us normal articulate humans into mushy brained monosyballic morons . Well it does me . It is one of my warnings , esp if i can't remeeber a word . Ill have it 5 mins before more major symptoms arise . Day to day it makes me have to concentrate or write down what I am doing . yesyerday i set my phone on ringabck . By the time it did , 5 mins , I ahd to rack my brain as to why I had set it !!!!!!!!!!!!!!!! I ahve also become an intolerable channel flicker as in the ads I forget what programme I am watching . Our soap operas here can keep my interest as long as you don't distract me .

They haven't found a neurological connection with mast cells yet . But they have found effects of histamine in the brain. temperature connections . The new class of anti histamines being developed are aimed at dementia . This sums it up for me .

perfumes trigger me by the alcohol . So it fits with that . department stores are a dangerous place for me with the purfume ladies xxxxx Its a double for me as its inhaled and on the skin

I am researching stress and degraulation . I think its a misguided reaction from our caveman days . Lisa ?

I certinly experience stress related degrnulation . Mainly in seriously emotionally stressful situations xxx I get the full effect 24 hrs later . This is almost always an epi pen level reaction xxxxxxxxxxxx

have you sussed any of your triggers ?

Hugs
Josie

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Sarah4 Tutor Offline Posts: 34	Re: What is a trigger? Reply #2 - 02/12/11 at 08:15:42 Hi Josie- So far, my triggers seem to include standing for a while, bathing, eating, exercise, stress, alcohol and PMS. I am finding it quite hard to avoid doing these things, however! Sarah
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: What is a trigger? Reply #3 - 02/12/11 at 10:10:20 Hi Sarah, The bathing problem might be the heat. Something to notice and see, anyway.
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TRama

Ex Member

Re: What is a trigger?
Reply #4 - 02/14/11 at 06:05:10

Dear Sarah,

Put in a simple way, triggers are molecules than can cause mast cell activation.

Triggers are highly variable among masto patients, and are sometimes not easy to define in each patient. The only thing that is widely acknowledged is that it is wise to keep away from them, whenever possible.

In what concerns your issues with stress, they truly are common among us masto patients. In fact, stress hormones such as CRH, have been shown to being able to induce MC activation. That is the reason why, in my opinion, masto patients should learning coping strategies.

Stress sometimes makes something that is not a trigger a trigger. For example, if you are afraid of eating the "food X" you are more likely to react to it, if you get anxious over the whole subject.

Hope I've been of some assistance,
Tiago Rama, DMD

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Lisa

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I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil

Re: What is a trigger?
Reply #5 - 02/14/11 at 06:10:07

Wow!!!!! Tiago, where have you been all this time?!!

My goodness, it all makes so much sense with explanations like this!!!! This is really tremendous for just the little bit you say and explain makes it all fall into place so easily! I've really wondered what the mechanisms behind it all and although we have our theories, we don't have the technical understanding of the mechanisms and this makes so much sense!!

Excellent answer! Thank you so very much!!

Lisa

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Don´t forget, there is so much more to life than being sick!

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Sarah4

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Re: What is a trigger?
Reply #6 - 02/14/11 at 09:29:45

Dear Tiago,

Thank you so much for your response, it was very helpful.

I have noticed that if I am anxious/stressed I will have more difficulties overall, and I think you are right, I may be creating associations that cause me difficulties.

I do meditate and try to manage stress, but with all the additional stressors that come with being ill and disabled, I find it challenging to say the least.

What is a DMD?

Again, thank you-

Sarah

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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TRama Ex Member	Re: What is a trigger? Reply #7 - 02/15/11 at 04:30:47 Sarah, DMD = Doctor of Dental Medicine
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Josie

Ex Member

Re: What is a trigger?
Reply #8 - 02/16/11 at 08:18:22

Hi Sarah ,

I understand . i trigger with many of the things you do

. In these cases its about adaptation . I have cool baths . have changed all my bath products to sodium leureth sulphate free . It made me itch and be short of breath when I inhaled it . I also ahve alcohol free products and as paraben free as possible . I am able to bathe now without immediate flushing and shortness of breath xxxxxxxxxxxxxxxxxxxxxxxxx

PMS - ah yes . For years i have had PMS . There are hormonal links to angiodeama . I don't know the biological link . But I am high risk on ovulation day and when i come on . The night in which i do has been a relaible day for me to go to A&E . My abdomen has always swollen 2 dress sizes since I began my periods .

I too can only stand for very short periods of time . Still not long enough to boil the kettle . So even minor exertion is a challenge for me as body is acting like i am running a marathon

Becoming disabled , yes its poo . I understand . Since i accepted this I ahve coped better . But i still ahve times when I am tearful . It passes in its own time . For a while i was going through a mourning process for what had gone . Now I am accepting my life and living every moment I can . The symptoms are an everyday occurance . For a long time I have been living hour to hour . I am in my good month . So am living half day to half day .

Emotional stress is a major trigger for me . On a low level day to day I am managing it . Bigger stuff is harder to leave . I have adopted a I need peace for my health attitude . It has helped me as I found it very difficult standing back from those who were causing me emotional stress . i felt selfish and guilty . But it has paid off for me

Also those who are true friends have stuck by me

.

I was finding explaining it all difficult . lisa gave me some lovely advice . To say i have an illness that makes me allergic to many things . This helped me as I wasn't able to explain so friends could understand

Alcohol is a common trigger in all of us

. have you seen the mast cell activation videos on you tube . They are titled mast cell activation symptomology. They are good .

Big hug xxxxxxxxxxxxxxxxx

Josie

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Lisa FORUM MODERATOR/ADVISOR Offline I am not a doctor. Posts: 1499 Volta Redonda, RJ Brazil	Re: What is a trigger? Reply #9 - 02/16/11 at 09:06:46 Alcohol is a known mast cell degranulator - some forms of alcohol are worse than the next. Red wine is the worst. To the best of my knowledge all alcohol should be avoided unless it's been cooked and then I believe it's okay. But I'm not 100% certain on that one.
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: What is a trigger? Reply #10 - 02/16/11 at 10:21:38 What is a triget a trigger is a signal to the mast cells so is it the mast cells over reacting or is it the signal that is to strong should we be treting the mast cells or the SIGNAL mabe we are shuting the gate arfter the bull got out just brain storming
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Josie

Ex Member

Re: What is a trigger?
Reply #11 - 02/18/11 at 06:32:32

Hi Peter ,

My thoughts about triggers is they are things that trigger mast ells either directly or through another biological process .

So mangement should be :-
Identify and reduce triggers
medicate appropriately to a satisfacory level
manage life threatening problems quickly , safely and appropriately .

Triggers easily ( rleatively ) manged are :-

exercise
obvious food reaction
medication reactions

medium to mange :-

working out food / medication reaction patterns - with use of common food trigger guidelines

reducing dietry intake of histamine with low histamine diet

emotional stress

physical stress - procedures - guidelines on pre medication , docs/ dentists and patients working closely together with ideally a mast cell specalist .

Life mangement - cold / heat management and not becoming housebound .

Difficult to mange :-

chronic mast cell activation affecting eating as it can sometimes be the gut , not the foods in those who have been reacting for a period of time .

airbourne triggers .

Infection as a catalyst for increased sensitivity to known triggers

It took me nearly 2 yrs to suss my food and medication triggers aside of obvious in the moment reactions . Also to work out my infection signs . Not as easy as it sounds when you are permenatly hot and have flu like symptoms daily xxxxxxxxxxxxxxxx When swine flu hit my town . I had a chest infection , no rleationship .

I rang my docs and was asked if I ahd flu like symptoms ???? I said yes , but I ahve flu like symptoms every day . My problem is I am coughing up green stuff . No i don't want to visit you ( with your pig flu patients ) i want antibiotics , thanks

When its not an obvious infection . i am randomly cold and want to switch my fan off for 2 mins and put a jumper on !!!!!!!!!!!!!!!! , untill i flush .

So we can stop the bull even thinking about bolting , and stop his potentail damage . Its a mixture of art and science

I hope this helps

Josie

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peter

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I Love YaBB 2!
Posts: 294

Re: What is a trigger?
Reply #12 - 02/18/11 at 09:29:08

JOSIE that is a grat little letter mangement of exturnal
triggers is easil for me it is the systemic ones that i have a problem
with chronic mast cell activation makes my body hyposensertiv
with the pils and time it comes back to just been sensertiv
but what ever the systemic ones are thay just keep going
i dont react to food i tried the low histaminw diet dut the stress
of the diet was worse then the histamine i just went back to been normal and it all setelled down but becoming disabled when iam not
sick is hard to come to termse with but hay LIFE IS GOOD
well untill i run out of money

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Josie

Ex Member

Re: What is a trigger?
Reply #13 - 02/19/11 at 02:42:07

Hi peter ,

i completely understand the becoming disabled thing

. My life has changed . I was nursing full time in cardiology and coronary care . Now I am restricted in my mobility by pain , fatigue and shortness of breath. I ahve been through a grieving process for what is gone . For a while I couldn't talk about work without bursting into tears . Now I can . I can see a future . I have a new normal now . But I can see the light at the end of the tunnel and its not an oncoming train

I am very lucky to be educated , so have options .

But all this is dependant on my IA being stable . So for now achieving this is my goal .

I have had to put my health first and some days it is still very hard emotionally . But in keeping my stress as low as possible I am getting some life back .

On the low histamine diet you can have corn starch , this is an absolute no for me . It swells my bowel and the extra circulating histamine makes me swell everywhere else esp in the restricted area in my lungs and throat / mouth . i was having symptoms and blaming the most recant food . It wasn't that all the time . It was the coated meds being digested in my bowel . i was having spasms , rectal pain and going sweaty , pale and spacy . my lips were going blue when i walked due to the drip drip of triggers all the time . Excluding this from my diet and meds has been a major step for me . Corn itslef is ok for me . The problem is they soak it in sulphites to soften it and then use more sulphites to bleach it . Sulphite preservatives are a major trigger for me . Gelatine falls into the same camp

Both took me along time to work out as it was several reactions that got me to it and the fact i was on a restricted diet and still as ill if not iller xxxx

I don't mind being called disabled because I am in certian ways . the first time I was described as a vunerable adult was strange . But it is true . I am in some ways daily and in many ways after a reaction .

hugs

Josie

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Sarah4

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Posts: 34

Re: What is a trigger?
Reply #14 - 02/19/11 at 06:17:32

Thank you for all this info, everyone.

Josie, one my worst triggers (if not THE worst), are the hormonal changes during PMS, and to a lesser extent, around ovulation. I have thought about trying to control these with hormonal birth control, but when I was on the pill years ago I was worse overall.

Are there any good ideas/suggestions for trying to manage during these times, or do I just have to get through it every month?

Sarah

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Hyperadrenergic POTS, probable MCAD, HDCT (overlap EDS/Stickler Syndrome), Dermatographic and Cholinergic Urticaria, hypothyroidism, pituitary microadenoma, migraines, chronic pain

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