andybonse Posted January 28, 2014 Report Share Posted January 28, 2014 Hi,My BP is usually like:110-120/58-66130/61110/50What does this mean, could it be low blood volume? Could the systolic be compensating for the lower diastolic when it jumps it from movement?Trying to rise it, starting florinef tomorrow. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 28, 2014 Report Share Posted January 28, 2014 Hi Andy,Sorry to hear you aren't feeling well. I have been taking florinef for around 2 years now with good results. It has lowered my heartrate and presyncope. Make sure to get your potassium levels tested and eat lots of potassium rich foods as it can deplete these levels(which IS dangerous). Quote Link to comment Share on other sites More sharing options...
andybonse Posted January 28, 2014 Author Report Share Posted January 28, 2014 Thank you,What was your before and after BP, My HR goes from 60's to like 100 and feel light headed and short of breath, weak, fatigued most the time.Hoping this is an answer for me.Has it changed your life?With the Potassium, my levels are normal had them tested a few weeks back and a few month back before that.Will a normal potassium supplement of 99mg 4 times a day and high potassium food diet be enough or would you recommend the slow K-dur stuff from GP?Im surprised my doctor didnt mention this either. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 28, 2014 Report Share Posted January 28, 2014 Unfortunately, I think the florinef actually made my Shortness of breath worse. My BP has gone up around 20 points consistently. During my pots episodes it would drop down to 80/40 with a heart rate of about 160. Now i hang out around 110/65-80 which is normal for me. Florinef changed my life because it allowed me to change my life. It wasn't necessarily a miracle drug but it allowed me to get a hold of myself and the disease. Be sure they continue to test your potassium if you are beginning florinef because it depletes those levels. I tried food for a bit, which did not work (avocados, bananas, orange juice, potato (the skins), Revive Vitamin Water, and certain brands of black beans are high in potassium. I take the Klor Kon powder packets because i was not digesting the normal potassium pills(which is typical). Most doctor's probably just aren't aware because this is a newer disease. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 28, 2014 Report Share Posted January 28, 2014 Florinef has really helped me as well! I have hypovolemic POTs (19.3% total blood volume deficit). It makes my drops in blood pressures much less severe than what they were before. I had some as low as 69/47 with HR 163. Normally they would be around 80/60 in the mornings without Florinef and my HR would be 130-160's. After starting the Florinef, my BP's are more stable, not nearly as low. I still occasionally get some low BP's but it's not daily. My HR still increases regardless but it doesn't usually get past 130 now if I'm just standing. I take some other medications as well. I will say though that if you are hypovolemic you tend to generally have narrow pulse pressures, not high. So pulse pressures <25. Yours are actually normal. Normal people can have PP of 40-100 (100 is generally if exercising though). Your MAP is also good, it should be between 70-110 and you need at least 60 to sustain organ perfusion. Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 28, 2014 Report Share Posted January 28, 2014 Also with the potassium, you will want it checked after you have been on Florinef for about a month or so. Mine went from 4.2 down to 3.1 once I started the Florinef. I am now on potassium and it will be checked every 3 months routinely. Florinef works by retaining sodium at the expense of getting rid of potassium so even if you had a normal level before starting the Florinef, it doesn't mean it will stay normal after you start it. Quote Link to comment Share on other sites More sharing options...
andybonse Posted January 29, 2014 Author Report Share Posted January 29, 2014 Thanks, yeah MAP is normal and PP. But im not exercising its just at rest.Makes me wonder if peripheral resistance isnt enough? Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted January 29, 2014 Report Share Posted January 29, 2014 It's still normal though, even without exercising. The 50 may be just a little bit low. What are your heart rates with your BP's? It's actually a normal response for BP to increase when you go from lying - sitting and then to standing. It will go up initially and then normalizes out in normal people who don't have high or low BP. Quote Link to comment Share on other sites More sharing options...
andybonse Posted January 29, 2014 Author Report Share Posted January 29, 2014 Hr laying is like 50-64. Sitting up varies depending on how high chair is 58-70 and standing 90-110.Im worried after reading about aortic insufficiency matches this lol, I had echos though Quote Link to comment Share on other sites More sharing options...
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