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Going off meds

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Hi everyone,

I'm new here. I've had POTS for about 6 years now. I was diagnosed at Mayo AZ and put on the propranolol and midrodrine, salt routine. Over the past few years I've gotten mostly better. I cut out the midodrine a couple years ago which aways made me feel a little weird. 

Two months ago I tried to go off my beta blockers. I was off for about 2 months and felt some POTS symptoms but nothing too bad. Then one day at work I had some kind of adrenaline rush (doctor thinks it was a vasovagal response from using the restroom). My heart rate was near 200, was shaking all over, and had extremely tingly hands. It was pretty embarrassing cause it felt different than a normal POTS episode and I was scared so my coworkers called an ambulance. Since then I feel like I've been knocked back to how bad things were when I got diagnosed. 

My specialist (at Stanford) put me back on a new beta blocker which made me have bad side affects, back to propranolol and then after some discussion off of those and onto Florinef for the first time. About a week after taking the Florinef I had another adrenaline rush (doctor thought the Florinef would handle vasovagal responses which he think are responsible for the adrenaline surges). I lasted another week on the florinef with nothing but bad side affects and the doctor has said I can go off of meds for awhile and see what happens. 

I'm wondering if any of you have experienced similar episodes. My theory is that my body is adjusting to not having the beta blockers in my system and doesn't know how to handle adrenaline anymore. I'm hoping going off of meds helps my body level out a bit and then I can make better decisions about what meds I do or do not need (there was so much pill swapping I didn't know what was a side affect and what was the POTS). 

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Sounds like the attacks I get. What helped me was Doxepin. I take it at night to help me sleep, but it also is a histamine blocker that is 800 times stronger than Benadryl as well as a mast cell stabilizer and a drug that has alpha blocking properties (blocks those crazy adrenaline surges). Works great for HyperPOTS MCA


I was always starving on it and constipation was terrible. To combat rapid weight gain, constipation, and feeling hungry all the time, my doc switched to a low dose of Viibryd and a low dose 25 mg of Doxepin, and I feel MUCH better. Xanax for breakthrough attacks works wonderfully.  I hope that helps!


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