#i'd like to think that regardless of what happens with hg at the end

[ianthedebonair]

Old(er) man Damien, maybe? (assuming he doesn't get anymore banged up or telepathically go nuclear at the end 🤷‍♂️)

[salt-baby]

#please tell me anything you may know about propranalol bc i've been on it for a year for tachycardia #that they can't find the reason for - and recently it's either getting worse or the dosage isn't strong enough anymore #they want to put me on metoprolol but the side effects listed are ... not appealing #and the fact you can't just stop taking it scares me but also i'd like to lay down to sleep #and not feel like my heart is gonna vibrate out of my chest #it's even more disconcernting when i check my bpm and it's in 70s but i still feel like i just got off a rollercoaster inside #they checked my heart and it looks and is functioning fine and don't seem to know what else to do # my bp is very slightly high so they latched onto that and like ok but they haven't even looked at #like adrenal gland issues even though my thyroid is also acting up #it's currently fine while i'm walking and moving around but trying to lay down i 'feel' my blood pounding in my ears #it's terrible trying to concentrate but i also can't sleep i am so tired also my legs keep cramping #idt it's pots though bc up til now the increased heartrate was if i was standing up and moving #thenit was under control for months #then suddenly the thyroid stuff kicked up and the tachycardia too just in the last month or so #they keep saying the propranolol was also 'off-label' for anxiety which they seem to be trying to say i have #but like yeah having a heartrate that untreated shoots up to over a hundred when sitting down doing nothing #does cause some level of anxiety you know?

I’m glad you asked! your tags prompted a bunch of research (which i had an absolute blast doing)

I feel very strongly about the usage of propranolol in pots because I think its extremely frequent prescription is reflective of a misunderstanding of how POTS works. to walk you through this:

I recently attended a talk given by a neurologist on forms of dysautonomia in children - POTS was a central focus. The presenter showed head-up table tilt data like this (which is from Cheshire et al.):

[image ID: a line graph from a scientific paper. the graph is of head up tilt testing data, specifically SBP, DBP, and HR. the graph is labeled “Postural Tachycardia Syndrome”, and the axis of the graph each have a short line labelled “50 mm Hg or beats/min) for the vertical axis, and “1 min” for the horizontal axis, to indicate scale. Below the lines of the line graph, testing periods are labelled “Supine”, “Head-up tilt to 70 degrees” and “Supine”, from left to right. All lines are variable, fluctuating up and down a few mmHg or BPM. the SBP line remains mostly level, the DBP line increases around 10 mmHg during the “Head-up tilt to 70 degrees” portion of the graph, and the HR line increases over 50 BPM during the “Head-up tilt to 70 degrees” portion of the graph. DBP quickly returns to normal in the second “Supine” section of the graph, with HR slowly returning to normal over the course of around 2 minutes. End ID ./. ]

The presenter went on to say that this proved that people with POTS don’t have any drop in blood pressure when they stand up, just a sudden increase in heart rate. which, isn’t how pots is understood to work.

in general, when you stand up, gravity is suddenly acting on your body (and the blood inside it) in a different way - suddenly, its a lot harder to get your blood up to your head (and to your arm or fingers, where blood pressure is measured). in healthy people, the blood vessels in the lower half of your body constrict automatically, and push blood back up to the heart. In people with pots, this is impaired, and blood starts to pool in the legs. 

As a result, sensors near the heart called baroreceptors (among others) realize that the blood pressure coming from the heart is low, and speed up the heart rate to compensate. This compensation happens almost instantaneously, hence why there’s no sign of it on the tilt table data, but regardless the blood pressure did still drop out. All the tilt table data tells us is that the rest of the body, those baroreceptors and other blood pressure mechanisms, that’s all working fine. In some people with POTS, there’s even a little dip in blood pressure before the HR shoots up. 

Eventually, though, if the drop in blood pressure is severe enough, the heart just can’t keep up, and the lack of blood to the brain makes you faint (syncope). People with POTS don’t have symptoms of just high heart rate, they have symptoms of low blood pressure as well. But some doctors think that because they can’t measure the drop in blood pressure, it doesn’t exist, and heart rate shoots up for no clear reason.

propranolol is a type of medication called a beta-blocker, which means it acts on certain kinds of receptors called beta receptors (and on certain types of those receptors, but I’m not getting into that here). in effect, it lowers heart rate, and can lower blood pressure as a result. It’s a very familiar medication to any cardiologist, and generally regarded as safe and mild.

But in people with POTS, that heart rate rise didn’t pop up out of nowhere - it’s really important to keeping you conscious! so decreasing the heart rate without thinking about the blood pressure isn’t really a great idea.

That said, there’s evidence its effective in people with POTS, from a variety of different studies, and its one of the first meds usually prescribed for POTS. However, in recent years, I’ve started to see some others arguing against it as well. 

for more on your specific symptoms:

What you described rang a bit of a bell for me. supine (laying down) and resting tachycardia aren’t really associated with the kind of POTS I know, although not completely unheard of. that said, you said you weren’t sure if your heart rate really was increased while lying down, but you were pretty sure you felt it (and I trust you - something is going on, even if you can’t catch it with a sensor). and you described yourself as slightly hypertensive - if its under 130/90 ish at most of your appointments, I wouldn’t worry. nurses don’t always have the best technique in taking blood pressure, and can often measure falsely high readings. over 140/100, and they’re probably on to something with the hypertension thing.

Anyway, those symptoms (hypertension and supine tachycardia) remind me of a subtype of POTS (a less common one) called hyperadrenergic pots. It’s proven pretty difficult to find stuff on this subtype, but I was able to find a couple papers. From Conner et al.:

“This form is characterized by a gradual onset with slowly progressive symptoms. Patients report experiencing tremor, anxiety, and cold clammy extremities with upright posture. Many patients note increased urine output when upright. True migraine headaches may be seen in over half of patients. Gastrointestinal symptoms in the form of recurrent diarrhea were seen in 30% of the patients.”

One paper mentioned those with a hyperadrenergic form of POTS had supine tachycardia that gets worse when upright (Ross et al., second paragraph of the introduction).

You’re on the right track with the adrenal gland stuff - to confirm this, there should be about a 10 mmHg increase in systolic blood pressure upon standing, and there should be elevated catecholamine levels (which has to do with adrenal hormones). Your doctors will have to rule out something called a pheochromocytoma, which is a benign (NOT CANCER) tumor on the kidney that can cause similar symptoms. (and if it is a pheochromocytoma, which they’d figure out using a scan like an MRI or CT, then they’d want to remove it surgically).

Your doctors likely didn’t test your catecholamine levels because its a pretty finicky test, and can be time intensive for both patient and administer. additionally, as a wild guess, this doesn’t seem like the kind of test insurance likes to cover.

So lets suppose you do have the hyperadrenergic form of POTS - what medication options are available to you? According to Conner et al., a couple! They list bupropion (wellbutrin), escitalopram (lexapro), clonidine, and labetalol (a different kind of beta blocker). Clonidine was recommended by other papers as well. Worth mentioning is that I did come across a study that suggested midodrine WON’T work for the hyperadrenergic subtype (Ross et al.), which Conner et al. agrees with.

And if you have the more common form of POTS (neuropathic), then it may be helpful to try fludrocortisone (or florinef). Some studies also suggest increasing blood volume (ie, drinking a lot of water and eating a lot of salt), which is what florinef does, can be helpful in the hyperadrenergic form, so florinef might be worth trying either way.

anyway, i hope all of this was helpful. you’re welcome to reply back with questions or comments, or send them to my ask box. i’m glad you liked my post, and hopefully my response wasn’t too overwhelming! I wish you the best of luck with your symptoms.

POTS Medication Vocabulary

after about the third time a doctor prescribed a medication that made my POTS drastically worse, and about three doctors visits past giving up on being an easy patient, i started asking my doctors the following questions whenever they prescribed a new long term medication:

is this medication a hypotensive? (will this medication lower my blood pressure?)

does this medication have a risk of tachycardia? (can this medication raise my heart rate?)

is this medication a diuretic? (will this medication dehydrate me?)

can this medication cause hyponatremia? (will this medication cause my body to lose salt?)

your doctor likely doesn’t know all of this off the top of their head for every medication, but they should know the most common adverse reactions. some may simply tell you they have no clue. i still think it’s worth asking to force them to consider these mechanisms.

for additional consideration:

Keep reading