brethor9 Posted January 20, 2014 Report Share Posted January 20, 2014 Hey everyone Over the last several weeks to a month I have been experiencing serious pain and swelling in my legs.....all tests have ruled out blood clots but no one can figure out what is causing the edema. Also at the same time I have developed a chronic unproductive cough, shortness of breath, muscle aches, etc....this all seemed to start around the time I started taking my beta more often..... all my docs don't think its related but I really wonder?? anyone have similar side effects??ThanksBren Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 20, 2014 Report Share Posted January 20, 2014 I can only comment on the shortness of breath. I get and have gotten episodes with shortness of breath. While on a beta blocker, the frequency increased dramatically. Also the episodes were more intense. When I had a day where I struggled to breathe all day, I got off of the beta blocker. I have not had that level of trouble sense. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 20, 2014 Report Share Posted January 20, 2014 If your beta blocker is a cardioselective beta blocker, it shouldn't be the culprit. Since I've had asthma in the past, they made sure mine was cardioselective. Also I think that there are many reasons for edema. Have they checked your kidneys? Have you increased your salt intake? Or it could just be pooling of the blood due to malfunctioning baroreceptors in your vessels. That could also be the case with your shortness of breath. I'm being evaluated for the same thing on Wednesday. They want to check cardiac blockage, but to be honest, I just think it's the pooling from the dysautonomia. There was a study done not too long ago through DINET, I think where they determined that someone with POTS can experience a shortness of breath like a patient with COPD! Remember Rich...he had something similar...maybe ask him. Hope you find out the reason. Prayers for you!! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted January 21, 2014 Report Share Posted January 21, 2014 So sorry for your symptoms! I used to be able to take Toprol XL (early on after my pots diagnosis 10 years ago) but I tried taking it last year for migraines and I felt very short of breath. I am on Singulair and Asthmanex which control my asthma well but there is something about the Toprol that makes me feel short of breath. I can't take it either. It's definitely worth trying to go off to see if this is the cause.Hope this helps,Lisa Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 21, 2014 Report Share Posted January 21, 2014 If you are on a non selective blocker it probably is the culprit. When I was on propranolol it made me short of breath constantly and gave me a terrible cough. Which one are you on? I also had more aches and pains on it as well. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 21, 2014 Report Share Posted January 21, 2014 I was on a selective blocker and it still gave me fits. It was still listed as a possible side effect. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 21, 2014 Report Share Posted January 21, 2014 Hi brethor! Bb's are contraindicated for mcas patients because they can cause breathing issues for us. I was on my bb before my mcas dx. My breathing/shortness of breath got progressively worse. Once I was dx'ed with mcas, I asked the immunologist if I should be on the bb and he said absolutely not. I switched to verapamil which is a calcium channel blacker for my pots. My breathing improved by about 50%. I can't say I experienced any edema from the bb, but my cardiologist just had a lower extremity duplex (ultrasound) done on my legs to test for venous insufficiency in my legs because I have a lot of fluid build up in my legs (but not my feet). I haven't received the reports yet but I was told by the tech performing the test that one of the veins that they image is extremely small in both of my legs and is definitely part of my problem. Quote Link to comment Share on other sites More sharing options...
castronovo112587 Posted January 22, 2014 Report Share Posted January 22, 2014 I hope it helps find the cause of your fluid build up katybug. I definitely have to look into mcas testing as I have every symptom and my breathing was terrible on the Bb and pain meds like codeine and morphine have caused me to go into anaphylaxis. This forum is so wonderful as it has helped me narrow down my problems quite a bit and it's so nice to talk to people I can relate to. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2014 Report Share Posted January 22, 2014 Hi Rosey! Yes, mcas is such a complicated beast. I hope you are able to determine if you have it and if so get good treatment for it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2014 Report Share Posted January 22, 2014 Oh, I should have mentioned that the bb issue for mcas, is that it can actually cause mast cell degranulation which is how it causes breathing issues. It's not an asthmatic reaction, it's more along the lines of an anaphylactic reaction. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 22, 2014 Author Report Share Posted January 22, 2014 Thanks guys yeah I am definately thinking it's the beta......maybe the build up over time has just become too much for my mast cells.Katybug! we are having the exact same issues with the leg swelling.....for me it is all in my thighs....it is driving me bonkers because it has actually become painful I just found out I have some complex pelvic cysts and they are wondering if that could be causing some of the swelling issues.... it definately wouldnt be causing the breathing and cough issues though. I have never had real asthma issues and find it odd that someone could suddenly get asthma over a couple of months. I think I will look into a calcium channel blocker maybe..... please keep me posted about your leg swelling....hope you get some answers!! hugsBren Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 22, 2014 Report Share Posted January 22, 2014 Brethor,Sorry it is hurting you. My swelling is in my calves and thighs. I have a little peddler exercixe device that takes the place of an expensive and huge recumbent bike for me. I have neither the room nor the funds for the real thing. Anyway, I sitt on my couch and peddle for 15 - 30 minutes once or twice a day when I feel up to it. It definitely helps move some of the fluid out of my legs. I just peddle slowly. ...not like I'm trying to have a cardio workout....so that it helps the swelling but I don't make myself sick from my exercise intolerance. I got my peddler for about $50. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 23, 2014 Author Report Share Posted January 23, 2014 Thanks Katybug I am going to look into getting one of those.....I definately need something to strengthen my legs but I just cant be upright on anything.....especially now with all the oxygen issues where did you happen to buy yours??Bren Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 23, 2014 Report Share Posted January 23, 2014 I ordered mine off of QVC here in the US. It might be possible that QVC England has something similar. Or you might try Amazon as I know I've seen similar items on there too. The other bonus of these little gadgets is you can put them on the table top and use your arms to peddle them too if you need to get some movement in your arms. I can't always do this but I get it in sometimes. So, I received my test results today.....significant venous insufficiency in rt and left mid-calves in all 3 veins that they image causing significant blood pooling per the report. No deep vein thrombosus. I don't know that is really news but it's good to have it documented. II'll see what my cardiologist has to say about it. I already use compression stockings so I don't know if there's anything else to be done. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted March 28, 2014 Report Share Posted March 28, 2014 I have been taking Atenolol for over a year. I am supposed to take 50mg twice a day, but I can't tolerate the morning pill with the fatigue I already have. So, I have been taking 50mg at night. I have gained 35lbs during this time, and am dealing with a lot of swelling in my legs, abdomen, face, neck, hands, and arms. My stomach looks like I am nine months pregnant most of the time, and I experience early satiety daily. When I walk to the shuttle after sitting at work, my calves and shins hurt to the point I have to force myself to make it to the shuttle. My GP diagnosed me with edema this week, and if things don't improve, she wants me to have an ultrasound of my heart. I am waiting to hear back from my cardiologist for his opinion. I also take a low dose of Zoloft, and Klonopin, but the doctors don't think the medications are the issue. I just changed my birth control pills to see if that helps. I do find exercise helps with the swelling, but it is only temporary. I eat a low sodium, plant based, whole food diet, so my doctors are baffled as to what is causing the weight gain and swelling. Quote Link to comment Share on other sites More sharing options...
xRobin Posted March 29, 2014 Report Share Posted March 29, 2014 Maybe the florinef you're taking could be the culprit for the swelling? I think edema is one of the major side effects. Bisoprolol can cause it as well, maybe it's the combination of the two that is the problem?Bisoprolol is supposed to be the most cardioselective of the beta blockers, I'm an asthmatic and can tolerate it but many can't. I swelled up a bit when I first started the beta blocker but it's gotten a lot better.You can definitely develop asthma as an adult. I did! Good luck with your tests, I hope this resolves for you. Quote Link to comment Share on other sites More sharing options...
Gemma Posted March 31, 2014 Report Share Posted March 31, 2014 Hi. Everytime I tried a beta blocker I develop really severe cough, feels like asthma attacks. I tried coreg and then atanolol, really small doses. I have chronic cough for the past 2 years, that are of unknown cause. Have done many tests for asthma and all are negetive, but still have caugh. I went on gluten free diet and my cough decreased by like 80%. However, when I take beta blockers, it gets so severe, I feel like I am having nonstop asthma attacks. I even went to ER couple of times for it. When i told my doctor, he said that you only cough from beta blockers if have asthma. Well I dont have asthma, and cough from it. The cough starts the next day after going on beta blocker. When I stop it, it still stays for like 1-2 weeks and then subsides. I am trying a calcium chanel blocker verapamil now. I got it for my chest pains, to try and see if it could be vasospasms. It does help with chest pains and I have no cough from it. However, i feel more tired on it. I really hope the tiredness goes away as my body adjusts to the med. I also have suspicion that I might have MCAS, however i didnt have proper testing for it yet. Does anyone know if calcium chanel blockers do simmilar things for POTS as beta blockers do? I am so scared of these heart meds. Are they worse for our bodies then beta blockers. I am asking because wonder why doctors usually prescribe beta blockers for patients and calcium blockers are reraly priscribed. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 31, 2014 Report Share Posted March 31, 2014 I'm on verapamil because I had to stop bb due to mcas. I also took verapamil a long time ago to try to control migraines. I think they try bb first because they tend to be more effective on lowering heart rate as opposed to bp. Verapamil can lower bp but is a second line of defense for pots when you can't take bb. I was a little tired at the beginning but it no longer affects me. I haven't had any other side effects. I actually have low bp and I haven't had a problem with it dropping my bp. Of course we're all different. But I haven't had any mcas problems with verapamil. Quote Link to comment Share on other sites More sharing options...
BSmith85 Posted April 1, 2014 Report Share Posted April 1, 2014 I am on the same dosage of atenolol (though I often cut in half) as well as Klonopin at night pretty much as needed. I haven't experienced the lower extremity swelling, pain, etc but I do have a persistent unproductive cough especially when lying down. Quote Link to comment Share on other sites More sharing options...
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