Kaitlyn Posted May 5, 2016 Report Share Posted May 5, 2016 Hi I am new to the forum so am posting to say hello and I look forward to getting to know you and to sharing mutual experiences and support. I also have a question. Of course with POTS and OH we are all familiar with tach-y and the symptoms that go with it as well as BP drops when standing too long ... My question is does anyone else have postural hypotension when sitting and laying down? This has been going on for months and has been resistant to beta blocker change, added salt tablets (homemade 1 gram capsules 3x/day), and an abdominal binder. The binder has given my BP a small bump when lying flat but it's still not where they want it to be. I have a great team of Drs that I have confidence in (took a long while to get here but I am so grateful!). The next thing they want to add is Florinef which I am feeling very resistant to. I know it is a natural type of steroid ... but I find myself procrastinating starting it ... I don't know what it is. I have followed all advice and cooperated fully with everything else but for some reason I feel myself digging in my heals on this one. I just don't want to take it. I am so tired of all the meds and the side effects and it appears Florinef can have some bad ones. And yet, having BP so low that my organs are potentially not getting enough blood is not an option either. I appreciate any feedback ? Kaitlyn Quote Link to comment Share on other sites More sharing options...
DADofPotsSon Posted May 5, 2016 Report Share Posted May 5, 2016 My son had that problem during his late teens and early twenty's and florinef is what helped! He is 29 now and still takes florinef. During his late teens the doctors tried the proamatine drug on him supine to see if it helped but unfortunately we had to wake him every 4 hours to take it. It did work, but the florinef did the trick! DADofPotsSon Quote Link to comment Share on other sites More sharing options...
yogini Posted May 5, 2016 Report Share Posted May 5, 2016 What is your blood pressure when lying down? It is common for BP to drop very low while lying down/sleeping. Beta blockers tend lower your BP - so if you already have low BP they may not be the best med for you - or you may need something to supplement your BP as your dr suggests. Change is scary, but on the other hand there is always a chance that change will make things better than they are. I was on betas for many years - they made me functional. I was scared to change - but when I switched to Paxil and got off betas I actually felt a lot better and could be more active. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted May 5, 2016 Author Report Share Posted May 5, 2016 Dadofpotsson - thanks for the info. It is validating to know I am not the only one. Drs are going to check sodium, potassium, and cortisol and then I guess I will give the Florinef a try. Half tab to start with and we will see how it goes. Happy to hear it has helped your son! Yogini - it has been as low as 60s/30s which does not make for good MAPs (mean arterial pressure - the measurement which lets them know if your getting enough blood to organs). I am coming out of an exacerbation and that combined with added salt capsules and the abdominal binder has brought it up to 80/40s. Much better but they want it higher. My neuro said she would like my systolic supine to be 120 ... I don't see that happening lol. I have always ran low anyway. Have always been athletic and ran 90/60. Wasn't a problem until a few years ago. Did the Paxil manage the tachycardia? Thanks again for both of your responses! It's so nice to finally connect on dinet ? Quote Link to comment Share on other sites More sharing options...
yogini Posted May 7, 2016 Report Share Posted May 7, 2016 Yes, all of my POTS symptoms became infinitely better with a low dose of Paxil. Form what I understand, Paxil helps the body maintain BP better. For me, my heart is beating faster in order to maintain my BP. I got on Paxil and my tacky went down. I was slowly able to reduce my beta. I could also exercise more. The beta blockers helped my tachycardia but made me tired and lowered my BP -- so they worked, they were better than no meds . but the Paxil worked much better. It took me 4 years to work up the guts to try Paxil. I wish I had tried it from day 1. It might not work for you, but I want to at least encourage you that there is hope to find better medications i what you are taking isn't working. IT is a lot of trial and error, but it is worth it if you find the right med. I now don't need the Paxil or any daily meds anymore, by the way! Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted May 7, 2016 Author Report Share Posted May 7, 2016 Good for you, Yogini! I'm so happy for you and that the course of the illness went the way it did for you! I know it's a lot of trial and error with the meds. I will do some research on Paxil. If memory serves it is an SSRI. Appreciate all the input - thanks ? Quote Link to comment Share on other sites More sharing options...
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