Questions After Ep Appt.

[Clash0501]

I had an appointment with my EP yesterday. He had started me on Nadolol the week before 20mg twice a day but since it was Friday and I have had big bp drops with other bbs I chose to do 10mg twice a day.

The appt. went well, I had a notebook of questions. He answered most of them. He doesn't specialize in POTs but I haven't found anyone in my state who does. I'm set up to go to Mayo-Jacksonville the first of Feb but I may put that off for now. I know I have POTs, EP says it is classic Primary, whatever that means. Been on a month long heart rate monitor and all looked good as far as other issues.

He is fine with me doing 10mg in morning and 10mg in the evening and moving up as needed, if needed. And that my fluid and salt loading sounded appropriate. Blood pressure is generally around 110-117/68-72 regardless. But here are the questions I forgot to ask:

1. What is the general consensus on a good resting heart rate? Mine is now anywhere from 64-74.

2. When up walking around the house, doing chores what is considered a good heart rate? I haven't really tested this after any long length of chore activity, I have stairs in my house and hauling down a load of laundry, folding and hauling another back up results in HR 101-104.

3. How will being on a bb affects my exercise? I have a recumbent bike and should have a rowing machine by tomorrow, so do I or should I work harder to get my HR into the cardio range 135-150 that is recommended?

Lastly, I was put on Klonopin, before the POTs dx. It started as 2mg dose then moved down to a 1mg dose that I took half in the morning half at night. I then cut the dose to 1/4 of the 1mg tablet in the morning and 1/4 at night. I have now, 4 days ago, cut out the night dose. I have noticed in the evening I now get headaches and this "flight/fight" response without high heart rate and slight nausea, could this just be from withdrawing the evening dose or more POTs related?

[corina]

Hi Clash! I think it's pretty difficult for us to answer your questions esp as we are all so different. Would it be possible for you to telephone your doctor's office and ask if it's possible for you to email them your questions and your doctor answer them? I think we can just answer what goes for us personally.Also, what goes for one doesn't necessarily go for others. Sorry I wish things would be easier!!!

[Clash0501]

Sorry, I have emailed the nurse and I am waiting for her reply. I know he said I should exercise just wasn't sure what I should try to achieve with it. The resting heart rate questions were not really in relation to someone with POTs but in general. I read anywhere from 60-100 for RHR but that seems like such a large range. And can't seem to find normal HR in relation to light activity.

Thanks for the advice.

[Chaos]

As Corina said, we are all different so we'll probably all have different experiences to report. Personally on the nadalol, my resting HR typically runs around 63. If I've overdone things the day before, it'll drop into the low 50's the next day. If I'm coming down with a virus it'll be in the 70's.

As far as stairs, when I haul a load of laundry up, on a good day it'll stay between 100-110. On a bad day, even with the nadalol it'll still go up to 120-160.

On both the propanalol and the nadalol, I've found that there was just a matter of fine tuning the med to get to a level where it felt like it controlled the excess HR most of the time, but didn't keep it so controlled that when I exercised I didn't get an appropriate rise in HR. So for example, sometimes it was a matter of changing the dose slightly or even changing when I took the dose so that I could exercise and get an adequate HR response to the cardiac exercise. All that fine tuning of the meds was done by my doc(s) when I would ask him or report my symptoms. All my POTS docs seemed to think I should get a "normal" cardiac work out when I exercised.

Don't have any experience with Klonipin so don't have any insight into what you're experiencing with that, although I have read several members' accounts on here of trying to get off it and some of them had quite a time of it.

[Clash0501]

Thanks Chaos. I find that my heart rate is starting to come back to normal faster after exercise, so I guess that is a plus. I'm just going to have to go over all of it with the Doc I guess. I am having trouble getting my heart rate up during recumbent bike exercise, I warm up for a few minutes then go to intermittent lower and higher levels then do a few minutes of cool down. The total time is 20 minutes, but I'm having trouble getting to the 135-150 range, so I'll ask about tweaking my dose.

I was given the Klonopin when the GP thought I was dealing with anxiety, and well I was, every time my heart rate would shoot up, I would get really anxious!! The EP said I should wean really slow so that is what I am trying to do.

[Aeris5000]

Clash, I saw my EP yesterday, too, and I pretty much bombarded him with similar questions. You and I seem to have a similar POTS presentation, as my EP told me that after lookiing at my tilt table results again, I have the "classic" presentation, which I believe means it is very common. I'll try to see how I can help compared to what I asked my doctor:

1. He didn't say what a good resting HR is, but my EKG came back with 90 bpm which he said was a little high. But I told him I was nervous going in. IMO, between 60-80 bpm is probably preferred.

2. I didn't ask him this particular question yesterday, but from what I've gathered between my EP and Neuro in the last 18 months is that, as long as you feel okay, HR shouldn't really matter. As long as it's within reason. For example, maybe not as high as 160 in the shower, but if it's 130 in the shower and you don't feel symptomatic, don't worry about it.

Clash, your HR of 101-104 while carrying laundry is enviable. My hubby, who does not have POTS, has a standing HR of 95, so to add on some activity to that, he'd probably be over 110.

3. Regarding BB, I am currently taking 12.5 mg of atenolol at night. I get conflicting advice as my neuro wanted me to double it to 25, perhaps 50 mg., while my EP prefers 12.5 mg or none at all. I told him I'd been through cardiac rehab where my HR was kept under 155 bpm and I told him I bought a semi-recumbent bike last spring which gets my HR only up to 140 if I really push it. I told him I really miss my dance workout, but don't want my HR at 190. He said if I wanted, I can take 25 mg atenolol the night before, if I plan to workout on my feet the next day. Otherwise, don't permanently switch to 25 mg daily, as he does not think increased side effects from is worth it. As for HR, he wasn't concerned on it being within a range, he just wanted me to do what I can. He sees a lot of POTS patients that are VERY ill, some that cannot even stand. He's not worried about me at all, which I appreciate being as I do feel very fortunate. For the record, I tried getting some HR figures from the cardiac rehab team when I was there, but they went strictly by the age/Max HR chart.

Good luck to you, Clash - let us know what you find out!

[dkd]

I've wondered all of those things also but never got straight answers.

I also recumbent bike and my HR never goes above 100 (on beta blocker). So, I wonder if it's even doing me any good. The other night I felt kind of sweaty and weird after bringing laundry up from the basement and HR was 111. It really doesn't get much higher than that, but I don't do anything much more strenuous than that-lol.

[Clash0501]

Aeris5000, thanks so much for your response. The response email I received basically said the same thing. I can play with the dose to achieve a workout. He actually px'ed me a higher dose than I take but he said as long as I wasn't feeling symptomatic I could stay at the current dose or adjust as needed. As for RHR he said that mine was good since starting the nadolol, but had been a little high throughout the medical history he had researched on me. Since it is early on in taking nadolol he said to contact him with any changes. My GP has basically said the same as your neuro and EP or what you had gathered, that as long as you aren't having symptoms the heart rate is not extreme then he isn't concerned.

dkd, I know what you mean about the heart rate when using the bike, I can get my heart rate above 100, but it only gets in the 135-150 range for a few minutes and only when I am doing the more strenuous hills and I am just not at a point yet where I can stay at that level, not really due to any symptoms, it just makes my legs and especially my knees burn and ache so bad. Ha I am defo out of shape but I guess I will just keep working at it.

My new icky thing is night sweats, right around the neck and head area...ughhh.. I don't know if this is POTs or one of the meds I'm on as I have read that bb can cause night sweats.