u/ObjectIll9474

Hi everyone! I saw Dr. Davis at Mayo Clinic a few years back for erythromelalgia and their testing revealed hyperPOTS. Which honestly made sense, but was unexpected.

I tried the typical compound cream treatment and lidocaine, but only ice packs and fans really helped the burning go away.

Fast forward to these last few months and the autonomic neuro agreed that I could try a few meds and see what helps for my hyperPOTS symptoms, mainly the severe total body hyperhidrosis. The med that worked for me was clonidine!

I take 0.1 transdermal patch replaced weekly. This has been truly life changing for me and I no longer have severe hyperhidrosis, erythromelalgia, freezing and swollen extremities and honestly more that is too much to mention.

The point of my post is really don’t give up and be open to trying recommendations! It took 16 years from my first symptoms (funny enough also noted at Mayo as it was my local clinic growing up) until I found this treatment.

Keep hope and keep on keeping on! 🫶

Hi everyone! I was given a tilt table last year at Mayo while evaluating skin conditions and they only had me go off of the Metoprolol 50mg a few days prior to the test and gave no further instructions. Granted the nurses never pulled in my medication list... regardless I did tell the techs the meds I was on. At the time I was on 150mg Wellbutrin, 150mg Pristiq and 80mg Strattera. This is pretty much my dream combo that erased my depression and anxiety. From what I can see on my Apple watch, my HR did not really increase much on any of these meds surprisingly enough. I went off the Strattera and there was no difference in vitals.

Long story short but long... the tilt showed positive for hyperadrenergic state or POTS per Shouman at Mayo Clinic but I do not know if he knew that I was still on my meds. I CANNOT get a ride there, nor afford a hotel stay for over a week to taper off and the withdrawal is too much, hence they had me stay on them (though again no notes in my MyChart). No one followed up with me on this tilt either until 1.5 years later where another appt let to the doctor questioning why no one did... I am guessing it is because my primary already gave me Metoprolol. My regular resting HR is around 85. Sleeping is also 85 or so. The tilt table was 101bpm supine (withdrawal effect from Metoprolol) and within the first minute it was 133bpm. It stayed between 133 and 134bpm 9 minutes until it jumped to 143bpm and they ended the test. Normal BP throughout. I have had symptoms for years like dizziness on standing and black spots in eyes, profuse sweating and heat intolerance (I could not finish their thermoregulatory test it spiked my HR to 170bpm..).

Has anyone else had a similar experience staying on such stimulating meds while taking the tilt? I personally don't feel utterly stimulated and was on these meds long before the symptoms just rapidly got worse and worse.