Yesterday I met with my immunologist to discuss my options for tackling this head-to-toe inflammation I am still getting whenever I’m triggered. Every system gets inflamed and this last week it was definitely affecting my brain the most.
I always know when it’s happening because my hands and feet get ice cold and also go numb with pins and needles. My gums start to bleed easily and my esophagus swells up until I go hoarse and have a hard time talking. My ears get gummy and they feel clogged. Sometimes they start ringing. My nose gets really stuffy. My intestines slow way down and my left hip starts to hurt really bad, to the point it’s painful to walk without a cane. All my joints suddenly ache and I feel like I’m eighty years old and moving through thick mud.
Everything gets inflamed so I feel it everywhere.
Last week I had all that plus a really bad migraine and my neck was super stiff. My brain felt like it was pulsating, too, which has happened off and on my whole life but this time it was particularly bad. I had vertigo really bad, too, and had to lie still in a dark room until it all passed. I told my doctor it must be how having meningitis feels, without the high fevers. I did feel a bit feverish, though, and my underarms ached as if someone was lifting me up with their thumbs up each one.
First he had me increase my H1 and H2’s because of the histamine response I also had (hives, itching from head-to-toe, etc.) and was still having right in front of him. I had horrible brain fog and could not think of which words to use and I had scratched two red, angry lines onto my skin which stayed for a good 10-15 minutes while we talked. They burned badly the entire time, too. Those were a sign my dermatographia was flaring.
We discussed the inflammation issues as well and he gave me another Singulair prescription. I had tried it before for a few days but quit because I had also started Doxepin at the same time and wanted to try them separately to see how I felt. I never did go back on the Singulair so with his approval I started it again last night. That makes seven medicines now!
The pill shouldn’t be a problem for me even if it has some of my trigger proteins because we increased my H1 and H2 at the same time so hopefully that will take care of any reaction the pills themselves provoke, which is a real possibility with this disease. At least he is honest with me and admits so much of this is as new to him as it is to me. He’s really great, though, and we are learning together.
He asked about possible triggers and I explained I thought it was my own estrogen causing at least some of it. The other is I can’t seem to leave my home without something triggering me, so I told him how I’ve become a recluse just to stay somewhat safe.
So I left feeling pretty hopeful. I took a Singulair last night and interestingly, my granuloma annulare rash is nearly invisible this morning. It was red and angry and even itchy these past few weeks, so that’s a REALLY great sign since it’s pretty much a gauge to what my mast cells are doing.
On that note, I’ll definitely update here as I monitor any further progress with Singulair but so far I’m liking what I see. Only time will tell, of course.
What about you? Do you take Singulair for MCAS? I’d love to hear your experiences with it! You can contact me by using the email in the Contact Me drop down under the About link at the top of this page. Also, won’t you please share this post on social media? The purpose of this website is to bring awareness to mast cell disease and I can’t do it alone. I rely on dear readers like you to help spread the word. Thanks and remember, we’re in this together!!
xo Michelle Dellene