I had another bad night; three and a half hours of sleep to follow up on the five I got the night before. Last week, I felt really good and was even sleeping much better, and this week it’s like every single thing is flaring up – I’m not sure why, except that maybe ‘what goes up must come down’ or more likely, I overdid things again because I felt good. Whatever the reason, I felt terrible this morning: aching (and slipping) joints, GI issues, headache, neck pain, super-loud tinnitus and extra-snowy visual snow, and my POTS decided to say “screw you, your beta blocker, and the compression stockings you rode in on, I am going to party today.”
I had a recheck appointment with my cardiologist this morning, so I decided to wear my Polar chest strap while I got ready for work, to show him what was going on. The featured image of this post is the readout from about forty minutes of me standing in my kitchen making my lunch, pouring coffee, and doing dishes, with those dips where the heart rate drops completely off the chart being the times I had to sit down because I was too woozy. This isn’t even really that impressive, as far as heart rates go (one day when I forgot the beta blocker, it spiked up as high as 187 bpm!) but going from 65 to 126 just by standing up was enough of a sudden jump to make me feel pretty craptastic.
The cardiologist offered to try increasing the beta blocker when I showed him the graph, but the 25 mg. of metaprolol already makes me tired and sluggish so I’d rather not increase it unless there was a really good reason – and as I tried to explain to him, prior to the past few days, I was doing pretty decent. Positional changes (like repeatedly crouching and standing) still make me feel faint, but overall there has been enough improvement that I’m happy to let things ride as they are until I’ve exhausted other avenues.
I have three back-to-back MRIs scheduled in three weeks, (brain, cervical spine, and lumbar spine – standing/positional on the first two, I think) followed by a consult with the neurosurgeon who interprets the scans, and an appointment with an allergist who specializes in mast cell activation disorders pending after that. Any of those diagnostics (or a combination of them) might be the key to my dysautonomia, so I don’t think I should change anything right now – except to maybe stop acting like a wild animal that was suddenly freed from a cage every time I have one or two good days.
Featured Image: Screenshot from the Polar Beat software that captures the heart rate info from the Polar H10 chest strap I have, measured when I was standing in the kitchen trying to make my lunch and pour coffee.