POTS Treatment Summary – Metoprolol and Propranalol (Part 3 of 3)

{This post is the third post in a mini-series discussing POTS treatment options and my experience. Find the first article here and the second article here}

I was on metoprolol tartrate for 3 weeks, metoprolol succinate for 1 week, and propranolol for one day. The experience overall was amazing, but also hard and heartbreaking. For one, the metoprolol tartrate worked. As a potsy (or person living with postural orthostatic tachycardia syndrome) it was revolutionary to begin living life with a normal heart rate again. Not only was the pounding heart resolved, but so was the lightheadedness upon standing up, the escalating feeling of anxiety when upright/standing, the dreadful fatigue, and for me, it also brought resolution to my frequent and bothersome heart palpitations (premature ventricular contractions). I truly was starting to live my life in a way that went beyond daily necessities and I was welcomed into a space of additional productivity. 

Things I was able to do while on metoprolol that I couldn’t do before:

  • Take my dog for walks
  • Cook an entire meal
  • Go grocery shopping 
  • Drive 
  • Go garage sailing 
  • Go to a Pilates class
  • Have a chocolate-making day
  • Stand up from sitting on the floor with NO SYMPTOMS!! 

Unfortunately, my body was never quite able to acclimate to the drug. Not only was I having frequent blood pressure dips into the 80s/40s (with resulting hypotensive symptoms), but I was also dealing with a 24-hour aching at the base of my neck that frequently resulted in migraines. Out of the 33 days, I experienced 12 migraine days complete with light/sound sensitivity, pain in my head and neck, nausea, and heightened POTS symptoms for the duration of the attack. As someone who had never experienced a migraine before, I realized just how brutal they are, and have enormous respect for those dealing with chronic migraine. It was as if I had made a trade – instead of bad POTS symptoms all the time, metoprolol took away my POTS some of the time but also gave me debilitating migraines. 

Though there had been significant hope that metoprolol would work for me long-term, my doctor and I pivoted to propranolol to see if we could lessen the adverse reactions. Unfortunately, it didn’t work as planned, and after one of the worst migraine attacks that night, I decided I didn’t have the resilience to press on and hope my body adjusted over the course of the next two weeks. 

Without having seen a specialist, I have come to the end of my treatment options. I am on the waitlist to be seen in Rochester at Mayo Clinic, which will likely be around November/December. I am also scheduled to see a POTS specialist at Froedtert in January 2024. In the meantime, my doctor agreed to refer me for physical therapy to see if that can be of benefit, and I am seeking out alternative options for sooner care. 

I am not a doctor, I only have my own experience. But if another posty asking for advice, based on my experience, I’m really torn whether my encouragement would be favorable or not.  Triggering chronic migraine or precipitating worse symptoms are not effects to be taken lightly. And yet I also know of other potsies who have gotten their lives back thanks to these medications, and I certainly got a glimpse of that. I hope my experience has been helpful as you weigh your own risks and gather information on this topic. 

1/21/24 UPDATE: the migraines significantly improved after beginning Midodrine, so there is a potential that the low blood pressure was causing the attacks. Additionally, I have now had ZERO migraines since having surgery to remove a tumor from around my facial nerve. I believe both variables played a role. 

  • I am so excited to report that after graduating from the 3-week Pain/Symptom Rehabilitation Center at Mayo Clinic in Rochester and continuing the program at home, I am nearly 100% recovered!...

  • The Valsalva maneuver is EASILY the most fascinating thing I’ve gotten to do in this entire medical adventure. On the surface, it’s a fairly quick and easy part of autonomic testing, but underneath, it’s one of the coolest and most complicated mechanisms of the human body that I’ve encountered. ...

  • With postural orthostatic tachycardia syndrome (or POTS), life is already a bit of a balancing act to keep all systems running smoothly, so as I prepared for surgery this fall, I was a bit nervous about how my body might handle it. The combination of drugs, the general physical trauma to the body, the emotional burden of being a bit nervous, and the recovery process were all things on my mind. Overall, the experience had its challenges, and there are some things I’d like to share with other potsies prepping to have surgery....

Kaley
kaleywied@gmail.com
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