Recently it has become increasingly clear that many patients who call requesting an initial psychiatric consultation are suffering from a common condition known as Mast Cell Activation Syndrome (MCAS). MCAS can present with extremely diverse fluctuating symptoms. Brain fog, anxiety, depression and insomnia are among the most common symptoms, and thus it is truly unfortunate that MCAS is not on the radar of most psychiatrists. When a patient reports massive bloating accompanied by a 15 pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition has made a big difference in terms of quick symptom relief.
Neil Nathan, MD has written an excellent chapter in his new book Toxic about MCAS. (pages 99-114).
Symptoms that Dr. Nathan lists which can be attributed to MCAS include:
- intense anxiety and depression
- Severe pain that can localize to joint, muscles, tendons and/or bones
- Unusual neurological symptoms like numbness and tingling in different parts of the body, paralysis and pseudoseizures
- Headaches
- Ringing in the ears
- Sensitivity to a wide array of stimuli, such as light, touch, sound, smells, foods, chemicals, and electromagnetic frequencies (EMF)
- Sore throat
- Swollen lymph glands
- Indigestion, including diarrhea, constipation, bloating, gas and heartburn
- Chronic debilitating fatigue
- Insomnia
- Cognitive difficulties, including brain fog and decreased focus, memory and concentration
- Pelvic pain
- Interstitial cystitis (a painful inflammation of the bladder)
- Shortness of breath
- Air hunger ( a feeling of being unable to take a deep breath)
- Skin rashes
- Difficulties with equilibrium and balance
When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition, i.e.” its all in your head”. They are commonly sent home with a prescription for an anti-depressant or anti-anxiety medication, which not only is experienced as invalidating, but does not address the root cause of their symptoms.
A number of patients with histories of head injuries have consulted me recently with symptoms of MCAS triggered by trauma to the head. Identifying MCAS as the source of their symptoms has important treatment implications and can speed recovery.
Mast cells are white blood cells that are part of the immune system and function as a bridge between the immune and the nervous system, acting to coordinate the two. Their primary function is to defend against toxins and infectious agents. Mast cells can be found in all tissues of the body, but the highest concentrations are located in those parts of the body that interface with the outside world, and are thus exposed to infections and toxins. These include the sinuses, throat, gastrointestinal tract, respiratory tract, skin and genitourinary tract.
Mast cells are filled with vesicles called granules that contain more than 200 different biochemical signalers. When a toxin or infectious agent is introduced, an individual with a well functioning immune system will mobilize their mast cells to orchestrate an appropriately measured response. The mast cells release their biochemical mediators, most prominently histamine, serotonin and tryptase, to neutralize the danger. If a person’s immune system has become dysregulated and hyper aroused, the mast cells can become over reactive. Instead of releasing their biochemical mediators in an appropriately self-limited way, they become disorganized and degranulate chaotically, causing the wide array of symptoms listed above.
Treatment consists of stabilizing the membranes of the mast cells so that they do not degranulate and calming down the nervous system.
For some patients, conventional over the counter anti-histamines can be useful, such as Claritin. Sometimes it needs to be compounded, because the fillers that are used can cause adverse reactions. Claritin is not helpful for everyone, and makes some people worse. Improvement may be immediate or can take up to two months. Another mast cell stabilizer is Quercetin 500 mg, a member of the vitamin C family. It is typically taken 30 minutes before meals, three times a day and before bedtime. A small number of patients do not tolerate it either. Another medication that can be helpful is Pepcid, an H2 blocker, starting with 20 mg before bedtime and increasing the dosage to twice daily if tolerated. All three can be used together. Other supplements which can be useful are Neuroprotek and Mirica.
There are natural substances that can be helpful such as Perimine, an extract of the perilla seed, Hist DAO which contains the enzyme diamine oxidase, 30 minutes before each meal, or Allqlear, a tryptase blocker, which is derived from quail eggs. It is also taken 30 minutes before each meal.
Prescription medications for MCAS include Ketotifen and Cromolyn sodium.
Some patients with MCAS benefit from a low histamine diet. I have written about this in previous posts. It is important to determine if this does in fact make a difference, because it is not healthful to restrict your diet unnecessarily. If you try it and do not notice an improvement, then do not continue.
In terms of addressing the hyper arousal of the nervous system, I often recommend Dynamic Neural Retraining System (DNRS). DNRS is an effective intensive experiential program which integrates components of cognitive behavioral therapy, mindfulness based cognitive restructuring, emotional restructuring therapy, neural linguistic programming, incremental training (a form of neural shaping) and behavior modification therapy to rewire neural circuits in the limbic system which calms the hyper active stress response. Some patients do not resonate with DNRS, and in that case Ashok Gupta has an equally effective program with a different tone that can be tried.
It is always critical to ask “Why does this person have MCAS?” in the first place. The answer is often that they are suffering from a chronic inflammatory response due to mold toxicity, Chronic Lyme Disease or Bartonella. Though treating MCAS is helpful for affording symptom relief, there is a need to address the underlying root cause in order for a patient to heal.
An exhaustive resource about MCAS is Lawrence Afrin MD’s 2016 book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemic of Chronic Illness and Medical Complexity.
Here is a great interview with Dr. Nathan where he discusses many of these topics:
