Mrs POTS is a bitch

Continued...
My Drs are fantastic and have really stuck with me. Specialist after specialist, emails, phone calls, tests and more tests. Nothing. Well nothing that was causing what I was going through (they tacked on a couple more autoimmune diseases so if you're counting I'm up to a solid 4).

Now, autoimmune diseases they generally come in "packs". They like company. So, yes I have many diagnosis now, but it is for that reason. It's all just cause and effect in a vicious circle. It is nothing unique to me at all. If you meet a human with just one autoimmune disease be surprised.

But, I think we might actually have hit on something. I kept telling my Drs there was "something else" going on. The utter weakness in my limbs to the point where I drop things and feel unstable walking, the complete lack of balance to the point where if I don't pay close attention I will run into walls or tables, the feeling that my body is shutting down and I better get to bed fast, the complete neurological overload when there are too may lights on, or the TV is on too long, or I stare at a computer too long ;) I was convinced these were something else, something we hadn't discovered and out of desperation I went to my GP to beg for genetic testing, to tell her we were moving because of this and to basically just say "I'm not willing to give up, there's something else wrong and we need to figure out what it is." This Dr suggested I monitor my blood pressure...... and there you have it.

This new diagnosis is called Dysautonomia with postural orthostatic tachycardia syndrome (POTS). Basically all of these fancy words mean

that my nervous systems are not communicating with my body to make it do the things it should "automatically" (Autonomia) do, like make me breathe, control my blood pressure and heart rate, control my digestion and so on. Anything your body does without YOU telling it to is part of the autonomic nervous system. When that fails, which apparently mine has, it wreaks all sorts of havoc as you can imagine. The havoc it seems to be wreaking on me is that my circulation is allllll out of whack. My BP can't decide what to do and when I change positions it has a tendency to drop, causing my heart rate to go through the roof and that feeling that everything is going to shut down soon. I do feel like I am going to pass out A LOT, the world goes black or starts spinning but luckily I have not fully passed out yet. (fun conversation to have with your 8 year old by the way- "Ok if mommy passes out don't be scared, just call daddy"). Another issue with your circulation/BP and heart rate not working the way they are supposed to is crushing and debilitating fatigue since your blood isn't getting where it's supposed to go! My brain overload, tremors, heart palpitations, constant fatigue, weakness, headaches and so much more can all be explained by this one word dysautonomia.
Now, I have been here before, I'm not throwing any parties yet, but I FEEL like this is right. I FEEL like this is that something else I kept telling my Drs about.
As a trial while I go through tests with a cardiologist she gave me a medication to increase and stabilize my blood pressure. As you can imagine this carries with it some side effects and management but the relief was instant. Not completely, not even 25% honestly, but enough that I noticed. Enough that it really reinforced that we are on the right track. Increasing dosing seems to increase symptom relief.
But, like I said I've been here before. Grain of salt etc etc.
So, I'll keep you posted. As much as my body will let me anyway.