I have so much to write about. I keep thinking of new things I need to blog about, but I never get it done.
So, I guess I'll start with a subject I've been trying to avoid for at
least a year now. It's only now that it seems I can't completely avoid
it anymore. I may have another condition. No, I'm not
diagnosis-hunting. It's just that there is another condition that is
now being linked to the whole EDS/POTS/Chiari/CCI group. And I
absolutely would not care for a second unless I were actually having
symptoms right now, which unfortunately, I am. I also would not care
unless there was a chance something could be done about this that would
improve my level of functioning and quality of life.
That being said, the name of the condition is "Mast Cell Activation
Disorder" or MCAD. I will add some informational links here soon. In
the meantime, if you are looking for information, the disease functions
very much like Mastocytosis. There is not much information on MCAD
(also called MCAS for "Syndrome".) But it is still being treated. The
current understanding is that MCAD is caused by over-reactivity of the
mast cells to many benign triggers. If you've known me for a while, you
know that I've had quite a few odd and even dangerous reactions to
medications over the years. You may also know that my throat closes up
whenever I'm around cigarette smoke. These could potentially be mast
cell reactions. You know how I have had a variety of food intolerances
over the years? These could potentially be mast cell reactions.
A seemingly insignificant part of my medical history is my allergies.
As a child, I tested positive for every major allergen. During
college, my allergy symptoms worsened, so I was retested, but found to
have no true allergies. This would be an important part of my mast cell
history.
If it were just these things, I still probably wouldn't look into this
diagnosis, because who needs another diagnosis? But, mast cell
reactions can also include: persistent fatigue, brain fog, headaches,
tachycardia, sudden drops in blood pressure, fainting, cognitive
impairment, vision problems, nausea, problems with anesthesia, decreased
bone density, shortness of breath, temperature sensitivity,
gastrointestinal pain, and bloating, If these symptoms are being caused
by inappropriate degranulation of mast cells, treating these overactive
mast cells could be an important part of my treatment.
There are a few easy treatments that doctors often try as a way to see
if MCAD should be considered. If you respond positively to these
treatments, you probably have some form of mast cell disorder.
The first treatment is with OTC Histamine blockers. H1 blockers include
typical allergy medications, like Zyrtec, Claritin, and Allegra. H2
blockers also block histamine, but in the stomach. These include
typical antacid medications, like Zantac and Pepcid. So, to treat MCAD,
you start with daily use of H1 and H2 blockers.
The thing is, I've been taking these for a while (since I've had an
inkling that this might be part of my medical puzzle), and I was still
seeing an increase in symptoms.
So, I often have to take Benadryl, an anti-histamine, to resolve a
reaction I am having to a known or unknown trigger. Since this is
happening more often, I decided that I need to start working on figuring
out my specific triggers, and avoiding them when possible.
Every mast cell patient has different triggers, so it's important to try
to find your individual triggers. Sometimes, it's obvious what has
triggered me, like medication reactions. So, I need to avoid
medications that have caused reactions. I have known reactions to
medications like Morphine, Compazine, and a few others.
A huge mast cell trigger is fragrance. I have known of my sensitivity
to strong fragrances, like air fresheners, perfumes, and hair sprays,
for a long time. But I need to take these more seriously now, and avoid
fragrances whenever I can. So, we're trying to switch over to
fragrance free products.
An easy trigger for me to avoid is alcohol, since I've always known I've reacted negatively to alcohol, so I never drink.
The trickier triggers to figure out are food triggers. The most common
triggers seem to be foods that are high in histamine, high in
salicylates, or high in tyramine. This includes a lot of foods. I only
need to identify which ones are my personal triggers, not actually
eliminate every possible food. It's still a bit tricky. A strict
elimination diet would be the most effective way to identify my
triggers. I already eat a very regular and simple diet, so I should be
able to figure out some of my triggers. One obvious group of foods is
fermented foods. So, I have to give up my Greek yogurt. A couple other
very high histamine foods are tomatoes, strawberries, and shellfish. I
can avoid those pretty easily. The rest of it will be trial and error,
which I'm working on now. Most trigger foods cause me to get an itchy
nose and throat, so I am keeping a food diary and taking note of
symptoms. I recently had a pretty dangerous reaction to a protein bar, with my throat getting all itchy and swollen, my airway constricting. Had to take Benadryl for that one.
Hopefully, this will be all it takes to reduce the frequency of mast
cell degranulation, which actually increases your ability to tolerate
small exposures.
If these measures don't work, there are plenty of other things to try.
I'm am using NasalCrom, an OTC mast cell stabilizing nose spray, and
Ketotifen opthalmic, an OTC mast cell stabilizing eye drop. If I need
further help, I will have to see one of the few doctors willing to treat
this disorder. Other potential treatments include: Singulair,
GastroCrom, and Doxepin. A commonly used medication that is most
effective at stabilizing mast cells in the whole body is Ketotifen oral,
but it is not yet available in the US.
Okay, I know that's a ton of information. I've got a terrible headache.
So, that's all for today. I know this is a ton of information. This
is what I'm working on right now. I'll let you know how it works for
me.
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