Living with systemic mastocytosis (SM) is different for each person with the disease. Symptoms, triggers and the effect on one’s quality of life all vary in severity.
Some people may have skin irritation and itchiness as a major symptom; others may experience gastrointestinal or neurological and psychiatric symptoms. It is also possible to have a combination of these symptoms, all at once or at different times.
SM patients report neurological symptoms such as headaches, low mood, dizziness, attention or memory deficits, anxiety, and sleeping problems. Medication and lifestyle modifications can help manage these symptoms and contribute to better living with the disease.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
Why do neurological symptoms occur in SM?
There are two reasons why SM leads to neurological symptoms. First, mast cells release histamines, cytokines and other chemicals into the bloodstream as part of their immune response. This can affect the central nervous system and brain function. Some 40% to 60% of people with SM report psycho-cognitive manifestations of their disease.
Learn more about SM signs and symptoms
Second, the burden of living with systemic mastocytosis can significantly affect mental health and well-being, leading to feelings of stress, anxiety, isolation, irritability and even depression as a result. Patients also report cognitive issues such as brain fog, trouble concentrating and forgetfulness.
Preventing SM neurological symptoms
Effectively managing life with SM’s often severe symptoms depends on recognizing one’s own personal symptom triggers and successfully avoiding them.
Reducing the frequency of symptom episodes will have a positive effect on one’s quality of life and mental health by reducing the burden of everyday life. Mast cells won’t be activated as often, reducing the histamines and other inflammatory mediators in the body.
Triggers may include certain foods, medications and vaccines, alcohol, insect bites, emotional stress, physical effort, sudden changes in temperature, pollen and skin friction.
Which medications can alleviate SM neurological symptoms
Your doctor may prescribe medication to help manage neurological and mood-related symptoms. Or you may be referred to a neurologist or psychiatrist for treatment of these symptoms.
Based on the symptoms you experience, as well as their duration and severity, your doctor will prescribe appropriate medication. The most common medications to treat neurological symptoms in SM include H1 and H2 antihistamines, cromolyn sodium, aspirin and ketotifen.
Managing SM neurological symptoms
You can avoid the onset of symptoms by adhering to a healthy diet and lifestyle—with low levels of stress, regular low-impact exercise, meditation and a nutritious, low-histamine diet. This will also help you manage symptoms if they occur.
Prioritizing sleep and finding ways to reduce pressure in your personal and professional life will contribute to alleviating the effects of SM symptoms on your mental health.
