Mast Cell Disease & Dysautonomia (POTS): A Coexisting Condition

Dizziness, lightheadedness, and fainting (or feeling like you are about to faint) are 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 them separately but describes dysautonomia as:

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 these symptoms, including lightheadedness and vertigo, and I faint, too. Sometimes when I faint I have seizures. These are not electrical seizures, I’ve been tested for those. This seems to be inflammation-driven and also lack of blood flow to my brain. If I am upright or even have my head slightly elevated I will have a seizure. Otherwise I just faint and then wake right back up.

I had the seizure problem as a baby which lasted until I was about six and then it started up again a couple years ago, although looking back I suspect I was having “absence seizures” as a teen.

I get all of the symptoms of POTS as described by Dr. Afrin, too. I  get skipping heart beats, a racing pulse and hyperventilation when it’s bad. I can’t lift my arms up for long or I want to pass out. Sometimes it feels like I’m having a heart attack, but I’m not. Before I faint or seize I feel super thirsty, too, which makes sense since the part of the brain (the hypothalamus) involved in POTS also controls thirst, hunger and these other autonomous activities.

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 answers.

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.

My symptoms are alleviated when I practice strict trigger avoidance and 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 as long as I stay on my other medicines while avoiding triggery things, 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!

 

 

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