p8d Posted November 10, 2016 Report Share Posted November 10, 2016 Hi Everyone, I have been really struggling recently. Everything is flaring and I welcome any ideas as to what is going on and how to treat it. I had been having increasing tachycardia on standing but it wasn't too bad (90s_100s). I started extremely low dose metoprolol which after about a week caused crazy fatigue but kept the heart rate very good. I switched after about a month to nadolol but the fatigue kept up so I weaned myself off. I *think* the beta blockers also induced a lupus flare as my hands and feet got extremely painful. They haven't bothered me since June. My rheumatologist doesn't think the beta blockers are responsible but put me on prednisone for 20 days which is helping both the fatigue and pain. I have been off the beta blockers for 8 days but my heart rate is 70s lying down or in the recliner, upper 80s sitting and 100-120 or higher standing. Everything else goes nuts too, temp regulation, flushing, GERD, tingling tongue, etc. What is weird is my bp is good for me (130s/80s) but as the day wears on my hr just goes higher and higher regardless of bp. I'm also on fludricortisone and low dose clonidine as needed. Any insight into what is going on is welcome. I really don't get the hr going up as the day wears on and why most new meds are fine for about a week then I get crazy side effects. Thanks. Quote Link to comment Share on other sites More sharing options...
Roxy Posted November 10, 2016 Report Share Posted November 10, 2016 I have a lot of the same issues and my doctors are still trying to figure out what is going on. Will let you know if I find out anything new. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted November 11, 2016 Report Share Posted November 11, 2016 Do you have mast cell issues? Think I heard that people with mast cell activation disorder shouldn't/can't take beta blockers. Just a thought. Some of your symptoms sound like a mast cell flare. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 11, 2016 Report Share Posted November 11, 2016 DizzyGirls is correct. Beta blockers are contraindicated for mcas patients but it is usually due to it causing breathing/asthma type issues. I have flares I'm my POTS when I have flares in my inflammation (for which we don't know the cause.) Usually, getting the inflammation under control helps bring my POTS down to a more liveable state. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 11, 2016 Report Share Posted November 11, 2016 Hi, P8d. Glad to hear from you - sorry not under better circumstances though! My POTS doctor said he's got a lot of POTS patients flairing during the change of seasons. Sorry that your feeling so poorly. Hang in there! Sarah Quote Link to comment Share on other sites More sharing options...
p8d Posted November 11, 2016 Author Report Share Posted November 11, 2016 Thanks everyone. Katybug, I said to my PT 2 weeks ago I felt like I had crazy inflammation so I am sure you are correct there. I'm beginning to think mast cell issue too but no one in my area diagnoses/treats it. My neuro ordered a 24 hour urine test but it came back negative. I started myself on famotidine and loratidine and will ask the PCP about a stabilizer. He's very receptive. Foxy, please keep me posted. Thanks again. Quote Link to comment Share on other sites More sharing options...
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