Stress Management and Expanding Your Bubble… What the Hist? Part 6
In part 5 of this series we explored the paradox of MCS patients not reacting predictably to triggers in clinical trials and how it shows the importance of stress management. In this part, we will elaborate on how to avoid the feedback loop of stress-triggered histamine in order to avoid an ever increasingly restrictive diet and lifestyle.
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Acknowledgment:
Nobody wants to eat a super restrictive diet or avoid all mainstream cleaning and cosmetic products. Nobody wants to be the person who can't order off the menu, who has to ask for a rule against perfume in the office. Patients do these things because it is necessary for them to avoid severe symptoms.
While this post will talk about trying to restrict less, it is in no way a judgement against those who need to restrict greatly. I spent a month eating nothing but boiled broccoli, chicken, and pasta because its what I knew was safe and my ME was too severe to risk anything else.
It also must be acknowledged that a "reaction" can mean everything from a mild rash or slight headache to throat swelling, EpiPens, and an ambulance ride. Obviously, these two reactions need to be treated differently and I do not recommend experimenting in any way that could be life-threatening. Additionally, people's level of overall health is also important to consider. Someone who is severely ill may not be able to take the same risks as someone who is healthier.
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What to do: experimentation and expanding our bubbles.
There are a number of strategies for expanding our histamine bubbles. This post will just touch on a few.
-Elimination Diet
-Defining an Acceptable Reaction
-Blinded Trial
-Quantity & Bucket Theory
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Elimination Diet
The gold standard for correctly identifying triggers is the elimination diet. If you can not get to state where you are not reacting to anything, you will never be able to draw definite conclusions on what is safe for you.
While an elimination diet has elimination in the name it actually consists of adding foods. Not subtracting. This mindset is helpful as it keeps you thinking about what you can bring into your life as opposed to what you must eliminate.
An elimination diet should be done under the supervision of a nutritionist as at the beginning you risk malnutrition due to the extremely low initial food variety. It is also important that when trying an elimination diet you also eliminate all household and hygiene products that might be triggering you.
Despite being the gold standard the elimination diet simply is not feasible for many and its extreme commitment is its largest detraction.
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Defining an acceptable reaction:
Obviously, life-threatening anaphylaxis is not something to mess around with. But there are likely many symptoms that you can bear in order to increase what food and products you can have in your life.
Defining an acceptable reaction, practicing acceptance of symptoms, and not stressing about these minor triggers will give you a more accurate read on which are really causing the most symptoms.
You may even find that over time the stress reduction of being less restrictive actually means that despite adding in foods and products that cause minor symptoms your overall symptoms actually improve.
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Blinded Trial
The stress feedback loop of eating something you suspect to be triggering is a major hurdle to trialing triggers to see if they are active.
If you live with someone and the thing you want to trial is easy to hide you can consider having the person you live with expose you to a small amount of potential triggers 1 at a time without your knowledge of when. Record your symptoms and cross-reference them after the fact to see if your reaction held when you didn't know about the trigger.
Note that it is important to only do this with triggers that do not cause life-threatening reactions. It is also prudent to only test a small amount of the trigger in this manner. If you later learn you did not react you can then gradually experiment with increasing the amount, with a massive stress reduction from knowing you did not react to it previously.
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Quantity and Bucket Theory
It is important to remember that histamine is a natural part of our body. It is only when we have too much that it becomes a problem. You can think of histamine level as a bucket. Some things add a lot to the bucket others a little. The thing you are adding matters but so does the amount.
Therefore it is important that rather than simply categorizing things as reactive or non-reactive you try to determine safe amounts of a food. Go through your trigger list starting with those you are most unsure about / have the mildest reactions and try eating small amount and gradually increasing until you hit the maximum "acceptable reaction" as discussed previously.
It's also important to remember the bucket theory to allow for necessary exposure. For example, you may know that washing your hair will use products that cause a reaction. So maybe on days when you wash your hair you only eat your safest foods, minimize stress and don't overexert.
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Avoiding Pitfalls
Control variables: it is important that even if you are not doing an elimination diet you do any experimentation 1 piece at a time. Variables you should control include:
-Diet
-Household cleaners & personal hygiene products
-Environment (Don't do an experiment when traveling)
-Exercise (Exertion can trigger mast cell activation and histamine release)
-Stress (Don't do an experiment when you have a stressful event coming up)
Practice Optimism:
I hate toxic positivity and you absolutely don't have to be optimistic all the time. But its an important variable not to expect an experiment to fail from the start. If you are expecting and fearing symptoms then the stress of that emotion is likely to cause histamine release and throw off your experiment. Only do experiments you feel you can do without provoking anxiety. If this is very hard for you, consider working with a therapist and talking with your doctor about rescue meds and being better prepared for a reaction to make the idea of reacting less scary.
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Rescue Medication
One essential thing to consider before experimenting with triggers is rescue medication. By being prepared for everything from rashes and nausea to anaphylaxis you will decrease stress at trying new things and minimize mental and physical harm when some experiments inevitably fail.
Some key rescue medications include:
Epipen
Benadryl
Prednisone
Amphetamines
Benzos
Steroid Inhaler
And if you have a port or IV access
IV Benadryl
Solumedrol
Additionally, I find it helpful to have on hand
Cold packs and gel pads (for flushing)
Zyrtec liquid gels (gets into bloodstream faster than standard zyrtec)
Steroid cream (Use sparingly! Overuse can cause skin issues)
DAO (helps body break down histamine faster)
Note that some rescue meds like Benadryl, liquid zyrtec, and DAO can be used liberally to control reactions while others like steroids, amphetamines benzos and EpiPens are best to avoid using regularly as they can have severe side effects and may be difficult to get prescribed regularly.
Because stress triggers further histamine response meditation can also be considered a form of rescue med, as can distraction in the form of stress-relieving entertainment. If you are too stressed by a reaction to meditiate consider watching TV or listening to calm music, anything that will allow you to focus on something other than your symptoms. Of course, distraction and meditation is not always possible and anxiety, tachycardia, and feelings of impending doom are a symptom of anaphylaxis so all we can do is our best.
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MCAS, MCAD, MCS, HIT, chronic hives, asthma, the world of mast cell activation and histamine intollerance is big and confusing. Mast Cell issues are a common commorbidity to Myalgic Encephalomyelitis or MECFS and related complex chronic illness. Yet the factual information about these diseases is often conflicing and difficult to decipher.
The final part of this post series is the most optomistic.
In part 5 of this series, we explored the paradox of Multiple Chemical Sensitivity patients not reacting predictably to triggers in clinical trials and how it shows the importance of stress management and the challenges of properly identifying triggers. In this part, we will elaborate on how to avoid the feedback loop of stress-triggered histamine in order to avoid an ever-increasingly restrictive diet and lifestyle.
Experience is such a huge part of life. Part of the reason people with Myalgic Encephalomyelitis and/or severeME are called the millions Missing is because of how greatly MECFS restricts our ability to experience life. MCS and MCAS are two commorbidities that greatly exhasurbate that restriction. It is for this reason that I so strongly support strategies that allow for less trigger avoidance and more experience.
With all this said, I must aknowledge that pwME particularly people with very Severe ME often have extremely agressive forms of mast Cell Activation Syndrome that simply do not allow for expansion of any bubble. They may require tube feeding due to gastroparesis and nutrition may be forced to come before taste and experience.
While I have not personally experienced gastroparesis or tube feeding, I have struggled with nutrition and been extremely limited in diet despite utilizing all the tools described in this series.
All this to say, the goal of expanding our bubbles is not a judgement against those of us who cannot. Sometimes no experience is better than a traumatic one. Sometimes risks just aren't smart or reasonable. All we can do is our best.
