Dysautonomia Week – Thursday


7:00 am: – I wake up to the gentle beeping of my alarm and slowly, lazily crawl over to slap it off for another hour. It’s THURSDAY!! I don’t have any scheduled classes on Thursday, nothing to teach, and no scheduled jobs. This is different from not having work to do, some of it paid – but I can do it in another 3 hours, and it will be ok. I love Thursdays. I go back to sleep.

7:55 am: I get a call from the service department, letting me know about how long it will take for me to get my car fixed. It’s going to be cutting in close to my 2pm doctor’s appointment, but I don’t cancel. I’m still trying to wake up, to be honest.

9:00 am: I realize that I should have canceled, especially when I’m coughing so badly I can hardly breathe. I also have intercostal neuralgia and ribs that don’t stay in place very well, a side effect of a pretty intense ablation procedure and joint hypermobility/ HEDS syndrome. This means that coughing is really very … uncomfortable. Screw it. I call and cancel.

9:30 am: One of the cardiology offices got back to me! It’s a nurse covering for someone else at my new cardiology office, and they don’t have all the information they need. The nurse has never worked with patients like me on ivabradine before, so she gets the information and says they’ll get back to me. To be fair, ivabradine was initially approved for heart failure, though it’s proven very useful for treating other conditions like dysautonomia and IST. If it’s ivabradine causing the light trailing, I’ve got a dilemma. It’s been helping me a lot. This means right now I’m trying to figure out which one I need more – being able to see, or being able to stand?

1:45 pm: I didn’t get much work done this morning, unless you count blowing my nose as “work.” Another cardiology office returned my call. This nurse knew a little bit more about the drug, but she hadn’t heard of anyone having quite this reaction. She’d double check with the doctor once he was free, but it could be awhile. They were short-staffed, and at a trauma one research hospital there’s always more than enough to go around, even without people being out sick or on vacation. She was happy to hear I was following up with primary care. I walked up to the shuttle stop and sat on the sidewalk. The benches normally have a lot of trash around them and smell funny, and the grass is worse. The stop is right outside some of the mental health offices, and I can’t decide whether this is good or not. Does it mean a young woman with an Ikea backpack and a college shirt looks normal sitting cross-legged on the sidewalk, because “normal” is actually “just a little bit different than social standards”… or does it mean I just look slightly off with a reason for my being there? Actually, it doesn’t matter one whit. When my shuttle pulls up, I think the driver recognizes me, and she’s grinning. So was the little boy dancing as he waited for the city bus with his mother, and the guy who went and tentatively sat on one of the benches was smiling broadly at me too. I bet he wished he’d sat on the sidewalk. 🙂 It’s a nice ride in, and for once, I’m not going to be really late. And finally, on Thursday, I’ve managed to get my act together enough to ride the blasted shuttle in like I’m supposed to.

4:00 pm: I’m greeted with grins and a chorus of “hellos” at the student health center. (I’m strongly reminded now of one episode of “Speechless,” in which the dad realizes he has cred at the hospital in town.) The head nurse sticks her head around the door and barks out my name. I apologize as she takes my vitals for being sick, and she points out that wasn’t even what I came in for, though, was it? Headache? I feel a grimace stretch my face and I explain. She snorts. “Too many meds!” is her brief assessment, and I feel that she’s right. I also know that right now, those same medications are keeping me off the floor and thinking semi-coherently. Sort of.

It can take a very long time to find the right combination of medications at the right doses for dysautonomic conditions. This is not an uncommon experience. That I was diagnosed in less than 5 years and am having some luck finding doctors and medications is what is uncommon about this whole process.

When you consider that I also have some bizarre allergy issue that makes my body randomly declare jihad on foods or substances that were prevously a-ok, medications can get extremely complicated. I wear a MyID now, a sporty little rubber bracelet like those sold for various causes or given out at summer camps. It will let first responders know that me being on the floor is probably not a disaster, what medications I’m on, and which doctors they can now start to annoy with my blessing.

POTSie style: accupressure anti-nausea bracelet, medical ID band, and pink compression socks with butterflies (usually covered by slacks 🙂 )

The doctor is a wonderful but exhausted woman. She doesn’t have any prior knowledge of ivabradine, but knows some things to check for in the pharmacology. For a while it looks like migraines might be the winner. Then we find a few bizarre little phrases and trace them back through a research article or two. We gradually manage to stretch out the little side effect warning in the drug information pamphlet into something that resembles actionable intel. When I point out that as a heart failure medication it probably wasn’t tested in people like me – under the age of 50, not going through heart failure, normal ejection fraction, etc. – well, perhaps the 16% of patients who experience visual sparking means that in a different demographic the light phenomenon will be a little different. Maybe it will equal me, with ghostly arms following me around. There’s also a chance it will go away in about 2 months. Maybe. Maybe we can reduce the dose and titrate up without me losing a lot of ground, too. In the meantime, I have to wait until one of the cardiologists gets back to me and probably avoid driving at night. Possibly period. She also checks me out when she notices how bad my cold is and gives me a doctor’s note to get out of class tomorrow. She is well aware that I don’t have class in the normal sense of the word and that she is giving me an excuse to refuse to lecture tomorrow morning if called upon to do so, as well as anything else that comes up. By the end of our appointment, I was so hoarse I sounded like a frog that had been microwaved. I take the note. It doesn’t mean I have to use it.

I say goodbye to the gruff nurse, who is actually a fierce dear who literally saved my life once and hugged me joyfully when came in to say thank you a week later. Like you can ever just say thank you for something like that…. I wave to the desk staff and walk out with someone from student insurance, and we talk about that and about a new restaurant. The frog in my voice has now been battered, deep-fried and then toasted to perfection on some spent fuel rods.

12:45 am: I took some tests outside to grade along with two whole packs of Kleenex, but of course I didn’t get many done. I had a wonderful conversation with the med student who parks in front of my garage and pawned a bunch of slightly old Chinese food on him… I’d bought takeout over the weekend, and it turned out that I can’t eat that stuff anymore without really reacting. He’ll probably just toss it, because he’s smart, but it will save me the pain of doing it. I fix myself comfort food for dinner instead- tater tots and fish sticks. I found that the Organics potato puffs brand, while not as flavorful as others, technically doesn’t have anything in it I know I’m sensitive to, and Trader Joe’s has acceptable fish sticks. I can use the “Just Mayo” brand and some dill to make tartar sauce, as long as I don’t eat much of it. Carrot sticks and some almond-milk ice cream with frozen cherries, and I’ve had a return to the 5th grade. It’s lovely. I’ve talked to both my mom and my sister today. By the end of the evening, my voice sounds like a bulldozer trying to crank up in a gravel pit. I think it already squashed the frog flat.

I turn on the baseball game and listen to the Dodgers beat the Cubs to go to the World Series!! … while grading and sorting through paperwork and emails. I even hurriedly remember to phone in a bill payment. I check the online boards and find, in response to my hurried question earlier, that YES, Virginia, weird visual stuff does happen with ivabradine! And no, it might not be permanent! And I wouldn’t be the only one to decide that it’s worth it to go on taking it and sacrifice some night vision for a chance to live a little bit more of my life vertically.

I beg off taking roll and notes during the professor’s lecture tomorrow. The opera students will thank me for not giving them this cold before their next show starts this weekend. An “emergency” staff meeting has been called to talk about some assessment grading… I’m uncertain how it can suddenly be an emergency when we’ve had the these assessments (and had them mostly graded) for two weeks, but ok. Over the last few years, health crises of one type or another have redefined my already skewed sense of the word “emergency.” I spend a lot of my time in hospitals watching people very bravely, visibly, quietly not freak over things that are very freaky. In contrast, outside of hospitals I sometimes get to see people very dramatically, visibly, and loudly freak, usually over things that are surprisingly non-life threatening. Maybe it’s because it’s okay to freak about things that aren’t really important. Even though I should try to prep for that meeting, I’m more than spent and the thought of talking tomorrow has the same appeal as actually eating gravel.


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