Tried to go off my beta blocker and it didn't work

[yogini]

My POTS doctor has been pushing me for a year to go off of my beta blocker. I used to take 1.5 per day, and it took me MANY months to get down to 0.5 pill per day. I would have a flare up each time I went down in dose, and then a couple of months later I would start to feel better. I've been doing very well for the past couple of months, so I finally decided to try and stop the beta blocker.

Well, it didn't work AT ALL. My resting HR went up a lot and when I started walking, forget it! This went beyond a flare up - I just felt awful and could barely be on my feet for more than a few minutes. I tried to grin and bear it for as long as I could, but yesterday I just couldn't take it anymore and broke down and took the med. I talked it over with my cardio (who is different than my POTS doctor) and he thinks I need to be on the beta blocker.

I am REALLY bummed that I am still stuck taking the beta blocker. I am coming up on two years of having POTS and I was really hoping to be med free by my anniversary. I am also MAD at my POTS doctor, because he has been telling me that I am fine. I have been feeling guilty and wondering whether I really even have POTS anymore and whether I am using the medicine as a crutch. Well I guess this proves that I DO still have POTS and that I really do need the medicine.

I guess should not be complaining, because at least I am fairly functional on the medicine compared to most. And I am lucky that I only need a very small dose these days. I know many of you are still looking for the right combination and my heart goes out to you.

-Rita

[michiganjan]

Rita,

I have been on a beta blocker for many years. I took Coregard for at least 10 years, then went off and had a couple of years when I did not take a beta blocker, and my POTS was maybe a little better, but I still had the high heart rates upon standing. I decided I was better off on the BB and started Sectral and have been on it at least 9 years at this point.

So long-term beta blocker use is doable. I now believe I will stay on this one the rest of my life, as I have tried many different ones and Sectral is the only one that I tolerate.

If a beta blocker works well for you, why are you trying to get off it? Beta blockers have been around for many years. They can be heart protective, taken long term.

I have asthma, usually a condition that means one should not take beta blockers. However, I need that beta blocker and I also take daily meds for allergies/asthma, and the allergies are not much of a problem.

[Ernie]

Hi,

I would lke to be med free one day but I don't think I will be able to make it. If you need to take medication to function then that be it. There is only so much we can do by ourselves.

[yogini]

Thanks for your replies.

Jan, I agree that beta blocker use in the long term is pretty safe. And I am on a really low dose. I tried to go off the med because my dr suggested it and because I had improved. I was planning to take it only as needed. Two of my biggest problems, exercise intolerance and fatigue, and a lesser problem, weight gain, are also side effects of the beta blocker. I was hoping that going off of it would help with these things, but no such luck.

I am glad I was able to lower my dose last year and I may try again in another 6 months to wean off of it. Although if I have any doubt I won't hesitate to keep taking it...and not feel guilty.

Ernie, you are so right!

[AJVDK]

Rita,

I would also love to be med free, but the bottom line is I need my meds. Don't worry about being on the meds. When the time is right try it again. I also would try to talk to your doctor about your POTS and that you are still not always feeling good.

Hope everything works out for you!

[Jacquie802]

Hi Rita,

Not the apptmt I had with my cardio Monday, but the one before that he felt as though I didn't need the Toprol, so he said that if I wanted to try to get off of it I could. I take Toprol XL 25mg, so I went down to half a pill and boy did I feel a difference. I went to see my cardio Monday and I told him what happened. He decided that he first wants to get me at a dose of Florinef that works for me, then when I go to see him in April, we are going to work on getting me off the Toprol. He did say that it can be harder getting off of Toprol because we develop some dependance on it. So who knows?! I personally think I may be better off not going off of it since it has helped me out a great deal...but then like you say I would like to be med free, but I also don't think that is going to be happening anytime soon. I think it's worth a try though. If the BB makes you feel good and functional why bother not taking it? I say whatever works, stick with it!

Jacquie

[janineerrn]

Hi,

I love my beta blocker, I cant function with out it. I would love to cut down on the meds I take but I realized that is pretty unrealistic for my condition. Im just glad to have a med that works!!!

Peace

Janine

[DancingLight]

Rita,

I think it's so hard to quiet those voices when docs say stuff like that...

I treid to go off my bb two or three times b/c the docs thought I would be fine (hahaha) and each time was a disaster. I relapsed so badly and had incredible withdrawal symptoms. Even when I weaned carefully and slowly (the first time they told me just to stop it cold turkey and I wasn't smart enough to know better!) I was miserable and the tacy was horrible.

I have neer been very functional, as you know, but when I do have a little bit of feeling better I start to think I am just making it up. But, all I would have to do was stop a med or overdo a little and would realize, oops, yup, I am sick. (Now, I don't need convincing that I am sick! haha!)

I'm sorry that you can't be med free...as that is certainly a good feeling...but I am grateful that you have somethig that works for you. Next time the docs give you an attitude...remember that you are functioning b/c of this med and that you DO have POTS! It's not in your head, but they are sure good at convincing us it is!

I hope you will get back to feeling better once the bb is regulated in your system.

Emily

[d4g7]

I've been on a high dose of Propranalol (Inderil) for a long time now (320 mg/day), I don't like to have to constantly take tablets throughout the day - and have tried to lessen the dosage by one tablet a day (down to 280 mg/day), but my body reacts immediatley, and I have tachy as soon as I miss a dose. My docs are considering increasing my dose to 400 mg/day, but I really don't want to do it.

But even with this high dose, my resting PR is still over 100 bpm - at the moment it's about 106 bpm, and I've been sitting at my desk for over an hour - it really should be lower than this. But to date, nothing has been able to slow it down to a comfortable level.

On the other hand, I have had days where I feel that I am almost poisoned by the BB's, especially on weekends, when I am not doing much - I feel really groggy, and end up the next day feeling as sick as a dog. It may not be the BB's, but I find if on those days, where I wake up ill (like a Sunday), if I miss my first dose of Propranalol, I feel better. I often wonder if it is like a small OD? I'm seeing the doc next week - and ask if I should maybe reduce my dosage on weekends, or days were I am not doing too much.

[mom4cem]

Hi,

You can have a rebound effect of tachycardia when you stop beta blockers. It can take some time for your body to adjust though if your heart rate is really high and makes you feel uncomfortable you may not be able to drop it yet.

I take 12.5-twice a day. I have moved the time that I take my a.m. dose until late in the a.m. It was an experiment to see how long I could go until my next dose. The first few days my resting rate was up,up,up. Over a few days it was up in the a.m. but after about an hour or so it started to settle down. Now I have been at this point for about two weeks and I can make it to abou 11.00 a.m. every day until I take the med.

I make sure I drink water as soon as I get up in the a.m.,,while sitting in bed and keep drinking as much as I can. I find that once I take the beta blocker I don't drink as much because my heart rate goes down and I feel o.k., it is like the reminder that I need to drink is gone.

Don't feel bad if you need to continue to take it. It is a small dose and keeps you functional and comfortable.

[michiganjan]

Rita, remember that exercise intolerance and fatigue are also common with dysautonomia/POTS. I guess the question is if the OI and fatigue are worse with or without the beta blocker.

Also there are many kinds of beta blockers and there are 2 different classes of beta blockers. I have had to experiment with many different ones to find the one with the least side effects.

[yogini]

Thank you everyone for your replies. You really did make me feel a lot better, and it is great that so many of you understand.

Mom4cem, you are right about the rebound tachycardia. I did a google search and found mentions of it on NIH and Cleveland Clinic websites. That could definitely be what I was having and I am surprised that my cardiologist didn't mention it, because I specifically asked him about that. Right now I am too scarred from my experience to try any med changes for a while. I think I will try again in a few months and, next time, take a couple of weeks off so that I do not have to be at work during the rebound (if that's what it is).

Jan, you are right that the symptoms could be from POTS or the beta blocker. They are probably mostly from POTS, but I always wondered whether the BB contributes to things. I think the atenolol has worked pretty well, so I think will keep taking my teeny dose and hope that things keep slowly improving or at least stay the same.

[yogini]

Thank you everyone for your replies. You really did make me feel a lot better, and it is great that so many of you understand.

Mom4cem, you are right about the rebound tachycardia. I did a google search and found mentions of it on NIH and Cleveland Clinic websites. That could definitely be what I was having and I am surprised that my cardiologist didn't mention it, because I specifically asked him about that. Right now I am too scarred from my experience to try any med changes for a while. I think I will try again in a few months and, next time, take a couple of weeks off so that I do not have to be at work during the rebound (if that's what it is).

Jan, you are right that the symptoms could be from POTS or the beta blocker. They are probably mostly from POTS, but I always wondered whether the BB contributes to things. I think the atenolol has worked pretty well, so I think will keep taking my teeny dose and hope that things keep slowly improving or at least stay the same.