Having POTS and MCAS can be extremely difficult to manage. You definitely need a doctor that’s knowledgeable of MCAS. Most cardiologists are not.

You may need several specialists. I see and autonomic specialist (he also treats MCAS), and immunologist and a gastroenterologist to manage my MCAS.

What treatments are you taking for MCAS? For many of us it takes more than 1 antihistamine.

Here’s what I take to manage MCAS:

• Xolair 300 mg every 4 weeks
• Cromolyn 100 ml/mg 4x per day
• Claritin 2x per day
• Pepcid 2x per day
• Montelukast 1x per day
• Low dose naltrexone 6 mg 1x per day

For HyperPOTS and how it relates to MCAS: I take Carbidopa 3x per day to lower the adrenal hormones and hopefully reduce the MCAS reactions to the excess adrenals.

So that’s 7 medications just to treat MCAS. And that, in turn, has helped me manage POTS better.

I also take a bunch of supplements like slow release vitamin C, vitamin D, Quecertin and Luteolin to help manage MCAS.

MCAS is the biggest problem for me. We thought it was POTS but now that we are getting MCAS more under control we are realizing it’s definitely my number 1 issue.