Goodr189 Posted June 22, 2016 Report Share Posted June 22, 2016 So it's been almost 4 months since my last visit to the ER and since my initial diagnosis of POTS. Had a terrible episode this morning, tunnel vision, dropping sensation in chest with a heart rate almost hitting 180 and not going down while laying in bed with my feet up. In a half delirious state I called the medics and that's that. First of all, holy crap, IV rocks! Too bad I can't wake up every morning and start the day off with a bag. Second, I haven't been on any medication to treat POTS since my initial diagnosis. My PCP tried Florinef but I had some adverse reactions. Since then I've been maintaining myself with lots of salt and fluids. (Apparently not good enough as we saw today). My morning heart rate with the salt and fluid routine is in the high 90s-120 when up and about which kind of indicates to me that I am not doing great. After my ER visit today I called up my PCP and asked him if I could start on a beta blocker to get my heart rate down in the mornings. This was recommended by the nice lady at the Neurological Associates of Washington who I talked to to set up my appointment with the only POTS doctor in Washington. What can I expect starting my mornings with Acebutolol? I still take a low dose (0.25) of Klonopin in the mornings but its mostly due to the anxiety I had before POTS (probably caused by it) and maintaining my sanity with all the heart issues. Does anyone else here have experience with Acebutolol? Does it work right away or will it take a few days to kick in? Thanks! Quote Link to comment Share on other sites More sharing options...
Clb75 Posted June 22, 2016 Report Share Posted June 22, 2016 I've been on acebutolol for 2 years now. I tried atenolol first which made me really dizzy, then I tried betaxalol which was too mild and didn't help enough. Acebutolol has worked really well for me. I haven't had any problems with it, though I have with other meds i've tried. I can't remember how long it took to work but I don't think it was that long. Good luck! Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted June 22, 2016 Author Report Share Posted June 22, 2016 Scratch that, I'm on atenolol, not acebutolol. What dosages did you take that made you really dizzy? My Dr has me starting with 25mg. Is taking it once every morning okay? My heart rate tends to go down later on during the day once the adrenaline wears off and I never have any late afternoon/night episodes. I don't want to take it in the evening either for fear that it will cause my heart rate and BP to drop too low. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted June 22, 2016 Report Share Posted June 22, 2016 There are a few other docs who treat pots in your area. I live a few states over and travel there once-twice a year. I'm very sorry you had this episode. Hang in there. I've had pots for 3 years now and it looks like it's here to stay in my case. I didn't tolerate betablockers well. Currently on no meds. Iv fluids worked wonders at first... Now not so much :/ Quote Link to comment Share on other sites More sharing options...
Clb75 Posted June 22, 2016 Report Share Posted June 22, 2016 I can't remember the dose I took, but it was whatever the starting dose is, and I believe I took it in the morning. It dropped my BP by 10 points, bottom number only, so I was around 90/60's. This was at the beginning before I was on Florinef, midodrine, fluids and salt etc. Have you taken it yet? I think you'll know pretty soon if it's working or not, hope it works out for you. Quote Link to comment Share on other sites More sharing options...
statesof Posted June 22, 2016 Report Share Posted June 22, 2016 Hey Goodr I was on atenolol for a short while, my bp is not affected by my POTS; I found it to make me feel more "pass out-ish", I just felt like I was in a cloud the whole time on it and found it impossible to concentrate on more than one thing at a time. It lowered my bp a bit but not an extreme amount, for me it was not a helpful medication, but I never had hr's as high as yours that you mentioned. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 23, 2016 Report Share Posted June 23, 2016 I haven't taken ate no lol but I did try 2 different beta blockers and had very different experiences on each. Metoprolol did help my heart rate and I didn't feel any fatigue from it. Propanolol did not help my heart rate and made me feel like a zombie on only a 1/4 of the lowest dose tablet. (I ultimately couldn't take beta blockers because they made me a bit wheeze and it turns out I have MCAS. BB are contraindicated for MCAS for just that reason.) But, my point is, if this BB doesn't work for you, another may if you and your doc are willing to try to find the right fit. Quote Link to comment Share on other sites More sharing options...
theabrodrigue Posted June 23, 2016 Report Share Posted June 23, 2016 It would be interesting to know what the weather is like where you are. I find my POTS symptoms flare up and I feel terrible when the barometric pressure drops and a front comes through. Those are the times when I feel the same "dropping" sensation that you described. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 23, 2016 Report Share Posted June 23, 2016 Barometric pressure changes are a problem for me too both with POTS and migraines. Quote Link to comment Share on other sites More sharing options...
Goodr189 Posted June 23, 2016 Author Report Share Posted June 23, 2016 I am in Seattle here and the weather has been all over the place lately this spring/summer. 80s one day, 60s the next. Haven't paid much attention to the barometric pressure but I would assume the rapid change in daily temps are related. Right now 1016 mb and I woke up with higher tachycardia than usual Thank god for the beta blockers, my HR has been under 100 all day where as it would probably be 110 avg without them. I still feel "off" when on the beta blocker like tense but not tense if that makes any sense whatsoever. Maybe it's because I've only been on them for 2 days. Hopefully the side effects wear off soon. Quote Link to comment Share on other sites More sharing options...
Kaitlyn Posted June 24, 2016 Report Share Posted June 24, 2016 Hi Goodr - sorry to hear you had to go to ER again. But woo hoo the IV fluids do help right?! I started on Metoprolol (25 mg in the am and 1/2 tab in the eve) but my BP was tanking. Really tanking. I have a new EP/Cardio who put me on Nadolol 10 mg morning and night. I felt weird at first for about a week I guess during the switch but then things leveled off. Before being on a B blocker my resting HR was 95-100 and walking up the steps could cause it to shoot up to 145. Now my HR stays in the 65-80 range. When recumbent exercising I have a hard time getting it to my base rate for Physical Therapy. Happy you're getting some treatment. Beta blockers are tricky and it can be hard to find the right one but it is worth it to stick with it! Good luck Kaitlyn Quote Link to comment Share on other sites More sharing options...
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