Feeding the Brain, Stabilizing MCAS

Why the brain is necessary for all of us to function.

For me, today is a day of remembrance. In the past 30 days, I have now attended a memorial and funeral for two parents of different childhood friends, who lost their ability to remember. Alzheimer’s and Dementia have touched so many lives especially people and families that are important to me.

In retrospect it’s been almost a blessing that I suffered an illness that gave me a glimpse into my future with dementia, along with the experiences with my own family members that I had already lost. I was able to provide much needed wisdom when asked on how to navigate some of the “humane” matters with others who were already ill around me.

Until I see the MRI for myself in the near future, I am not going to glorify that the black spaces are now miraculously filled with brain matter for myself. I also will never claim a miraculous cure for anything. I do fully expect to lose my life eventually to dementia, but in the meantime, I’m going to live my life to the fullest and continue to educate myself and others as I find supplements to assist me in healing and functioning.

When researching an illness, I research how the brain operates or dysfunctions to cause said illness. Interstitial Cystitis is an actual physical dysfunction of an organ; however, the brain operates histamine reactions and releases that activate and deactivate my Mast Cell Activation Syndrome. In fact, almost ALL of my illnesses with the exception of the interstitial cystitis all tie into the brain in some way. Mast Cell Activation Syndrome, Neuropathy, Fibromyalgia, and obviously Dementia.

A little survey and digging in the Mast Cell patient group I participate in, and I sat one day and wrote down a list of 240 various different illnesses on the list (when someone polled our group on the various diagnoses’ we all had, including arthritis, and they all tie back into the brain. When I discovered that, I knew then, I had to start safeguarding my mainframe, as soon as possible, and with fierceness.

This turned me onto a host of different things that I needed to address. Cognitive Function was certainly one, and regaining my control of my memory and recovery of lost memory was another. Then regaining my energy, and focus. I found a few supplements that I simply “tried” to see if it did anything for me. The benefits had to be WORTH it, and the side effects had to be nothing or very limited for myself.

I took some of these for a few months, and started making HUGE gains, then I did the worst thing I could do, and stopped the supplements. Why you ask… because I’m the guinea pig, I’m my own test subject, and what I found was I began to degrade as quickly as I had started making improvements. In September of 2022 I stopped the supplements, and by December, I had a host of symptoms begun again, like the ADHD, the ability to not be able to clearly think, the litany of aches and pains, on top of forgetting my daily schedules. I finally admitted to my therapist what I had done at that time, and she said that it was “Invaluable” information to include in my research, but highly suggested that I begin them again. I really didn’t need them to tell me to, because that morning before I admitted to myself defeat, I may have to permanently keep myself on the Amazon Subscribe & Save program for these pills. However, I am COMPLETELY 100% totally okay with these results, it is a far car better than a ton of prescriptions from the doctors to mitigate symptoms, multiple doctor visits, and ER visits for allergic reactions and mania, or health anxiety.

My last appointment was this past Thursday, and after yet another introduction of the polyphenol Green Coffee Extract, gave me everything that I needed. Her response was to me, “You are oddly more normal, calm, controlled.” I chimed in, “I can also use BIG WORDS again!” We giggled together on that one. One day, I may ask her to actually write me an excerpt about watching my decline and then my regrowth, it’d be interesting to get it from her perspective.

My journey has been slow in progress because I am researching, and I am my own test subject, and I suggest that you do the same, research, and trust your body. You know your body best.

What has gotten me to this progress so far has been the following regimen:

RUTIN , FORSKOHLII and my H1 histamine blocker Cetirizine 10 mg along with my H2 Histamine blocker Famotidine 20mg

Now each person is different, and only respond to certain antihistamines, to find balance, sometimes you need to take more than one of each antihistamine. My balance stopped at 4 times a day, half an hour before I ingest any food, breakfast, lunch and dinner, and before bedtime. My antihistamine intake is 2 Cetirizine and 3 Famotidine every time I take a “dose”. That is what keeps me from reacting to foods, bug bites, and various other things that my mast cells deem too much histamine for the day, oh and the biggest “histamine release” is when we get sleepy and go to sleep, that is the necessity for taking them at night.

**I recommend you take a look at my blog post about Antihistamines. Take notes on your major symptoms, and start with looking at what receptor blockers are going to get rid of those reactions first.** As always, check with your physician if you are on anything. I’m not a licensed physician, this is just what got me to where I am at.

Wearing a mask help save me, but not from Covid…

By unpopular demand….let’s discuss the facemask!!! MCAS and how it can help.

Before my death-defying Emergency Room visit, my regular practitioner and I had noticed a correlation somehow between mask wearing and my health. We hadn’t put all the of the angles together, but we had noticed a difference. It just so happens that my cousin, caretaker, had convinced me he needed a ride or die partner while I was losing my mind. We would regularly visit a neighboring state about an hour or so away, and he would door dash, and got a little four-hour retail job to help a friend at her store. So, he convinced me to come along. DURING A PANDEMIC.

After all, at this point, my capacity for critical thinking wasn’t there, so I was like, “What the hell, not like I’m doing anything anyway, I’ll sit in a truck.” Four hours sitting in a vehicle isn’t really fun even for a crazy lady. I would have rather held that banana in my mouth for four hours all over again, well not really, but I found myself wandering into the store and organizing product on shelves. That started the beginning of me getting better, and then the masks were introduced.

Eventually it became clear that the more time I spent out of my own house, and wearing a mask, my health improved! Little did many know that the World Health Organization and Europe had already figured out that Mast Cell Activation patients who were already in a flare up, were sort of “immune” to the first strain in the pandemic. We were already in a cytokine storm of sorts, so it couldn’t give us another one. How cool is that!?

Why are the masks so important? It not only blocked the germs of others, but it was blocking breathing in the allergens and some neurotoxins in the environment. I highly encourage all Mast Cell Activation people to put that mask on your face and wear it with pride. I know, I know, you literally HATED those things during the pandemic, but I’m telling you, didn’t you FEEL better? I still took mine off at home and had little reactions and I slept constantly after my excursions to the store, but I was improving, and impressed, along with my doctor!

When the freight manager came back to the store after her leave, she immediately asked, “Why isn’t this woman on the payroll?” I found myself working a job again after three years of not being able to by accident! Turning in the application blew them all away, because corporate said, “You are way over-qualified for this position, you should be a manager.” I responded only with this, “Not at this time.” When I felt it was time, I transferred back to my own state and took on a management position, but I was not ready then, my brain still wasn’t functioning the way it was supposed to but I could focus on OCD/ADHD type tasks of organizing and stocking shelves, and I was good with that. Anything to keep me moving.

This is me Christmas of 2021, I was in the process of healing.

***Disclaimer: Remember, I’m not a doctor, I’m just a patient who was fed up and advocating for myself. I share this information solely because I was encouraged to. From my research and experience, I discovered Mast Cell patients aren’t really immune… or at least not me. I wasn’t in a flare up, when I got the second one, I knew how to cope with the cytokine storm, so it was short lived for me. I was blessed with knowledge before it ever became a big issue. Some others weren’t so lucky around me, and when I begged and pleaded with them to do things for themselves to mitigate the cytokine storm, they didn’t, the results were life damaging and changing for them.


Happy Holidays and All The Best

Today I need to take a few minutes and give my readers an update on life. Life has been a struggle for others recently, I have taken time out from writing, authoring, and blogging to actually assist family in their time of need. I actually had to return to my previous position before I became unwell 6…

Mental & Emotional Journey of Fibromyalgia

Fibromyalgia from a patient’s perspective is probably one of the hardest syndromes to navigate. Not only for patients but also for doctors. What was once thought to be a dysfunction of the peripheral muscoskeletal system has now become an obvious disorder of the entire muscoskeletal and peripheral nervous system. This leads to chronic widespread pain,…

Why do we not know about this? Black Seed Oil

A few days ago, I ended up with this lovely sinus migraine. Now remember, my journey is slightly different than most. Mast Cell Activation can make all kinds of things swell and inflame when they are agitated. My ears were feeling clogged, my drainage tubes in my neck hurt, my whole head hurt. Not acetaminophen…