Propranolol, Midodrine, and Fludrocortisone for POTS

In the year since I have been diagnosed I have tried the three first-line POTS medications: Propranolol, Midodrine, and Fludrocortisone. For the most part, these have not worked well for me, but that doesn’t mean you will have the same experience. It’s always worth discussing all the different options with your doctor.

Propranolol

Propranolol was the first POTS medication I started after I was diagnosed. It is a beta blocker so it lowers the heart rate. In reducing the heart rate overall propranolol also reduces the dramatic elevation of heart rate upon standing in POTS patients. My dosage was 20mg in the morning and 10 mg in the late afternoon. I feel propranolol is a decent “bridge” drug. It may take the edge off symptoms as one works on becoming more active and conditioned. By the time I was diagnosed (over a year after the onset), I had become extremely deconditioned. In fact, I couldn’t fathom exercising more than 3 minutes at a time.

Propranolol gave me a very slight boost that helped me tolerate beginning an exercise regimen. After several months on propranolol, my local doctor thought I should see how I do off of it since propranolol can exacerbate fatigue and decrease blood pressure. I gradually weaned off propranolol and can confidently say that I do not notice any difference between being on it and being off it in a more conditioned state. It’s effects were limited to when I was deconditioned. I did not have any side effects from this drug, which is always a major pro.

Midodrine

In the spring of 2019 I was no longer taking any POTS medications. I wanted to try something new so I asked my local doctor about midodrine. Midodrine is a vasopressor. It works by constricting peripheral blood vessels so less blood pools in the lower extremities of POTS patients. I initially tried a dosage of 5mg 2-3 times per day. This drug did not work for me at all. Midodrine did not improve any of my symptoms; it just made me dizzier.

I was surprised that midodrine affected me that way, as it is certainly not common. I experienced the usual side effects of midodrine like goose bumps and a tingly scalp. Those side effects were not a big deal, though. If the drug would have worked for me I would have happily welcomed the tingly goose bumps. I retried midodrine at a half dosage which eliminated the extra dizziness. However, it was still ineffective at tackling any POTS symptoms.

Fludrocortisone

Fludrocortisone AKA Florinef is a synthetic hormone that causes the body to retain more salt and therefore retain more water. Through this water retention Florinef increases blood volume which can help with some of the orthostatic intolerance that POTS patients experience. WTFlorinef! This drug was terrible! After a few days on it my muscles became progressively weaker until they were completely gassed. In track we used to call this phenomenon “booty lock”.

I never thought I would get booty lock from walking across the room. I was on Florinef for less than two weeks. A couple days after I discontinued the drug, my muscles went back to feeling their POTS normal.

Has anyone else experienced this effect with Florinef? What experiences have you had on these first line POTS medications?

More information

To see what I am currently using instead of these medications visit the current treatments page.

To learn more about the various POTS medications check out this overview by Standing up to POTS or this one by PoTSUK.

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

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