Mast Cell Disease & Brain Fog: What To Do When You Can’t Think Straight

 

I didn’t hear the term, “brain fog” until I watched the video series about mast cell disorders and heard Dr. Theo describe it in a patient of his. He also wrote a paper on it and describes brain fog as:

…a constellation of symptoms that include reduced cognition, inability to concentrate and multitask, as well as loss of short and long term memory. Brain “fog” characterizes patients with autism spectrum disorders (ASDs), celiac disease, chronic fatigue syndrome, fibromyalgia, mastocytosis, and postural tachycardia syndrome (POTS), as well as “minimal cognitive impairment,” an early clinical presentation of Alzheimer’s disease (AD), and other neuropsychiatric disorders.

Aha! It has a name! I thought.

Brain fog has been plaguing me off and on throughout my entire life. I had a lot of fainting and seizures as a little kid so I grew up thinking I had some sort of concussion syndrome as a lingering after effect. I never suspected it was part of a much larger, much more complicated disease. I just thought I’d hit my head one too many times as a child!

If only..

Now I understand what’s happening but it doesn’t make it easier. Living with brain fog is a nightmare. You can go from thinking sharply and clearly to feeling like a dementia sufferer within minutes. Once you’re there it’s hard to function and it can impact your life pretty severely, depending on the severity of the brain fog.

So what causes brain fog in mast cell disease patients?

Inflammation seems to be the culprit. Dr. Theo explains:

Brain “fog” may be due to inflammatory molecules, including adipocytokines and histamine released from mast cells (MCs) further stimulating microglia activation, and causing focal brain inflammation.

So is there any thing we can use to reduce or eliminate brain fog in mast cell disease?

Antihistamines are the first medicines doctors generally recommend, and a combination of at least one H1 and one H2 twice a day seems to work best. Some of us need very high doses. For those of us that can use them, NSAIDs are supposed to help with inflammation (I can’t take them). Singulair helps, too, if you can take it (again, I’m finding I can’t – yet). Quercetin, a natural flavinoid, is also highly recommended.

I am still experimenting with Singulair and I also had mixed results with quercetin. I’m not taking either now because I find it almost impossible to find medicines that don’t trigger me because of the fillers, but for those who can take it, quercetin seems to really help with brain fog. It really helped me for those first few days!

There is another flavinoid that looks promising, too, according to Dr. Theo:

A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain “fog” in mastocytosis patients. Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain “fog.”

According to Wikipedia, dietary sources include celery, broccoli, green pepper, parsley, thyme, dandelion, perilla, chamomile tea, carrots, olive oil, peppermint, rosemary, navel oranges, and oregano.

I eat quite a lot of most of those thanks to my affinity for Italian food, so I am already getting luteolin, it seems. Not enough to stop the brain inflammation, though, so I will be trying the name-brand Singulair next to see if it works. If not, I’ll probably try compounding it.

If that doesn’t work then I’ll try quercetin and luteolin to see if they work, if I can find a “safe”, un-triggering source, that is.

I’m pretty desperate to control the head-to-toe inflammation and by doing so I will hopefully gain control over this (insert bad word here) brain fog.

 

 

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