I haven’t been formally dx’d but I have all the POTS symptoms, like a lot of MCAD patients do. I don’t need a tilt table test to verify that if I stand up too quickly I feel lightheaded and will faint and even have a seizure when it’s bad. I certainly don’t need another bill from yet another doctor.
My neurologist, the one I fired after my third appointment because he asked me if I knew if mast cells were in the brain (um, hello? my insurance company and I pay you $350 an hour to know that **** and you should have looked that up after my first visit! Sorry, rant over. 🙂 ), told me to increase my caffeine intake to see if that helped with the POTS symptoms.
So I took his advice, of course, because I was desperate to stop fainting or wanting to faint. I didn’t want to deal with another pill and all the potential triggers in them so I happily began to consume large amounts of freshly brewed almond milk lattes (yummm!).
They were all made right here at home in my cozy little coffee hutch/barista stand that I set up just for this purpose:
I have to stop here and say I have had a couple of emails asking me if the coffee triggered me because it is supposedly high in histamine and I honestly answered that I didn’t know about that but would look into it, and all I can say is it doesn’t make me sneezy or hivey and it definitely helps alleviate my POTS symptoms.
I did do my homework, of course. After reading the advice given regarding coffee in the official MCAD Diet Guideline, I decided to only use Maxwell House brand to see if they were right that it is the best one for us. To my surprise, they were!
I don’t get triggered by coffee at all, at least not Maxwell House coffee, thank the coffee gods above! I do miss my fancy brands and I may try a few to see if I can find one that works but since Maxwell House tastes pretty good and doesn’t trigger me, I will use it.
I don’t question why I am not triggered by coffee, I am just honestly thankful that I’m not. Not only does it help me, but I am so glad I didn’t have to dismantle my lovely little (big!) coffee hutch permanently since I’m the only one who loves lattes here. I had just bought my fancy lattee/espresso machine and converted our old entertainment center into my very own home barista stand because I love coffee so much so it was jarring to think I may have to give it up!!!
I have always been a super fan of the sacred bean though, but it’s no surprise since I come from a family of coffee consumers. My mom drank at least a pot a day and my brother drank up to ten (!) pots a day when he was in the Air Force (he told me this himself!). I think they unknowingly drank copious amounts of coffee to stave off their own MCAD symptoms, to be honest. They also smoked like chimneys and I think it was to quell the incessant panic and anxiety.
Maxwell House, just like the experts said, doesn’t induce anxiety at all in me. Apparently I’m not alone, either (I am not getting paid here, honest! lol) because it’s recommended by MCAD experts.
So the bigger point of all of this is that I have been drinking coffee daily since my diagnosis, except for a brief period when I did an elimination diet and tested it and it didn’t trigger me at all when I reintroduced it, in fact, quite the opposite. I experienced an almost immediate return of my POTS symptoms when I quit drinking it!!
Yep, if I don’t drink coffee, it all comes right back! The dizziness upon standing too quickly, the vertigo even when sitting, feeling lightheaded and woozy for no reason whatsoever. The racing pulse, skipping heart beats, it all comes right back and it’s CRAZY!
Just mad. Absolutely mad.
I can’t believe that my symptoms are just hours away from bubbling to the surface at all times if I don’t take ALL my medicines (coffee is my unofficial eighth one). The gravity of it made me break down and cry my eyes out earlier but I had to stop myself and get a grip because if I let it make me sad or angry I get even more triggered. It’s just a vicious cycle.
It does make me humbly respect my medications, though, including (yep!) COFFEE.
xo Michelle Dellene