Mast Cell Disease & Neuroinflammation: Stuck In Seizureville Again

I’ve had three pretty bad seizures in the last week and my brain just isn’t able to fully reboot itself because there’s not been enough time between them for that to happen properly. Each seizure has been worse than the one before it and each brings with it more lingering problems, it seems.

The last one has left me with some left side peripheral vision loss and at the same time I was seeing strange patterns and even faces everywhere I looked (wall, carpet, ceiling) for a couple hours afterward, along with the other post ictal stuff. My entire left side is still weak and I am not quite back “online” yet and it’s been two days now since that one left me on the floor, fully conscious for a change (not fun!!), seizing hard and saying “um” over and over like a crazy person.

I’m doing everything in my power to prevent another one and also trying to understand why this is happening. I mean, I am sure it’s my MCAS but what exactly is causing these seizures to return and then get worse again after I “outgrew” them in childhood?

I found some interesting research here:

Prolonged stimulation of proinflammatory signals, by seizures or a persistent proinflammatory situation in brain, may contribute to the establishment of a pathologic substrate (e.g., neurodegeneration, neuronal hyperexcitability, blood–brain barrier damage), playing a role in epileptogenesis and in the acute manifestation or reinforcement of seizures.

So it’s like a negative feedback loop, it seems. Inflammation causes seizure which causes inflammation which causes seizure which…

I’m worried they just won’t stop coming now and the next one will strike any moment, taking me further down the rabbit hole. I really feel like I am on a slippery slope here, and maybe for good reason:

Damir Janigro, a blood brain barrier researcher at Cleveland Clinic who studies traumatic brain injury and epilepsy, has a very different take on how to approach brain diseases linked with inflammation. He considers both of these diseases to be “blood brain barrier” diseases because repeated seizures and traumatic brain injury can damage the blood brain barrier, making it leakier. That means that not only can substances that don’t belong inside the brain slip through, materials from inside the brain can travel to the rest of the body.

“The blood brain barrier shields your brain, which is good for you. But then it’s bad for you if you leak a piece of your brain and this is considered an enemy” by the rest of your immune system, he says. Janigro is part of what he calls a “vocal minority” of researchers who look at inflammation outside the brain as being another cause of inflammation inside the brain—and potentially even a better target for treatment. “Neuroinflammation is probably bad for you. But it’s a very hard target to go after. Everybody who does is surprised that it fails, like the Alzheimer’s trial in pulling amyloid from the brain.”

We’re still early in our understanding of how the brain’s immune system works, when it is damaging, and when it is protective. If inflammation is the common element in brain diseases, it may turn out that understanding how to intervene successfully in one disease will make it possible to use similar therapeutic approaches across many. But, because we don’t fully understand how the unfathomably complex immune system works, it is likely to be a long and difficult journey before we find ways to intervene safely and effectively.

I’m not sure I have time to wait.

I think I’ll play with my curcumin powder even though I’ve been nervous to try it after reading that turmeric is high in salicylates and I am really triggered by those. I can’t find a consensus on whether curcumin itself has any salicylates, hence my hesitation even though it may be the magic cure for this infernal inflammation I’m struggling with here.

Hmm.

Or, rather, ummmm? (harhar)

To be continued….

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