I love it when I get mail from readers who let me know that I’m not alone and I’m not crazy.
Even though my son has been dx’d with MCAS, not all of our symptoms are the same so sometimes I’m left wondering if some things I have going on are related to this disease or are caused by something else (or all in my head!).
With all the possible co-existing conditions, it’s hard to know sometimes.
One of the weirder symptoms I’ve had my entire life that he doesn’t seem to struggle with is that I smell phantom smells. Really strong, unpleasant ones, too (why can’t it be lilacs or something?!). They drive me absolutely bonkers and I used to drive everyone around me bonkers looking for the source of these phantom odors. It’s usually the smell of something burning, like popcorn or rubber, and sometimes worse; like death or decay.
I’ve had this happen for as long as I can remember and was told it was because I had a schizoaffective disorder. Oy. Then, at one point, a very thoughtful psychiatrist I consulted with asked me if I had ever been diagnosed with temporal lobe epilepsy, which I hadn’t, but I did have seizures as a child and again later as an adult. So that train of thought sent me back to the neurologists, looking for answers there, rather than in psychiatry.
I’ve had EEG’s done, which showed no epilepsy, but it does all seem to get worse if my mast cell disease is really triggered. Along with these horrible phantom smells I will get visual anomalies, too, which I’ll be writing about soon. Sometimes my pupils will get huge, like saucers, and I feel completely in ‘toxic shock’ where I shiver from my core and my teeth chatter, etc. so I know it’s really, really bad whenever I get to this point and while it was almost constant as a child, it doesn’t happen a lot now as an adult, thankfully.
There is definitely a connection between all of this and my mast cell disease and inflammation going on, maybe in my temporal lobe (?) because as long as I’m medicated and un-triggered I don’t have any of this happening at all! Nothing. My body goes totally quiet sometimes. It’s a miracle, really.
These phantom smells also don’t trigger degranulation themselves, but seem to be a byproduct of it and show up after I’m already sick. The other night, when I woke up in degranulation hell to the smell of campfire smoke filling my bedroom, it wasn’t a phantom smell that time. The hubby smelled it, too. I was sound asleep and whatever was in that smoke, or possibly just the smoke itself, triggered me really badly.
So it is interesting how real-life odors can trigger us and phantom ones can plague some of us, too. Just another facet of this paradoxical disease, I suppose.
Oh, and in case you thought you were the only one with MCAD who is smelling phantom smells, you’re not! Now, thanks to my dear reader reaching out to me this morning, I know I’m not alone (or crazy!) and that there are others like us with MCAS dealing with this particular symptom, too.
Not that I’m happy others are suffering, but that really made my day to know it’s not just me.