bethanyh Posted May 25, 2015 Report Share Posted May 25, 2015 In January 2015, I was diagnosed with POTS/dysautonomia and started on 2.5mg of Midodrine three times a day. I currently take 5mg Midodrine three times per day. I wear waist high compression nylons as well. However, I am not feeling a reduction in symptoms (dizziness, brain fog, feeling faint but not actually passing out, lightheaded). When I complete my daily BP checks, my BP is still in the 90's over high 50's-low 60's on a regular basis. I layer my food with kosher table salt, eat salty snacks, drink electrolyte drinks, coconut water, and plain water. I use kosher salt because the granules are larger; is there a type of salt that is better? I have been on two trials of Florinef but failed both of them. My doctors seem to be opposed to increasing the Midodrine even though it can be prescribed up to 10mg. Any suggestions on what to do to increase my BP or try to reduce my symptoms?Also, my cardiologist wants to start me on a beta-blocker, specifically Pindolol. I have looked on several different medication interaction websites and some list the two drugs as never to be taken together, others there is absolutely no interaction listed. Does anyone have experience specifically with Pindolol and Midodrine? I am also hesitant with a beta-blocker because my BP is so low and beta-blockers tend to lower BP.I appreciate any tips or advice! Quote Link to comment Share on other sites More sharing options...
Arez2row Posted May 26, 2015 Report Share Posted May 26, 2015 Hi! Just over a year ago I was diagnosed with POTS (and later other conditions that caused this). Originally, I managed my symptoms pretty well with compression stockings, a high salt diet, and propranolol (which is a beta blocker). This stopped being effective for me after a while, so I switched to 0.1mg of Florinif once a day and 2.5mg of midodrine three times a day. Recently, with an increase and activity and warmer weather I was really symptomatic (dizziness, blacking out, etc.) so we increased the meds. I now still take the Florinif, and take 5mg of midodrine four times a day. I'm trying this for a bit and will either increase the dosage or switch to something else. About the beta blocker- I stopped mine for the reason you said- my BP was going way too low and making things worse. It helped at first with the tachycardia, but the other side effects weren't worth it. But everyone is different!! Maybe talk to your doctor about increasing the frequency of the midodrine? I went to 4x and so far it is helping! When I feel myself "flaring" with POTS symptoms I try to get extra rest, drink TONS, and exercise lightly if I can (walking, slow biking, etc.) to make sure my legs don't get too weak and to keep the blood moving. It doesn't take away the symptoms, obviously, but I feel a bit better doing so. I hope you feel better ASAP. I know how frustrating everything can be- if you have any questions or ever want to talk I'm around! Quote Link to comment Share on other sites More sharing options...
bethanyh Posted May 26, 2015 Author Report Share Posted May 26, 2015 Ares22: Thank you, I appreciate your advice! Despite my enormous hesitation, I think I might have to give the beta-blocker a try and just see what happens to my BP, especially since I tried Florinef twice and did not tolerate it well. My cardiologist is very opposed to Midodrine and does not even want me on it so increasing to 4x a day probably will not go over well. I have moments of tachycardia throughout the day but my HR ranges are usually in the 120-140's, which is not as bad as some others that I have heard about who get into the 180's or more. I am just very concerned about the BP aspect. Thank you again! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 27, 2015 Report Share Posted May 27, 2015 Hi Bethany! Hoping your having a good day today! Did you get the results back from your HR monitor? Hopefully the pindolol will help the tachycardia, its a terrible feeling to be up the 140's! Beta Blocker's serve more than one purpose in my situation. It controls HR more than BP for me. When are you starting it? I'll keep my fingers crossed for you that it helps! Quote Link to comment Share on other sites More sharing options...
bethanyh Posted May 28, 2015 Author Report Share Posted May 28, 2015 Hi Sarah! Thanks for checking in!I sent my heart monitor back to the company May 15, they just called my Tuesday (May 26) to tell me they never received it. Then about 20 minutes later called again and said, "We found it" I thought, ARE YOU KIDDING ME?! I told them my cardiology appointment was Thursday so they were going to try and expedite the results. However, when I saw my cardiologist this afternoon he did not have the report yet. He still stuck with the suggestion of Pindolol (starting with a .25mg once a day, the normal starting dose is .5mg 2x daily). He is supposed to be in contact with the company tomorrow in order to get the report. I am waiting to start the medicine until he has the results and can verify there is not a separate issue beyond the PVC's.Thanks again, my fingers are crossed too!! Quote Link to comment Share on other sites More sharing options...
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