katcanny Posted March 30, 2017 Report Share Posted March 30, 2017 Hi everyone! i have been to my specialist today and he has decided to try me on propranolol which I am very worried about as I have hypotension and a decent resting heart rate. I had to do blood tests today to check my adrenaline levels not sure what tests were done exactly and I noticed on my paperwork that for diagnosis it was phaeo? Or POTS so after researching because my specialist didn't tell me anything about what he was testing for I am even more scared that I might have a tumour in my adrenal glands. Has anyone else been through this testing before? Or have any information? And any experiences on propranolol or tips would be greatly appreciated. I will be starting on a very low dose overnight for a few days and working my way up. It has been a horrible day today and I want to pretend I am feeling better so that I can just forget about all of this. Quote Link to comment Share on other sites More sharing options...
Stephanieann Posted March 30, 2017 Report Share Posted March 30, 2017 I have been on propranolol for about 6 months. My blood pressure was always on the high side but a small dose doesn't change it too much for me. Its been great to keep my heart rate down and help with some on the anxiety feelings. No side effects, though I handle most meds pretty well. I also went through a bunch of different tests when first diagnosed. Tests on my adrenals, etc, because I was having symptoms that could be related to a problem with them but nope, all OK, just POTS. Hope you feel better soon and the propranolol works for you. Quote Link to comment Share on other sites More sharing options...
corina Posted March 30, 2017 Report Share Posted March 30, 2017 Lots of us have been tested for pheo as our symptoms seem pretty much the same. I haven't heard of anyone actually having pheo and will keep my fingers crossed this won't be the case for you also. I hope the propanolol works for you! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 31, 2017 Report Share Posted March 31, 2017 You have to have a relatively high dose of propranolol for it to lower your blood pressure a significant amount, I think usually 30mg is kind of standard for POTS. I was taking 30mg 3x a day and i think it was raising my blood pressure. Over the last few months my BP has been raised, slowly increasing. Ever since I've been off the propranolol my BP has gone back down to 115/80. I am not sure if there is a correlation but I do think propranolol might have affected it. Propranolol didn't help me TOO much, but it didn't keep me from going full "panic" mode. It's a widely used beta blocker though and has very good reviews with little side effects (I did a ton of research on it before taking it) So I wouldn't worry too much. It could possibly help you. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted April 1, 2017 Report Share Posted April 1, 2017 These articles might answer some of your questions. www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ https://www.ncbi.nlm.nih.gov/pubmed/23616163 Quote Link to comment Share on other sites More sharing options...
haugr Posted April 1, 2017 Report Share Posted April 1, 2017 Hey Kat, I'm curious how you have responded to the propranolol so far. Quote Link to comment Share on other sites More sharing options...
katcanny Posted April 2, 2017 Author Report Share Posted April 2, 2017 Hi haugr, i haven't started yet I was put on sudafed PE for a month and I'm having withdrawals from it, I can't tolerate even that broke out in a horrible skin rash all over my face and chest and got horrible anxiety from it which I'm slowly feeling better and the rash is clearing up after 3 days of no sudafed. I'm staying at my mums when I trial the propranolol as I have to take it over night I really don't want to even trial it as I'm concerned about breathing problems and my specialist said it could make me worst and drop my blood pressure and make me more dizzy which is what I'm trying to stop. It's been hard for me I have lost a lot I can't work, can't drive, can barely clean my house, I need help looking after my son, it's a good day if I manage to be able to get dressed. I don't want to trial things that make me worst I want to take something that will make me functional! I have only just now had blood tests for auto immune and adrenaline which should have been done months ago! It's ok for the specialists they get a **** load of money and can function while I'm living week to week and may lose my job! Quote Link to comment Share on other sites More sharing options...
haugr Posted April 2, 2017 Report Share Posted April 2, 2017 Dang Kat, I'm so sorry. This condition sure can be a life destroyer. Have you gotten the results back from the adrenaline and auto immune yet, or are you still waiting on it? And I'm curious, did they do the adrenaline tests while you were standing? Quote Link to comment Share on other sites More sharing options...
katcanny Posted April 2, 2017 Author Report Share Posted April 2, 2017 No results yet I'm hoping to call my gp tomorrow and that the results will be sent to him aswell as I can't see my specialist for three weeks! No I had to sit still for 15 minutes before I had to have my blood taken no talking or movement! Quote Link to comment Share on other sites More sharing options...
haugr Posted April 2, 2017 Report Share Posted April 2, 2017 Interesting. When my doc checked my adrenaline levels he had me lie down for 10 minutes before drawing my blood, then he had me stand for 10 minutes before drawing my blood again. My lying down results were relatively uninteresting, but my standing results showed my norepinephrine levels to be really, really high. Quote Link to comment Share on other sites More sharing options...
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