Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) are frequently playmates in a patient’s system. Their interaction can worsen symptoms and send patients through a maze of doctor visits trying to figure out what’s happening as their quality-of-life decreases.
When you get playdates like this going in your system (these are not the only chronic conditions that often occur together), diagnosis can be difficult and take weeks, months, or years. It’s not the kind of thing our diagnostic system is good at. And once you get a diagnosis, the only solution may be to manage the conditions.
Have these? Want to scream? Yeah, I know. I’ve had two conversations this week with people who walk this tightrope all the time. It can be hard and exhausting. If you then meet resistance from health professionals when you request measures to avoid items that trigger a flare, it can be beyond frustrating. And, if you’re female, your concerns may be dismissed altogether.
None of this means you’re crazy. If you feel dizzy, you feel dizzy. If your right eyelid sometimes swells and feels heavy, it does. If you have rashes that will not go away even with prescription medications, there’s probably a trigger that’s causing a flare of some sort. If the room spins or you faint, it’s probably not all in your head. And yet, some physical reactions can stimulate emotional responses.
So what should you do?
Visit a physician. If you suspect you have POTS, MCAS, Ehlers-Danlos Syndrome, or Long COVID, search for physicians who specialize in these conditions. If there are none in your area and you have the ability to travel, visit one in another area.
If you can’t afford to travel, but have a medical school nearby, reach out to their research arm or see if you can get your case presented at grand rounds. The goal is to get more eyeballs on the problem.
Learn as much as you can. While it’s best to leave the diagnosing to the professionals, you are a part of your own health team. If you have information that you believe may help, it’s okay to provide that. If you have questions, ask them.
Visit the National Organization for Rare Disorders https://rarediseases.org/understanding-rare-disease/undiagnosed-diseases/
Check out The Dysautonomia Project https://thedysautonomiaproject.org/ for educational information on disorders of the autonomic nervous system.
See if the Autoimmune Association has relevant information. https://autoimmune.org/
But keep in mind that when two conditions coexist, diagnosis may be more difficult. https://www.eds.clinic/articles/eds-pots-mcas-trifecta
Follow dietary recommendations that can help. With MCAS, this means avoiding histamine containing and liberating foods. It may also mean avoiding certain medications and ingredients in personal care products. With other conditions, there will be different lists.
Talk to people. Find an existing community or compare notes if you run across someone else who experiences similar symptoms. People who are managing related conditions may be able to suggest triggers you have overlooked or symptoms that you thought were unrelated.
Finding a community that’s helpful can take some work and flexibility, but it’s rarely impossible. Stick your toe in the water and only wade in when you feel comfortable.
Establish a routine. Include eating at fairly regular intervals, drinking plenty of water, good sleep habits, and down time to let your system regroup.
Change what you can. If there are stressors you can let go of, do. A system that’s already overloaded will be more likely to have a lower threshold for triggers.
Trust yourself. I know when your gut is cramping and your vagus nerve has sent the room spinning, you may feel both sick and crazy. You are not. Something needs attention.
When something needs attention and you find yourself being summarily dismissed, you may need new playmates. A supportive community and a curious healthcare team can be just what the doctor ordered.
