Kristina Posted September 28, 2017 Report Share Posted September 28, 2017 Hi all, I was previously diagnosed with POTS in May 2017. My PCP wanted to try me on propanolol for around three months, as my blood pressure used to tend to be on the higher side of normal, I took 10mg twice a day from May to around mid-August when I felt like I started feeling worse after I would take propanolol instead of getting better. When I initially started taking it, it took away a lot of my symptoms including the head rushes, vision disturbances, and pounding heart rate when I would go from sitting to standing or lying down to standing. This was a huge relief because I'm 25 and I believe I've had POTS for most of my life, so I thought all of the symptoms were normal things that other people also went through. I thought propanolol was my cure all, but then in mid-August when it stopped working I just felt fatigued all of the time, no energy, so hard to concentrate, and the tachycardia was back when I would stand up. I took my blood pressure 89/65/129. I had gone from having normal to sort of high blood pressure to having low blood pressure. I stopped taking propanolol. My blood pressure has normalized since then at a normal levels like 104/66/92 or 113/78/91 when sitting. Upon standing, the first two numbers don't change much, but here are the results of my most recent test from today after laying down for 10 minutes and then standing up: 0: 118/87/133 2: 109/91/150 4: 112/94/161 I stopped after four minutes (should have stopped after two). I now feel awful. I feel shaky, and I should have stopped way sooner but wow. Needless to say, I'm making an appointment with my PCP and getting my cardiology referral (which I waited on because propanolol was working). What else can they do for me? I have increased my salt as advised by my PCP and that has been consistent since I was diagnosed. I already drink multiple liters of water in a day and have for most of my life. I'm curious about other types of medications since all I really have heard of are beta blockers, and that doesn't seem to be working for me anymore. I am hoping to be proactive and do some reading before my appointment! Thanks all! Quote Link to comment Share on other sites More sharing options...
Clb75 Posted September 28, 2017 Report Share Posted September 28, 2017 I had to go through several beta blockers before I found one that worked, maybe you could try a different one to see if you feel better. A lot of people also use midodrine and florinef to help raise their BP too. Quote Link to comment Share on other sites More sharing options...
p8d Posted September 28, 2017 Report Share Posted September 28, 2017 Has anyone discussed Florinef to help you retain blood volume? It raises bp and can be used instead of, or in addition to mestinon or midodrine. I too tried several beta blockers before I found Bystolic which doesn't make me so fatigued but I think that it's starting to wear off which seems to happen to many of us. I don't know that anyone knows why. Side effects are always the bug bear. I can take Florinef but not mestinon or midodrine (severe diarrhea). Unfortunately it's trial and error because we are all so very different. Quote Link to comment Share on other sites More sharing options...
halffull Posted September 28, 2017 Report Share Posted September 28, 2017 I had a similar experience with propranolol, though I was on it for about 4 years before it started to lose it's effectiveness. I've tried Florinef and Atenelol, but experienced bad side effects that didn't seem worth it. So I'm off of meds for now, which isn't really working out either lol. I just got really sick of trying pill after pill and suffering the side effects. I hope you find something that works for you! Quote Link to comment Share on other sites More sharing options...
HangingByAThread Posted September 28, 2017 Report Share Posted September 28, 2017 I cannot tolerate beta blockers so I take Methyldopa, prescribed by Vanderbilt. I swear by it. Quote Link to comment Share on other sites More sharing options...
Weyland Posted September 28, 2017 Report Share Posted September 28, 2017 A lot of people have good luck with Ivabradine since it doesn't affect blood pressure.... Quote Link to comment Share on other sites More sharing options...
TCP Posted September 28, 2017 Report Share Posted September 28, 2017 I was on Propranolol and after a while it made me feel worse. I stopped taking it and started on Ivabradine. I was OK on this but stopped after a while as I got really sick and since I've been diagnosed with a pituitary tumour. The steroid for that has calmed some of my POTS symptoms but started up another set. Propranolol made the Mast Cell and/or histamine issues worse. Quote Link to comment Share on other sites More sharing options...
Kristina Posted September 29, 2017 Author Report Share Posted September 29, 2017 4 hours ago, TCP said: I was on Propranolol and after a while it made me feel worse. I stopped taking it and started on Ivabradine. I was OK on this but stopped after a while as I got really sick and since I've been diagnosed with a pituitary tumour. The steroid for that has calmed some of my POTS symptoms but started up another set. Propranolol made the Mast Cell and/or histamine issues worse. I have been reading up on mast cells and mast cell activation syndrome and it matches my symptoms. It took three months for things to get worse with the propranolol for me. How long were you on it if you don't mind me asking? A few people here have mentioned ivabradine and flourinef so I will be reading up on those. Thank you! Quote Link to comment Share on other sites More sharing options...
Kristina Posted September 29, 2017 Author Report Share Posted September 29, 2017 After my heart rate issues yesterday, I've been feeling awful since. I got a headache a few hours after that 161 heart rate reading, and I still have it today and it's been varying in severity. My face has been perpetually flushed, especially my cheeks, but the worst of it is definitely this shortness of breath, worse tachycardia than normal, and chest tightness which came on this morning and hadn't gone away since (12 hours later). I've also been having issues with temperature regulation and sweating, but that's normal for me. I am definitely bringing up mast cell activation syndrome during my appointment with my PCP next month (earliest I could get sadly) and I guess we will go from there. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 1, 2017 Report Share Posted October 1, 2017 HI, i am not sure I understand the numbers you posted. Blood pressure is usually a systolic over diastolic number like 120/80 or 90/60. One single test on any given day doesn't necessarily mean that your medication has stopped working. You may be having a flare up as we all do from time to time even when we are on meds. Sometimes the flare ups last for weeks. There are so many medications and treatments. You may want to read the diner main page which describes many of them. The treatment is really individual so the best thing is to find a good, knowledgeable POTS doctor who can help you figure out the treatment based upon your symptoms. Quote Link to comment Share on other sites More sharing options...
TCP Posted October 10, 2017 Report Share Posted October 10, 2017 On 29/09/2017 at 2:28 AM, Kristina said: I have been reading up on mast cells and mast cell activation syndrome and it matches my symptoms. It took three months for things to get worse with the propranolol for me. How long were you on it if you don't mind me asking? A few people here have mentioned ivabradine and flourinef so I will be reading up on those. Thank you! Hi! I was on and off it over a three year period. Quote Link to comment Share on other sites More sharing options...
TCP Posted October 10, 2017 Report Share Posted October 10, 2017 On 01/10/2017 at 5:06 AM, yogini said: HI, i am not sure I understand the numbers you posted. Blood pressure is usually a systolic over diastolic number like 120/80 or 90/60. 3 Systolic, diastolic and heart rate Quote Link to comment Share on other sites More sharing options...
Kristina Posted October 27, 2017 Author Report Share Posted October 27, 2017 I just wanted to provide an update. I saw my PCP and got a referral to see a cardiologist. The first thing the cardiologist is having me do is wear a holter monitor for 24 hours and track my symptoms at the same time. I'm also being tested for mast cell activation syndrome with the tryptase test as well as a 24 hour urine test. PCP said the worst case scenario was that I have an endocrine tumor or pheochromocytoma. PCP is leaning towards MCAS though and did prescribe me zantac and zyrtec to see how that helps. Quote Link to comment Share on other sites More sharing options...
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