Said no doctor, ever – until today.
I have this insane combo of orthostatic hypotension that operates independently, although occasionally at the same damn time as postural orthostatic tachycardia (POTS). The hypotension is thanks to my vacationing adrenals that fail to keep my sodium levels where they should be. Orthostatic tachycardia can be a compensatory mechanism in dehyration and other reasons for low blood pressure (adrenal insufficiency and yes, sometimes dehydration or severe anemia, in my case).
To make things super confusing to the point that I don’t even fucking understand it, my POTS is its own beast. I was tested for OH/OI almost five years ago after a syncopal episode (passing out) and was diagnosed with POTS. Of course, I wasn’t aware of this diagnosis until a year ago. THEN I was diagnosed with OI.
POTS is a giant stinky turd. I’ve tried all manner of drugs to treat the symptoms. First line of defense is beta blockers, that in higher doses, treat HYPERTENSION. POTS is not a fainting disorder. If orthostatic hypotension is present during tachycardia, it’s not POTS, it’s OI. Or it’s both caused by different mechanisms. Most people with POTS have normal or even high BP while standing.
So, uh, why was I diagnosed with both? Because once the OI was sufficiently treated with steroids and more steroids (hydrocortisone and florinef), my exaggerated response to sitting or standing continued and I didn’t have OH/OI when I was diagnosed with POTS.
It still doesn’t make any sense.
It looks like this: early in the morning, the web building spiders exit my brain for the day, my heart rate is 58-65. It’s a very reasonable resting heart rate. When I get up to visit my best friend, señor toilet, I have to hold onto things as I make my way to him, because my heart rate is now about 170bpm +/-15bpm. That’s from standing up and walking less than ten feet. My target heart rate for cardio exercise is 148-154bpm. It’s like when I got up in the morning to go for a run, only now the only thing running is my butthole. Rather, it was until someone decided it would be best for me to crap in a bag adhered to my abdomen instead. Details don’t matter so much here.
So, every moment of every day when I’m not laying down, it’s like I’m sprinting. My legs get heavy and numb, my hearing fades, my stomach does somersaults, my vision is flecked with stars, and if I’m standing long enough, the daylong headache sets in – it feels pretty terrible. But I don’t pass out. Passing out is caused by something else.
When I was put on beta blockers to slow down my heart rate, it got worse because of my coexisting swooning disorder (spending too much time on Jason Momoa’s Instagram, are we?).
And theeeen, oh this one really puts the fucking cherry on top, I was diagnosed with some stupid form of heart failure because I have 5,000 things going on at any given time that are trying to kill me. It’s lovely. I have this actual structural heart disease along with all of my weird cardiovascular shit that is untreatable because of those. Fantastic! Putting me on alpha and beta blockers finds me in circulatory shock (yeah, that happened a couple of times), which meant that I had to take something that’s like TNT for the heart that increases cardiac output without being a vasodilator. That’s all well and good, because I honestly felt much better while on it, but it also increased my heart rate and the frequency of nasty arrhythmias I was experiencing.
Then they said, “Okay, how about you don’t do anything at all – don’t even MOVE – so you don’t die.”
Cardiologist #6 says, “let’s try a potentially dangerous drug combo that might be the solution you’re looking for – or shit, it might kill you. Only one way to find out.”
Doctor dialogue is often doctored and translated into Kara-speak, thanks to my creative license, unless otherwise specified.
Now it’s metoprolol to slow down my heart and midodrine to raise my blood pressure. Metoprolol is a beta adrenergic antagonist and midodrine is an alpha-1 adrenergic agonist. In my head, these two cancel each other out and do nothing. Of course, alpha and beta adrenergic receptors have different functions, so maybe not. Drugs are complicated. Complicated poisons.
This brings me to my point – I question any doctor who tells me a pharmaceutical chemical is completely without side effects. The Google pharmacopoedia is at my fingertips and I’d be a terrible self-advocate if I decided to skip researching the poisons that have been prescribed to me.
Side effects of midodrine:
The most common adverse reactions were paresthesia (includes hyperesthesia and scalp paresthesia), piloerection, dysuria (includes dysuria, increased urinary frequency, impaired urination, urinary retention, and urinary urgency), pruritus (includes scalp pruritus), and supine hypertension.
Common (1% to 10%): Supine hypertension, flushing
Uncommon (0.1% to 1%): Reflex bradycardia
Rare (less than 0.1%): Tachycardia, palpitations
Frequency not reported: Vasodilation/flushing face
Very common (10% or more): Paresthesia (18.3%)
Common (1% to 10%): Headache
Frequency not reported: Feeling of pressure/fullness in the head, dizziness, somnolence
Very common (10% or more): Piloerection (13.4%), pruritus (12.2%)
Common (1% to 10%): Rash
Frequency not reported: Skin hyperesthesia, erythema multiforme, dry skin
Very common (10% or more): Dysuria (13.4%)
Frequency not reported: Impaired urination
Common (1% to 10%): Nausea, dyspepsia, stomatitis
Frequency not reported: Dry mouth, canker sore, pyrosis, gastrointestinal distress, flatulence, abdominal pain, vomiting, diarrhea
Common (1% to 10%): Chills, pain
Frequency not reported: Asthenia
Uncommon (0.1% to 1%): Sleep disorders, insomnia, restlessness, excitability, irritability
Frequency not reported: Confusion/thinking abnormality, nervousness/anxiety
Rare (less than 0.1%): Abnormal hepatic function, raised liver enzymes
Frequency not reported: Backache, leg cramps
Frequency not reported: Visual field defect
Well then. I guess she figured since 99% of these are side effects of me being alive, they weren’t worth mentioning. Piloerection is a fun word.