Becia Posted July 14, 2014 Report Share Posted July 14, 2014 Sounds bizzare, but that's how I feel now.Met with my cardiologist, who wanted me to track my symptoms for three months while he got my records from everyone. While I've got my blood pressure under control, my heart rate is running 145 and higher, and with it constantly running so high, I'm flat out exhausted, and it's wearing me out.He gave me a script of Bystolic (anyone take this before? It's a BB), and is referring me to Ohio State University for possible ablation of my sinus node and a pacemaker. I explained to him I'm a bit apprehensive of more ablations, since OSU told me it's very likely that my two ablations last year set this off in me, but I guess if they are "killing" the sinus node, there won't be anymore tachy?And my insurance requires preauthorization for my Bystolic script, so it may be end of this week before I get to try it. I am so frustrated. According to him, I'm the worst case he's seen. All I know is I'm exhausted. With me standing, my HR is reaching 180s, and I'm beginning to get concerned that it won't be backing down, but I'm not sure exactly how to go get help getting it regulated in the ER. Or if I even need to go to the er with this, it's POTS, tachy happens...Need a break from being that rare patient. Quote Link to comment Share on other sites More sharing options...
plaxico6 Posted July 15, 2014 Report Share Posted July 15, 2014 I currently take bystolic with no trouble. (Knock on wood!!!) ha! I tried several beta blockers before they found this one for me. My personal opinion is I would be scared of more ablations. That has permanent consequences. I have known someone who had too much ablated and is now pacemaker dependant. I'm always very leary of any treatment that can cause lasting/permanent consequences. I agree the ER is not a place to go for medication regulation. Prayers for some relief from your symptoms. "Need a break from being that rare patient"...oh how I totally understand that statement!!!! This is not a fun road to be on. Stacy Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 15, 2014 Report Share Posted July 15, 2014 I am on Bystolic too (1,25mg once per day) - together with the midodrine it seems to work well. I also have no side effects from it, it seems to be easy to tolerate (I know other patients who take it too).I would also be rather careful about further ablations! Pots can definitely be treated with medications as a first step, next thing would be to try finding the underlying cause.You will eventually get thru this rough time! I send you all the best wishes and tons of power!! Quote Link to comment Share on other sites More sharing options...
Becia Posted July 15, 2014 Author Report Share Posted July 15, 2014 I'm afraid of my bp dropping too much, it's been running 130/90 or in that range, but when I'm sick (like now, even though I think this is just a crash and I'm exhausted), it falls a lot lower. Today, it was 118/88. Even after I got home and drank some water, it only came up to 121/90. And all of this bp is on a 30mg a day dose of midodrine (split 10mg at a time of course), and a double dose of florinef. So I know I'm coming down with something if it's bottoming out after all of this.I've never had the tachy sustain for this length of time. Normally I can lay down for a bit, and I'm okay, but even laying down has been agony because it's going so fast and so hard. And of course, my bed is angled, so it feels like I'm standing the entire night, which doesn't make it better. My friends had to pick me up off the floor last night because I kept passing out. The outs were bringing my hr down a smidge. But the moment I moved again and came to, hello crazy spike! I couldn't stay concious enough to get my Iv going last night, I know the fluids would help, but I keep passing out, knowing my luck I will screw something up, and not be awake to fix it in enough time, and the Iv stuff freaks them out.I'm giving my body today to see what happens, and then I'm calling doctors to beg for something to make this stop so I can rest. It's wearing me out. I know some who have a higher hr, so I'm trying to not complain about it, but I'm just like "something has to give". And yeah, I'm freaking about more ablations. I asked his opinion on how ablations are contridicted in us, and how that might impact everything, and he really didn't have one. The nice thing was he did admit I was a little out of his realm of treatment options, since I'm such a zebra (although I'd rather be a fabulous flamingo, they are pink and cute, and stand on one leg, whilst I can't stand on two, lol), and he didn't want to do anything to endanger me further. He's none to happy I'm still using a wheelchair while out, but once again, they frown upon you laying down in the walmart parking lot. Better safe than sorry. Quote Link to comment Share on other sites More sharing options...
Goschi Posted July 15, 2014 Report Share Posted July 15, 2014 Becia, don't worry too much about Bystolic! For me, it actually lowered HR, not BP! Just be careful with the dosage, maybe start with 1,25mg and look what it does! For me it was particularly helpful for supine HR - before Bystolic, I sometimes couldn't get my HR down after standing, Bystolic really solved this problem! Quote Link to comment Share on other sites More sharing options...
Becia Posted July 15, 2014 Author Report Share Posted July 15, 2014 LOL, yeah, he's starting me on 10mg off the bat. I was having to research the size of pill because I wasn't sure I'd be able to swallow it, and everyone's going "titrate!" and I'm like "Homeboy is going full force here!"Yeah, standing, laying, sitting, my BP has been INSANE lately. I totally need a break from the 140's. Quote Link to comment Share on other sites More sharing options...
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