Dizziness, lightheadedness, and fainting (or feeling like you are about to faint) are apparently all common complaints in MCAS patients.
That’s good to know, because I thought I was crazy until I learned there’s a name for these symptoms which have plagued me my entire life!
Some people call it POTS, some call it dysautonomia. In the glossary of Dr. Afrin’s book, Never Bet Against Occam, he describes it as this:
Also known as autonomic dysfunction or autonomic neuropathy, dysautonomia is just a general term for describing a state in which the autonomic nervous system — that is, the parts of the nervous system that are always supposed to be on autopilot — is not working properly. Dysautonomia can result in one or more of a wide assortment of symptoms including lightheadedness, blood pressure fluctuations, abdominal bloating, problems going to the bathroom (#1 & #2), abnormalities in sweating, heat intolerance, sexual problems, etc.
I get many of those and I faint, too. Sometimes when I faint I have seizures. I had them as a baby until I was about six and then it started up again a few years ago. I also get skipping heart beats, a racing pulse and hyperventilation when it’s bad. Sometimes it feels like I’m having a heart attack, but I’m not. I eventually quit going to the doctor looking for answers (there weren’t any until recently!) and learned to just live with all of these and so many other symptoms of mast cell disease until my diagnosis last year.
Then I finally (Finally!) found relief.
So what causes dysautonomia and how is it related to mast cell disease?
There are lots of known causes of dysautonomia, but in a substantial minority of such patients, a specific cause is never found. So guess what type of cell, when dysfunctional, can also cause dysautonomia? That’s right: the mast cell.
He goes on to say that he has lost count of the number of patients who had dysautonomia and ended up with an MCAS diagnosis. He finished with:
…it’s a matter of whether “dysautonomia” is a good explanation for all or just part of the patient’s symptoms. If dysautonomia explains only part of their symptoms but mast cell disease (or some other disease) explains all of their symptoms, then it’s most likely that the “dysautonomia” is just another aspect of a more all-encompassing disease.
For the first time in my life I am able to keep these symptoms at bay by avoiding triggers (easier said than done!), taking the right combo of medicines and by drinking a lot of coffee. My neurologist recommended caffeine for the dysautonomia symptoms so I drink two or three cups a day (I use Maxwell House as recommended by the Mastocytosis Diet Guideline) and along with my other medicines, it seems to do the trick.
Of course we are all different so coffee may or may not trigger you. As always, what works for me might not work for you but if you have MCAD and dysautonomia you can bring it up with your doctor and work together on finding a solution. Good luck!