Apple86 Posted June 7, 2018 Report Share Posted June 7, 2018 Hi everyone. I'm yet to be officially diagnosed with PoTS, although multiple stand tests suggest it is PoTS. I'm currently waiting for my first cardiology appointment, which is in 3 weeks: the NHS is England is slow! In the meantime I'm taking Propranolol to control my heart rate. My doctor prescribed this for anxiety before she realised that I probably have PoTS! I've been taking it for 4 months now and have tried various doses. At the moment I'm on 20mg per day, which keeps my standing heart rate below 100 for most of the day but wears off into the evening and my heart rate can then go above 100 but below 120. As I'm not being guided, I'm not sure whether to increase my dose to help me over the next 3 weeks? What dose of Propranolol or other beta blockers do you guys take? Best wishes. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 7, 2018 Report Share Posted June 7, 2018 I have tried several BB's but the one that helps me most is Carvelidol. All of them I started at lowest dose and then increased slowly until they were effective. What I was told by specialists is that they should be taken twice a day to avoid laps in effectiveness. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted June 7, 2018 Report Share Posted June 7, 2018 From my understanding, Propranolol has a relatively low bioavailability and also needs to be taken more frequently in order to avoid break through symptoms, which seems to be what you're experiencing with the elevated heart rate in the evening. When I was on Propranolol I was instructed to take it 3 times a day. After trying a few different beta blockers it was determined that my body doesn't react well to them, so now we're trying a calcium channel blocker (Diltiazem). It helps lower my heart rate, but so far hasn't improved my hypertension. Best of luck to you!! Quote Link to comment Share on other sites More sharing options...
corina Posted June 7, 2018 Report Share Posted June 7, 2018 Could you ask your family doc to help guide you? I so understand you need help with this! Quote Link to comment Share on other sites More sharing options...
Apple86 Posted June 7, 2018 Author Report Share Posted June 7, 2018 Thanks for your comments. It's interesting to hear that Propranolol should be taken multiple times per day. When my doctor prescribed it for anxiety she recommended 2x 40mg tablets per day. But that was making my heart very slow when sitting (as obviously it wasn't anxiety). So I decreased to 2x 20mg, which seemed to work best. But then I read a journal article suggesting that Propranolol tends to be most effective for PoTS at a lower dose: 10mg-20mg per day. So I reduced to 20mg in the morning only. I'm worried to go back to 2x 20mg as I know I'll soon have to wean off them for my tilt table test. But I know this dose is best for me. Does that sound like a high dose? I can't really ask my doctor for advice as she doesn't know much about PoTS at all and seems to want to pass the buck on to the cardiologist. So I've got another 3 weeks of worry ahead! Quote Link to comment Share on other sites More sharing options...
Shannoncr Posted June 7, 2018 Report Share Posted June 7, 2018 i’m a weirdo & have tried quite a few beta blockers. my first one was propranolol (I forgot the dosage but it was the lowest dose) but after a few months of taking it, my heart rate dropped in the 30s & I had to come off it. (This was back when I had low blood pressure) i was also prescribed this for anxiety. the next one was atenolol (12.5) i did well on it but the same thing happened. i couldn’t take it if my heart rate was less than 60 & eventually they took me off it altogether. (also back when I had low blood pressure) then I went on losinopril (2.5) & carvedilol (3.25 twice a day) - I was now diagnosed with hypertension - it worked for a month & the PVCs came back with a vengeance. so they bumped losinopril up to (5) & carvedilol (6.25 twice a day) which worked for a month, then the PVCs got worse & all the while I was still having tachycardia. (my bp was controlled on these meds but heart rate/PVCs weren’t) now i am on metoprolol succinate ER (25) after the 12.5 was unsuccessful but i also have metoprolol tartrate for breakthrough PVCs. still have tachycardia & often my bp is still high but i am so sensitive to meds my cardiologist didn’t feel comfortable raising it until i see neuro/getting second opinion. Quote Link to comment Share on other sites More sharing options...
Apple86 Posted June 7, 2018 Author Report Share Posted June 7, 2018 Oh wow, I didn't even realise all these types of beta blockers existed! I've clearly got a long way to go! I have no idea what my BP is doing when I stand up but I know it's in the healthy zone when I'm seated. I haven't fainted in my life so I assume my BP is OK even when I'm on Propranolol and my heart is forced into going slower. I do wonder why, if my heart needs to go faster to maintain blood flow to my head and heart, I'm not fainting or having a stroke/heart attack when my heart is forced to go slower with betas? Surely this would mean not enough blood is getting to my head and heart? I have so many questions to ask and waiting to see a cardiologist is torture and everyday I'm convinced I'm going to die. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted June 7, 2018 Report Share Posted June 7, 2018 I know it's scary, I've had those "This is it, this is the attack that's going to kill me" moments. It's not fun but I think we can all relate to that at some point. Please be assured that pots will not actually result in that though... Dysautonomia can be quite difficult and challenging to manage, probably because it's still unknown by a lot of doctors making it hard to treat, but also because everyone's bodies react differently, either during a flare up or to medication. Same goes for beta blockers, people can have different reactions to them. Your heart rate can be low and still circulate oxygen to your organs properly, but it can depend on the individual as well as their volume of blood. From my experience, once my heart rate dips below 60 I start getting dizzy and need to lay down. That's one of the reasons Propranolol didn't work for me is because it decreased my heart rate way too much even on the lowest dose. If it helps you could always purchase a blood pressure monitor for at home, which can also tell you your heart rate. So whenever you're feeling symptoms, take a reading, keep a journal and pass on any information to your physician to determine best treatment options Quote Link to comment Share on other sites More sharing options...
Apple86 Posted June 8, 2018 Author Report Share Posted June 8, 2018 Thanks jklass. I seem to be OK when my HR goes low. It often goes to 50 when I'm sitting down due to the beta blocker. But before my PoTS started I always had a low resting HR of around 58 as I was so physically active. I've got a BP monitor and a pulse oximeter. I've had severe health anxiety for most of my life so I've got all the gadgets! Even with daily health anxiety it still came as a shock when I realised there was actually something wrong with me. It's basically my lifelong worst nightmare - being told I've probably got a chronic disease that people don't know much about. But at the moment I'm quite high functioning as, with the beta blockers, I'm still able to get around and do some gentle exercise. I'm just hoping I'm not progressive (my new worst nightmare!). Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 8, 2018 Report Share Posted June 8, 2018 I take 25mg extended release metoprolol at night. It helps, no doubt, with the pounding and tachycardia. If I take another 12.5mg, which helps more, my heart rate goes to about 50 and I get a lot more PVCs when that happens for some reason. It's strange but enough to keep me from doing that even if my cardiologists tell me to take extra if I need it. I just hate the feeling. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 10, 2018 Report Share Posted June 10, 2018 Propanlol effected my breathing worse than it is so my pulmonogist reccomended metopelol ( sorry medication spelling sucks ) My cardiologist agreed and i have been taking it for about a year. I take 25 mg twice a day but upping it is in my near future. I have too many breakthroughs right now. My midodrine is more effective at this point. My POTS specialist wanted me back on the propanlol last fall but i told him no way. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 10, 2018 Report Share Posted June 10, 2018 Selectiveness to cardiac receptors is a big reason why I could only be on 3 of the beta blockers which don't do as much in the lungs. Metoprolol doesn't affect my breathing. Quote Link to comment Share on other sites More sharing options...
yogini Posted June 10, 2018 Report Share Posted June 10, 2018 It is like asking what do you take for a headache Advil or Tylenol? Advil works for some, Tylenol for others and some others need a different med entirely. Some don’t respond to meds at all. The dosing is also totally different based on the med and the person. Each pill of Advil is 200mg. Each Tylenol is 500mg and so the dosing of 2 meds can’t be compared. And prescription meds like betas are even more complicated than Advil and Tylenol. By reading what doesn’t work for someone, you might get discouraged about something that could work for you. The best thing is to try for yourself what your doctor suggests for you. Quote Link to comment Share on other sites More sharing options...
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