This is a topic I can write many posts on, and probably will, from experience alone. A cursory search of the medical literature turns up so much evidence that mast cells play a role in both neurologic and psychiatric disorders that it’s easy to see why I was in so much pain, both physical and emotional, for my whole life.
Just reading forum posts and talking to a few online friends with this we all seem to have a few of these same brain related problems in common, which is no coincidence. Mast cell disease causes a lot of diverse symptoms because the mast cells squirt out chemicals that cause inflammation and other issues in every part of your body, including your brain. The histamine alone can wreak havoc, causing everything from brain fog to depression, and it is just one of many chemicals your mast cells are dumping.
Once you understand what’s happening it all makes sense and you can finally find relief, like I did, with trigger avoidance and the right medications — mast cell stablizing and blocking medications, that is. Half of the battle for me all these years has been not being able to find the right combination of medicines but I feel like I am finally on track now and even see light at the end of the tunnel, so there is hope!!
Here are a few common things many of us have sought help for or have been diagnosed with that are caused by mast cell disease and are brain related:
- brain fog
- memory issues
- tingling/numbness in extremities
- general nerve pain
- bipolar disorder
- personality/mood disorder
- schizoaffective disorder
The wrong medicines can make our symptoms far worse, too.
I am not ashamed one bit to admit that over the years from hopping from doctor to doctor looking for answers, I sought out psychiatric help. For about five years I went through the mental health system with no luck whasoever and even was made worse in many ways from the medicines until finally one doctor, who I have to give full credit to, noticed that my psychiatric symptoms were not typical of what he was used to seeing. Part of it was probably because my seizures had returned.
“Have you been tested for temporal lobe epilepsy?” he asked me one day and referred me to a neurologist.
So off to see another specialist who had no answers but did offer to do exploratory surgery if the medicines didn’t work. Yay me! The medicines worked, for a little while, like before, but if I did see any benefit I still felt better in some ways and way, way worse in others. After a few weeks, almost every single time, I ended up covered in hives and extremely sick so I would quit the medicines and go back to avoiding doctors for awhile.
I really tried to dodge the ones who wanted to cut into me, which happened too often looking back.
This merry-go-round is typical for mast cell disease patients, I am learning, which is why I want to bring awareness to this disease by blogging my own experiences. Hopefully someone out there will recognize this in themselves earlier than I did and get to the right doctor (an immunologist!). With trigger avoidance and the right medicines, these and a lot of other symptoms can be brought under control. I am living proof!!
As I said, I’ll write more on this topic in the future. I’m still struggling with a bit of brain fog myself right now but at least the depression and phantom smells are gone. 🙂
xo Michelle Dellene