How To Recognize And Treat Mast Cell Activation Syndrome
The Driscoll Approach™
Mast Cell Activation Syndrome (MCAS)
Do you experience muscle pain? Do you have recurring bouts of wheezing, coughing, or shortness of breath? Or, do you feel your heart beating rapidly, suffer from headaches, confusion – even anxiety or depression? If these symptoms are familiar to you, you may have Mast Cell Activation Syndrome (MCAS).
What Are Mast Cells, And What Is MCAS?
Mast cells, when functioning normally, release chemical mediators that help our bodies resist infection and repair damaged tissue. Mast cells are our first line of defense; when we are exposed to a perceived threat, it is our mast cells’ job to neutralize the threat.
When you suffer from Mast Cell Activation Syndrome, your mast cells become confused. Instead of releasing chemical mediators to deal with real threats to your body and immune system, mast cells release mediators in response to harmless substances or stimuli. This inappropriate release of mediators can negatively affect many different systems in your body and is usually chronic.
The onset of MCAS is often unpredictable and abrupt. Triggers include excessive heat or cold, stress, exercise, alcohol consumption, insect bites, antibiotics, pollen, and pollution. Even things as benign as sunlight or perfume can trigger Mast Cell Activation Syndrome.
How Do I Know If I Have MCAS?
Mast cells, when functioning normally, release chemical mediators that help our bodies resist infection and repair damaged tissue. Mast cells are our first line of defense; when we are exposed to a perceived threat, it is our mast cells’ job to neutralize the threat.
When you suffer from Mast Cell Activation Syndrome, your mast cells become confused. Instead of releasing chemical mediators to deal with real threats to your body and immune system, mast cells release mediators in response to harmless substances or stimuli. This inappropriate release of mediators can negatively affect many different systems in your body and is usually chronic.
The onset of MCAS is often unpredictable and abrupt. Triggers include excessive heat or cold, stress, exercise, alcohol consumption, insect bites, antibiotics, pollen, and pollution. Even things as benign as sunlight or perfume can trigger Mast Cell Activation Syndrome.
“If MCAS (mast cell activation syndrome) is secondary to an underlying inflammatory process, treating mast cells will help the patients feel better, but will not “cure” the patient. If the patient is left to treat mast cells (a secondary response) without treating the primary problem causing MCAS, they will never be free from the presentation.”
– Diana Driscoll, Optometrist
How We Deal With Mast Cell Activation Syndrome (MCAS)
At POTS Care, we first need to determine if your symptoms are truly due to mast cell activation. Numerous conditions can mimic mast cell activation but need to be identified to properly treat the patient. If these are not identified the patient can be left to suffer, but they often assume (sadly) there is nothing else to be done. We are careful to analyze inflammation (even down to the genes involved!) to properly diagnose this condition and those that present similarly to mast cell activation.
Many inflammatory cells release similar chemicals as mast cells (such as histamine or prostaglandins). Eosinophils, for example, have been linked to POTS and must be identified properly. Additional inflammatory cells can also mimic MCAS — and often one inflammatory cell calls in other inflammatory cells. Rarely is one type of inflammatory cell the only problem that needs to be addressed. If mast cells are activated, blood levels of tryptase will rise when a patient is symptomatic. Confusing the picture, however, is that genetic disorders (perhaps unrelated to mast cells) can also cause a rise in tryptase! A close analysis of blood work, patient presentation, and genes (when possible) will provide us with the complete picture.
Finally, if your mast cells are activated we then ask, “What has activated them?” Until we understand what has worsened the patient, we risk treating only the symptoms, where treating the source of the activation can be much more beneficial.
This is tricky to accomplish and every patient must be evaluated and treated as an individual. To do so, we toss out labels and evaluate POTS and comorbid conditions from their onset. If you’ve ever wanted a team to dig deeply into your case to locate and treat your issues at the source, you have found that team at POTS Care.
“I first became interested in mast cell problems because as an eye doctor, I treat mast cell involvement of the eye routinely. It wasn’t until I was misdiagnosed as an MCAS patient that I was forced to dig deeper.”
– Diana Driscoll, Optometrist
References
Krystel-Whittemore, M., Dileepan, K. N., & Wood, J. G. (2016). Mast cell: a multi-functional master cell. Frontiers in immunology, 6, 620.
Haenisch, B., Nöthen, M. M., & Molderings, G. J. (2012). Systemic mast cell activation disease: the role of molecular genetic alterations in pathogenesis, heritability and diagnostics. Immunology, 137(3), 197-205.
Hannah-Shmouni, F., Stratakis, C. A., & Koch, C. A. (2016). Flushing in (neuro) endocrinology. Reviews in Endocrine and Metabolic Disorders, 17(3), 373-380.
Izikson, L., English III, J. C., & Zirwas, M. J. (2006). The flushing patient: differential diagnosis, workup, and treatment. Journal of the American Academy of Dermatology, 55(2), 193-208.
Huang, K, Dellon E (2019). Increased Prevalence of Autonomic Dysfunction due to Postural Orthostatic Tachycardia Syndrome in Patients with Eosinophilic Gastrointestinal Disorders. J Gastrointestin Liver Dis, 28(1), 47-51.
“As patients, we can feel like our bodies are truly self-destructing! I remember the days that I asked my doctors to please put me in the hospital! But because they didn’t understand why I was so sick, they couldn’t help me. It was only by putting aside the subjective misery and peeling apart the presentation in a very objective way that it was possible to get answers. We are here to help you get those answers.”
– Diana Driscoll, Optometrist
POTS RECOVERY
meet The Patients
Kerry’s Story
“They say that words can be impactful, change one’s view of things, and help you to see in a way that maybe you haven’t before. Therefore it is so important that I get this right even knowing words will never suffice. However, I am writing down my experience to not only tell you that Dr. Driscoll has literally saved my life, but that you can feel better too and you have to be your own advocate to do so sometimes. DO NOT stop believing you can get well. I promise, you can.
I saw Dr. Driscoll and her amazing team at POTS Care only a month ago after suffering terribly for 4 1/2 very long years. I believed I had POTS (I had done enough research to know it was at least a possibility), yet I had also gone the way most of us do initially – to the doctors we know and hope to trust. Unfortunately, with this condition, most of the doctors simply don’t understand that one person could actually suffer from so much and daily. Additionally, you are shuffled from one specialist to another and they often are not communicating between each other about their findings. They check their box and send you yet again… on your way.
I spent thousands and thousands of dollars to try to get well. I was put through a blood patch procedure in my spine because my doctor “thought” I had a CSF leak. No real evidence of one, he just “thought” so. I had seen every doctor in my town and doctors at UCLA and Cedars Sinai. Cardiologists, neurologists, ophthalmologists, ENT, nephrologists, GP’s, rheumatologists, and more. Not one of them was able to help me at all. I was prescribed many beta blockers and other drugs that in the end made me much worse. Hence? I even developed a fear of taking medication.
That was 4 1/2 years ago and as I mentioned, I do in fact have that condition in conjunction with Inflammatory POTS. My life was literally taken away from me as I knew it and it could have been helped and saved that day. I was terribly ill chasing about 100 symptoms daily.
I had read about Dr. Driscoll for years and there was something special about her. Something pulled me to her. A connection, understanding, warmth. I couldn’t nail it at the time but they ALL turned out to be true once I met her.
As I mentioned earlier, I had hoped my doctors would help so I waited 2 1/2 years to reach out to her. I IMPLORE you not to do that. These are days you will never get back. One day I took the leap because I couldn’t live my life the way it was anymore and knew I no longer had anything to lose. I am so blessed and grateful that I did!
Dr. Driscoll and her team work so carefully together for YOU on YOUR case and do not shuffle any tiny piece aside. They put every symptom you have ever had, examine clearly your MRI’s, CT’s, blood work, eye exams, and put it all together in a way any one of your doctors can’t and probably will never do. Not because they don’t want to or don’t care – It is because they don’t understand the entirety of the disease and how it can be helped.
I would be remiss if I did not mention Sarah. She is a huge part of my success, extraordinary at what she does, and is always there for me during this time of recovery. Together they are literally changing people’s lives and hopefully one day, having done so enough times that the knowledge of IIH and POTS has made its way to every doctor’s office in the country, possibly the world. We as the patients who are suffering so much deserve that.
Thank you from the bottom of my heart Dr. Driscoll and the team at POTS Care! You will forever be in my debt.”
Anna Mae’s Story
Hi to everyone, I wanted to let you know that I’m happy with the help I got from you… I’m keeping on improving, it is a slow recovery, but I really appreciate all you did for me.
I’m taking my medicines every day, consistently, and I know that is important. Diamox, for one, helped so much with my high pressure. I really like the audios too. They are very informative and helpful.
Thank you so much for your help and for being available if questions arise. I’m so glad we chose POTS Care for my care!
Maria’s Story
“POTS Care is a team I learned is worthy of my trust. The most important thing for me was the genuine loving and compassionate attitude flowing from everyone.
Dr. Driscoll has gone through some of the worst things as a patient herself, and thereby blesses her patients with warmth foreign to some doctors I’ve worked with. God is constantly creating beauty out of ashes by the way He uses Dr. Driscoll to reach out to her patients.
Dr. Driscoll and her team remained smiling and caring even when I thought I threw them a curve ball. They rode the waves with us! She is very knowledgeable, having been a part of all the research.
I am so thankful Dr. Driscoll understands POTS and its underlying cause in each individual case. May all the honor be to God!”
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