I heard from Dr. Makati today. My blood results came in. As it turns out I do not have the condition he was originally testing me for. In fact, the opposite showed. Dr. Makati expected that my blood would show high levels of Dopamine while standing. As it turns out, my levels of norepinephrine were abnormally high while standing, and the rest of the results were quite normal. The clinical diagnosis Dr. Makati provided for me is Postural Orthostatic Tachycardia Syndrome (POTS, which we will refer to it as in order to save the world from looking at TOO MANY LETTERS). According to Dr. Makati, and all of the reading I’ve been doing (because that’s how I am), POTS is an autonomic nervous dysfunction which can often be accompanied by neurally mediated hypotension (NMH). So, this is all of the clinical information about it.
Here comes the realistic what does it mean for Cassie and her family information. Currently, POTS has no real FIX per se. Basically, according to reading and the doc, finding the correct treatment for POTS and NMH is extremely difficult. Over the course of the last 14-15 years of dealing with this, I have actually been on and tried all of the current “treatments” available for POTS. The doctor has encouraged me to return to the medication regiment that I was on previously. He also intends to send me to Vanderbilt University’s Autonomic Nervous Dysfunction research center. They are one of the BEST in the country at helping diagnose, treat, and understand all forms of Autonomic Nervous Dysfunction.
On top of returning to the medication regiment, Phillip and I have decided to throw in ALL of the non medication related treatments. Therefore, I will return to a more high sodium diet with many small meals instead of 3 regular to large meals throughout the day (since eating large meals tends to cause the body to concentrate on digestion instead of regulation of blood pressure), I intend to attempt to exercise daily (provided my body allows for it) even if it means walking the dog around the entire apartment complex at first since good muscle tone helps with the bodies natural vaso constriction, and lastly (for now) Phil and I have decided that I need to look into purchasing medical support hose (which I’m not looking forward to wearing, BUT YES FAMILY I WILL IF IT MAKES ME BETTER).
Also I’ve been reading about activities that can worsen symptoms: “Activities that can aggravate POTS symptoms include working with your arms over your head, lifting heavy objects, and climbing stairs. Warm temperatures have an especially negative effect on the exercise tolerance of POTS patients as heat dilates blood vessels and diverts blood to the skin, thus reducing blood flow in key arteries that feed the brain. Air conditioning during hot weather is essential for most POTS patients.”
What else? What else? Ummmm…
They don’t know what exactly causes POTS. Some say it is from a viral infection, from some sort of neurotransmitter issue, or genetically passed from mother to daughter…. HA! Sorry Mommy, it’s still a possibility, so it must be included in the list.
Dr. Makati is very frustrated. He wants so badly to figure this out and I think he is more disappointed to not provide me with a clear cut treatment plan than I’ve ever been, having lived with it so long, lol.
ALSO, and I want everyone to read this next part quite a few times. I COPY AND PASTE!!! This idea is from 4 different websites (including research facilities)…
A UCLA medical study found that women tolerate stress better than men, thus the claim by some uninformed doctors that POTS is caused by "stress" rather than an underlying physical disease process is not based on the scientific evidence. If stress caused POTS, then men would develop POTS more often than women, the exact opposite of what accepted statistics indicates is the case. Men have a stronger adrenaline fight or flight reaction to stress than women and are less prone to work out problems with friends and family. Researchers found that women have higher levels of a hormone called oxytocin. "Animals and people with high levels of oxytocin are calmer, more relaxed, more social and less anxious. In several animal species, oxytocin leads to maternal behavior and to affiliation."
Well, I know this is a lot and slightly more detailed than is necessary. But, I never really know how much information people actually want versus how much I’ve told or how much there actually is to tell. I know many of you have already heard all of this, but it makes it easy for me to just include everyone at once, and that way I don’t forget to update someone of something. I promise to update more the moment I find out more. Feel free to forward this to anyone you have been talking to about me. I have no real privacy issues with this, it’s a normal part of my life and most people who have ever heard my name from someone I know know something about it, lol.
Also, the doctor has pretty much forbidden me to drive. He has also urged me to apply for SSI, since he feels that I am in no capable condition to actually work and this seems, to him, to be a disabling condition in the sense that it limits my mobility and activity quite a bit.
If you have any questions, please just respond.
I love you all and thank you all for the prayers and the support.
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