![\"Vignette](\"https:\/\/www.cooking2thrive.com\/blog\/c2tblog-content\/uploads\/2026\/09\/Game_Play_pair-679x450.jpg\")
<\/figure><\/div>\n\n\nHave these? Want to scream? Yeah, I know. I\u2019ve 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\u2019re female, your concerns may be dismissed altogether.<\/p>\n\n\n\n
None of this means you\u2019re 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\u2019s probably a trigger that\u2019s causing a flare of some sort. If the room spins or you faint, it\u2019s probably not all in your head. And yet, some physical reactions can stimulate emotional responses.<\/p>\n\n\n\n
So what should you do?<\/strong><\/p>\n\n\n\n Visit a physician.<\/strong> 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.<\/p>\n\n\n\n If you can\u2019t 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.<\/p>\n\n\n\n Learn as much as you can.<\/strong> While it\u2019s 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\u2019s okay to provide that. If you have questions, ask them.<\/p>\n\n\n\n Visit the National Organization for Rare Disorders https:\/\/rarediseases.org\/understanding-rare-disease\/undiagnosed-diseases\/<\/a><\/p>\n\n\n\n Check out The Dysautonomia Project https:\/\/thedysautonomiaproject.org\/<\/a> for educational information on disorders of the autonomic nervous system.<\/p>\n\n\n\n See if the Autoimmune Association has relevant information. https:\/\/autoimmune.org\/<\/a><\/p>\n\n\n\n But keep in mind that when two conditions coexist, diagnosis may be more difficult. https:\/\/www.eds.clinic\/articles\/eds-pots-mcas-trifecta<\/a><\/p>\n\n\n\n Follow dietary recommendations that can help.<\/strong> 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.<\/p>\n\n\n\n Talk to people.<\/strong> 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.<\/p>\n\n\n\n Finding a community that\u2019s helpful can take some work and flexibility, but it\u2019s rarely impossible. Stick your toe in the water and only wade in when you feel comfortable.<\/p>\n\n\n\n Establish a routine<\/strong>. Include eating at fairly regular intervals, drinking plenty of water, good sleep habits, and down time to let your system regroup.<\/p>\n\n\n\n Change what you can.<\/strong> If there are stressors you can let go of, do. A system that\u2019s already overloaded will be more likely to have a lower threshold for triggers.<\/p>\n\n\n\n Trust yourself.<\/strong> 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.<\/p>\n\n\n\n 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.<\/p>\n","protected":false},"excerpt":{"rendered":" Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) are frequently playmates in a patient\u2019s system. Their interaction can worsen symptoms and send patients through a maze of doctor visits trying to figure out what\u2019s happening as their quality-of-life decreases. When you get playdates like this going in your system (these are not … Continue reading “Playmates”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2538],"tags":[4091,4090,3168,3795,4089],"_links":{"self":[{"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/posts\/6228"}],"collection":[{"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/comments?post=6228"}],"version-history":[{"count":3,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/posts\/6228\/revisions"}],"predecessor-version":[{"id":6232,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/posts\/6228\/revisions\/6232"}],"wp:attachment":[{"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/media?parent=6228"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/categories?post=6228"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.cooking2thrive.com\/blog\/wp-json\/wp\/v2\/tags?post=6228"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}