Metoprolol inconsistent

[Clueingforlooks]

Hi everyone, 

I used to take propranolol and flecainide. But my cardiologist wanted to take me off and try ivabradine which was a disaster. Was extremely sleepy and overstimulated. 
Now on metoprolol as I can’t tolerate propranolol anymore for some reason.

On Metoprolol sometimes I have a week of feeling really stable but then all of a sudden my adrenaline comes back and gets stuck for weeks. 
It’s frustrating as I like the metoprolol but it’s pretty inconsistent and I’m exhausted when it’s not working. I’ve tried upping dose but doesn’t make much difference. 
I’ve also tried most other betas but they aren’t as helpful. 
Don’t know what else I can take to stop this happening as the flecainide used to help with my adrenaline as well. 
 

current meds

Fludrocortisone

metoprolol

pantoprazole 

[Sushi]

On 2/5/2022 at 9:43 PM, Clueingforlooks said:

Don’t know what else I can take to stop this happening as the flecainide used to help with my adrenaline as well. 

Did your doctor explain why they took you off flecainide? It is an antiarrythmic medication—I take if to prevent Afib.

[Clueingforlooks]

5 hours ago, Sushi said:

Did your doctor explain why they took you off flecainide? It is an antiarrythmic medication—I take if to prevent Afib.

I've been taking it for SVTs and a lot of PVCs. When I first started on it I noticed it helped the hyperadrenergic part of my pots significantly. He took me off it just because he didn't like the risks of the med. I had been on it for over 3 years and never had a problem with it while I was on it. I explained to him it helped my adrenaline a lot but he didn't want to listen. 

[yogini]

I can’t speak to SVTs, which are usually considered separate from dysautonomia.  However if you are experiencing ups and downs as part of dysautonomia it doesn’t mean your medication is failing.  They are a normal part of our condition and no medication can prevent them.  You may want to keep track of your heart rate and blood pressure when your symptoms act up to see if you notice a pattern. 
 

Fludrocortisone has the side effect of anxiety/adrenaline so if you are taking and feeling anxious that is also one thing to explore.

But ultimately if you felt better on another medication combo and your doctor refuses to put you back on it and refuses to listen, thar is concerning.  I would spend a bit of time asking him why.  You could also get a second opinion from another doctor.

 

[MikeO]

14 hours ago, Clueingforlooks said:

flecainide

This drug comes with a black box warning so this may be why your doctor took you off of it.

https://medlineplus.gov/druginfo/meds/a608040.html

 

IMPORTANT WARNING:

In a study of people who had experienced heart attacks within the past 2 years, people who took flecainide were more likely to have another heart attack or to die than people who did not take flecainide. There is not enough information to tell whether taking flecainide also increases the risk of heart attack or death in people who have not had heart attacks within the past 2 years. Because of this serious risk and because flecainide has not been shown to help people with irregular heartbeats to live longer, flecainide should be used only to treat people with life-threatening irregular heartbeats.

Tell you doctor if you have atrial fibrillation or atrial flutter (conditions in which the upper chambers of the heart do not beat effectively). People with atrial fibrillation or atrial flutter who take flecainide may have a higher risk of developing certain types of irregular heartbeats.

Talk to your doctor about the risks of taking flecainide.

[JennKay]

@Clueingforlooks - I was started on metoprolol when my symptoms first presented last summer. My experience sounds similar to yours. At first, the metoprolol made me very tired, but I didn't have any issues with adrenaline surges. After about 2-3 weeks on metoprolol I started getting adrenaline surges, even when I upped the dosing. I elected to stop taking it, which wasn't a fun experience either. The metoprolol helped with my PVCs and PACs, but I think it dropped my BP too low and as a consequence my sympathetic side went into overdrive. I was offered flecainide but after reading the black box warning, and b/c of my experience with metoprolol, was too afraid to try it.

[Clueingforlooks]

On 2/8/2022 at 10:46 PM, yogini said:

I can’t speak to SVTs, which are usually considered separate from dysautonomia.  However if you are experiencing ups and downs as part of dysautonomia it doesn’t mean your medication is failing.  They are a normal part of our condition and no medication can prevent them.  You may want to keep track of your heart rate and blood pressure when your symptoms act up to see if you notice a pattern. 
 

Fludrocortisone has the side effect of anxiety/adrenaline so if you are taking and feeling anxious that is also one thing to explore.

But ultimately if you felt better on another medication combo and your doctor refuses to put you back on it and refuses to listen, thar is concerning.  I would spend a bit of time asking him why.  You could also get a second opinion from another doctor.

 

Thanks for replying, yes my vitals get way more variable when it's like this. Even taking the metoprolol.

[Clueingforlooks]

33 minutes ago, JennKay said:

@Clueingforlooks - I was started on metoprolol when my symptoms first presented last summer. My experience sounds similar to yours. At first, the metoprolol made me very tired, but I didn't have any issues with adrenaline surges. After about 2-3 weeks on metoprolol I started getting adrenaline surges, even when I upped the dosing. I elected to stop taking it, which wasn't a fun experience either. The metoprolol helped with my PVCs and PACs, but I think it dropped my BP too low and as a consequence my sympathetic side went into overdrive. I was offered flecainide but after reading the black box warning, and b/c of my experience with metoprolol, was too afraid to try it.

Sorry to hear, it's very frustrating. Have you tried other beta blockers? 

It does seem the same for me the longer I take them the more the sympathetic side kicks in again to compensate for low BP.

Just don't know what to do to stop that happening as I can tolerate vasoconstrictor like midodrine. And I'm already on fludrocortisone.

When I was initially put on flecainide I was monitored in hospital for a couple of days but they didn't really tell me how bad it could be! But when I found out I still wanted to take because it helped my hyper side a fair bit. It's different for everyone so unfortunately I can say how you'll react to it. But I tolerated it really well and didn't seem to effect my heart rate or BP.

Are you taking or doing anything now to help with adrenaline?

[JennKay]

@Clueingforlooks- yes, I'm still pretty new to all of this so I am learning as I go along. I'm not taking anything at the moment, just trying to stay hydrated, wear compression tights, and walk even if only for 5 mins at a time.

I also tried atenolol, which didn't activate my sympathetic side as much, but it made my hands and feet tingle and also impacted a few other sensations to the point where I was referred to a neurologist for peripheral neuropathy. He swore I was going to be positive for peripheral neuropathy, but thankfully it came back negative. I think the atenolol was responsible b/c after stopping it, the tingling in my hands and feet has almost completely disappeared. I stopped taking atenolol beginning of November and it has only been in the last month that my BP has become less liable. With the beta blockers I could be 90/60 one minute then 115/85 two minutes later. I felt horrible all the time. Now I am usually b/w 105-115/65-70, but I still have the adrenaline issues, particularly when my cycle changes...thanks hormones! Haven't figured out the best way to deal with hormonal changes, but I have the collective wisdom of you all, and I'm sure I'll find good advice in the discussion archive!

Today isn't a fun day b/c I'm at that point in my cycle, but there's always tomorrow, right? At least that is what I tell myself everyday 🙂 Honestly, I can deal with most of the weird symptoms and adrenaline, but it's the ectopics that bother me the most. Again, still to nervous to try flecainide. 

[RecipeForDisaster]

Taurine helped my palpitations and PVCs. I keep getting worse, so it hasn’t kept up, but it definitely helped me.

[MikeO]

When i was taking Metoprolol (extended release) my Dr had me take it at night. it did help with stabilizing my daytime bp's a little bit. Since we have completely changed out my meds. At first i was just on Carvedilol and did not seem to affect my blood pressures much and i did see less spikes in heart rates (sure it was because my bp's were still high)

Since i have added Amlodipine and Ranolazine to my drug list and have been seeing the hr spikes when my blood pressure gets low especially on the diastolic side. What has help some is that i drink a lot of water before bed and have raised the head of the bed 30 degrees. I don't seem to get anymore surges while sleeping.