Second screenshot is citation source, photos and screenshots by Ariana.
Allergies can come and go. For an item to which a person can avoid exposure, sometimes in as little as a year a person may no longer react to the item. My life has taught me this many times over. My earliest memories are filled with hives and treatments and anaphylaxis (I literally lost consciousness and ended up in the hospital and on weeks of medication after my first bee sting). I wasn’t overly disappointed when, as a toddler, I began reacting to things with eggs (hives and lots of them). I hated the texture (still makes me nauseous), I hated the taste. But, loosing baked treats and certain candies was definitely a hardship I remember focusing some negative energy on. The doctor my mom took me to at the time recommended keeping me away from eggs for a couple years and then trying to reintroduce them. I was so scared the first few times I ate anything with eggs, but…turns out, after those two years or so avoiding them, I haven’t had any issue eating eggs since.
In that spirit, I have been retrying CBD every year or so. My previous reactions to CBD have included hives and respiratory symptoms with elevated heart rates. That being said, they were mild enough and the amounts were small enough, that I felt comfortable trying this outside of my allergist’s office as long as my husband was going to be off from work and home for a few days. He works in health care and has all the training necessary to keep me safe for anything up to the level of needing to use my epi pen on me, so that’s my nod to prudence. Stevia, that caused swelling on my face, so I am not crazy or brave enough to try that one anywhere but my allergist’s office.
I started out with very small amounts of the CBD. No reaction. Increased amounts. No reaction. Day three of all of this, still no reaction. And I started to notice something odd. I felt like I had too much antihistamine in my system. Like, way too much. And I could literally handle any fragrance, including those I haven’t been able to handle with a bunch of antihistamine in my system since I developed Mast Cell Activation Syndrome. Floral perfume? No sneezes, no sniffles, no problem. I even slept in it and woke up just fine. L’Oreal Ballerina Shoes, my previous favorite frosty pink lip? Also not so much as a reaction. Both of those on while standing over an incense cone on full burn…my nose had never been so clear.
Mind blown. CBD can calm down mast cells. And I didn’t know. I got on-line and started googling once I was experiencing all of this while feeling like all of a sudden I had way too much antihistamine in my system. It’s always possible my allergist mentioned it to me and I didn’t recall, the POTS that came with Mast Cell Activation Syndrome has definitely impacted the quality of my memory (though in general that has been improving over time as my symptoms have been well-managed). But, since it wasn’t gone over with me with the same depth that the possibilities of biologics were (because I definitely remember those conversations), I feel like it’s maybe worth sharing so that each of you can share if you run into somebody else with this condition.
Some of you may recall, but my allergist tried me on a biologic last year to try and calm my mast cells down. And drum roll, I had an allergic reaction to it. So, that has effectively left us with nothing but antihistamines and a lot of them to manage my condition. And even with 6 different antihistamine pills in my system during a 24 hour period when I first developed Mast Cell Activation Syndrome (2 Pepcid, 2 Allegra (the 24 hours ones), and 2 Vistaril) I couldn’t handle Ballerina Shoes without sneezing, a runny nose, and respiratory discomfort.
And then I started getting sick last Saturday. Most likely I caught the same virus Tony had started getting sick from a few days earlier with respiratory symptoms. But it wasn’t easy for me to avoid a freak out that included stopping the CBD as a precaution, because experience has taught me an allergic reaction can happen at any time. My allergic reaction to Clindamycin happened on day 7 of use (literally the hives were so bad they broke blood vessels, most of my skin was purple and red for a month). As I wasn’t experiencing any other symptoms of allergy and my congestion would improve after the CBD, I figured I was good to keep using it…but I definitely had to work really hard through the worries and fears and what if’s because of my previous medical history and experiences.
And today, still not fully recovered (nobody in our house is, even Tony is still congested and coughing and he started getting sick 4 days before me), but I can still wear Ballerina Shoes without a runny nose. Walked outside with Tony today in peak allergy season for me and not a sniffle or a sneeze (and even with all of the antihistamines I was on that wasn’t happening), literally this is the worst time of year for me to live here and ever since I developed mast cell activation syndrome, I wake up with super puffy eyelids, sometimes so bad they’re almost swollen shut. Yesterday was the first day in years I didn’t need caffeine eye patches to tame that just so I could look normal. And I’ve already cut the amount of Vistaril I was on (I’ve been on 3 a night for nearly 2 years now) in half and I’m still doing fine.
And, even though I decided to skip the makeup today since I slept in, I’m wearing Ballerina Shoes while I type this. That’s my equivalent of “pinch me, am I dreaming?” Internal happy dance in progress! So, this is what I am most grateful for right now, this experience, this hope, this moment.
I still, of course, don’t know how all of this will turn out long term. This is a gift I honestly didn’t expect. Once I am fully over the viral crud, I will know for sure how much antihistamine I am going to be able to eliminate. There are still so many questions, and my allergist and I will need to have a talk in person over all of this, because I don’t know if this is something I will have to take the rest of my life, or if eventually the mast cells will be calmed down long enough that I can be weaned off the CBD? Maybe we can try allergy shots with this? I couldn’t benefit from them before, they made me too sick because of how hyperactive my system was and I could never get worked up to a maintenance dose.
I don’t really know. But I hope it continues. CBD is not cheaper than those antihistamines, not even close…but if it can make this kind of difference, it’s worth it to me. Though, CBD is definitely cheaper than biologics, so it might be worth it to anyone with this condition to try. And because possibly this may not be emphasized enough as a possible treatment for Mast Cell Activation Syndrome, that’s what I wanted to share this week, that information and this experience.