But you are always tired!

I often catch myself saying "I'm so tired" over and over again on bad days. But "I'm tired" doesn't begin to describe it. Have you ever had the flu? You know the bone crushing fatigue that makes you miserable, that is what I feel most of the time. On days when things are looking up, I feel more like just after the flu, and days like today, I feel like full-blown so sick you can't stand it tired. My body feels like it is being crushed by a lead weight that holds me down. Each movement is difficult, and takes strength of will to complete. I don't know that I ever knew what normal energy levels felt like, but I know this is wrong. It is not as simple as "tired" it is more like soul sucking exhaustion. So when I complain about being tired, forgive me for whining, because it is either that or give up entirely and not get out of bed at all. Oh and don't make fun of the pajamas!

School Break

One of the great ironies of my life is that while I am busy in  a class I can't wait for a break. When that break finally comes, after ten weeks of hard work, I feel quite bereft. It makes no sense, but the routine of checking the discussion board, reading, doing homework, writing papers, and complaining about the whole mess, is missed when I am free of it! I felt the same way when I stopped working. How does someone miss the incessant alarms and chaos of critical care? Easy, stop doing it. Hope this reminds everyone that sometimes it is the hardest things in life that bring the greatest rewards. Or at least entertainment.

How high is too high?

Let's talk catecholamines. Epinephrine, dopamine, and norepinephrine are catecholamines that are made in the adrenal gland and regulate heart rate and blood pressure in the body. These chemicals are regulated in the body by the autonomic nervous system. Norepinephrine is the primary neurotransmitter of the sympathetic nervous system, also known as the "flight or fight" system. As medical professionals we all know the role of epinephrine and dopamine in the body, and have often given these as drugs to assist in a patient's hemodynamic stability. But most people are less familiar with norepinephrine. In critical care we may know it better as the drug Levophed. It causes systemic vasoconstriction and increases HR and BP. In patients with the hyperadrenergic form of postural orthostatic tachycardia syndrome (POTS), all catecholamines may be elevated, but more so the norepinephrine. It is the very high levels of norepi that are caused by inappropriate sympathetic response to any and all stimuli. This means that whereas the normal person may have a slight rise in HR when they are standing, or when they are cold, or hungry, the person with H-POTS gets a wildy inappropiate spike in HR, and often, BP. So how high is high? Well, the normal person has a norepi less than 400, even when stressed. The diagnostic criteria for H-POTS is a norepi of greater than 600 when upright. The last time mine was tested it was 984. It can go even higher for some patients, but when it gets over 2000 it is time to consider an adrenal tumor such as a pheocromocytoma. So there is the answer...

Nashville and Vanderbilt

Last week was quite the adventure. Having waited now for months to be notified of an appointment date at the Autonomic Dysfunction Clinic at Vanderbilt, imagine my shock when they called me the Friday before last to remind me of my upcoming appointment! Oh yes, I had an appointment at the much vaunted Vanderbilt on the following THURSDAY. So not only did I have to stop my cardiac medications (and clonidine how I missed you) but I also had to stop my IV fluids, all while trying to find a way to get to Nashville from Louisville. Needless to say, I was a little stressed, and without a way to limit the sympathetic outflow, I was a wreck. The upside was I had gobs of energy, the down side was my HR and BP were through the roof. I didn't sleep for days. But, my good friend Robin agreed to take me to my appointment, and girl vacation was on! Two crazy ladies and a dog hit the road and made it to Nashville with only a little misdirection and much much laughter.

The next day was the every entertaining Autonomic Functions Testing (AFT). For people with dysautonomia it is a form of torture. They test the vagal tone by assessing the reaction to extended Valsalva manuevers, and it almost always guarantees a solid black out. They assess for changes in heart rate and BP with deep breathing, in teens this might be called pulsus paridoxus, but it is not normal in adults. They cap it off with a set of orthostatic vital signs. The good news is that they have stopped doing the cold pressor test (in which they submerged the hand in ice water for one minute). My HR at rest was 116, and standing was around 145. Not too bad. BP flat was 136/84 and standing was 134/104, then bottomed out and was unattainable. No big shock there.

So the end result is that I still have POTS, I still have an excessive adrenergic response, and I really need my IV fluids every day. Talked about some medication changes to stop the wanton high BP, and about the need to avoid any stress. I sort of laughed, because as a graduate student, I am not sure how they expect that to happen! Every one LOVED the dog. Miss Lyla was a big hit with the staff at Vanderbilt! I need to get her a patch that says "no petting, and yes that means you". :)

Overall it was a worthy venture into the land of specialty care. Robin and I had a lot of fun and Lyla was a great addition to the mix. It just makes me grateful to be close enough to get this kind of care, and to have great friends who will get me there!