Sotolol NEXT

Because the Bisoprolol seemed quite effective at stopping the SVT and Inappropriate Sinus Tach, but caused some ugly side effects, the EP is wanting to try a low dose 40mg Sotolol next. Will see what happens. Follow up with current EP on April 11th, Natale on the 29th. Have not heard back yet about the genetic testing results. How did Sotolol treat all of you?

Meg

It was okay for me, but it's a beta blocker so it came with the same side effect they all have for me, which is exercise intolerance. But it was fairly effective at taming my afib and flutter. If you don't hate beta blockers, it will probably be okay for you.

For me Sotalol included mandatory hospital stay for onboarding and dangerous conversion pauses (I was told not to drive.) I had less episodes w/o Sotalol than with. Everyone is different. Good luck.

Same as others posted. I was on Sotalol for 5.5 years. During that time my afib episodes were limited to one per year. One year I had two episodes. After the 5 years I started to have increasing episodes. Once I had the ablation I was taken off. Only side effect I noticed was fatigue. However, the fatigue was not so bad that it kept me from doing things.

I am presently on 80mg twice a day. Been on it for 2 years except for a 4 month period after my pace maker install where I was on amiodarone.
amiodarone is a disgusting med so I went off it and back on the Sotalol. I go into AFib 5 or 6 times a week always at night or early morning and the sotalol keeps the heart rate lower, I stay in A Fib for only 1 hour at a time. I do have fatigue but still walk 4 km a day. Sotalol seems to affect my sleep also.....just waiting for an Ablation now scheduled for between this May and August.

So I am curious about the GOAL for medication management of arrhythmia. I have tried so many meds. None seem to either work, or they cause too many side effects. I am currently just starting on Sotolol. So far, it has helped with the inappropriate sinus tachycardia, which is obviously better for my heart. It is doing nothing yet, though, for the SVT/Atrial Tachycardia/Bigeminy. The trouble that I have is that the beta blockers slow down my rate, but because I still have bigeminy and blocked PACs, I end up having pauses that are too long and are symptomatic. So, basically, I can't win for losing. It is better, bit still so symptomatic. So at what point do I accept 'better' but still symptomatic as an acceptable place to live, vs. Another potential failed ablation or pacemaker? Rhetorical question, bit one that is on my mind....

The goal of many medical procedures is to make you more comfortable, and to extend your life. Doctors and nurses spend a lot of time asking their patients how they feel, what doesn't feel right, what hurts,...? They can often ameliorate those symptoms and reduce anxiety and make people calmer and sleep better...win/win/win. The stress response that comes as a result of injury, whether real or perceived, begets other problems if the response does not abate after a few days or weeks at most. For example, the immune system is adversely affected after weeks of high levels of stress arousal. I don't know anyone who would call that a salutary development.

If medication has few other problems, and can help a lot, then that is often the first course of action. Many of us do fine for years with just metoprolol and some apixaban or equivalent. It most often doesn't last forever as the disorder tends to progress. It just so happens that, while metoprolol can really keep the lid on rapid heart rates during paroxysmal or persistent AF, which helps with symptoms, which keeps people out of the ER, it can also cause those horrible pauses and bradycardia, sometimes quite dangerously low rates. When the next course of action is another experiment at medication, or an ablation, or a pacemaker, I would think the doctors would urge us to try another medication, or submit to an ablative procedure. In fact, it was my Go-to right off the bat once I read up and understood what it could do for me. I hated the drugs, and they eventually put me into bradycardia and long pauses...eight seconds or more.

I have forgotten, Megan, how many ablations you have had. Was at least one done by Natale? Do you recall any of his parting words, worries....?

I would love to be in a position to urge you to give it one more try, but if you are upwards of four or five by now, especially if the last two were by Natale, it might be time to consider other option. But he would probably like an opportunity to at least consider your case one more time, and maybe offer some good advice.

Thank you, Gloaming, for the quick response!! I have actually only had one ablation, and two attempted ablations (unable to induce rhythm) and none by Natale. I have an appointment this next week with my regular EP And another appt on the 29th with Natale. This will be my first time meeting Dr Natale. My last failed attempt at ablation was without sedation and caused a terrible case of epicarditis. I have had one ablation for SVT that also induced flutter and afib. I have a super high burden of PACs and atrial tachycardia.

From my experience and talking with many doctors over the last 4 years. The approach for managing arrhythmias has been to control heart rate and then work on rhythm. With ultimate GOAL of increasing quality of life.

After my first trip to the ER in 2020 started with a medication drip to get my heart rate down, starting on Metoprolol, and Eliquis. To get me to a point, they could do a cardioversion. They performed the cardioversion about 10 days later and increased my Metoprolol to 100mg x2 daily. While the cardioversion was successful, the Metoprolol was horrible for me. They wouldn't change it to anything else or consider any other options. Eventually AFIB returned with loss of both rate control and rhythm.

I went on the search for a new medical team and got this:

My last cardiologist stopped at seeing my heart rate under 90 at one visit. Straight up, told me I was good and not much more could be done. But she did refer me to an EP, with a look of not much hope for it. Although we did change the approach from a single medicine to multiple medications, that did somewhat help.

My EP was stunned when I walked into his office with my heart rate at 115bpm and still in AFIB with PACs etc. He had been told I was in AFIB, but stable under 90bpm. He initially thought it was just the walk in from the parking lot that caused it, I had to tell him I was like that for about a week and keep reminding him it had been like that. We scheduled the ablation that appointment.

Sept 6 2023 I had my first ablation that lasted almost 4 days before I returned to AFIB etc. We in increased my medications and did a cardioversion a few weeks later when it was obvious that I would convert on my own. My heart rate at the time was around 83bpm and, looking like I might return to sinus rhythm, this was the reason for the wait.

Since then, I have had about 2–3 months with AFIB and PACs, settling down to just PACs now. My quality of life has finally improved to the point I feel mostly like my self. While I am still on medications and do have side effects from them, I am in a much better position then when I started to take control of a problem that was minor in my life and multiple doctors over the years convinced me it was nothing, Just anxiety or maybe a bad meal to anything else they could blame.

While I did take pauses in dealing with this, I kept moving forward to find a solution that would eventually get me to a point that I felt good.

My thought is to maybe try to find the 1 or 2 medicines that work and then try to work out the side effects. Getting to a point that it is comfortable to wait for the next ablation and build back up your strength and reserves for that. Find a group near you to talk to once or twice a week, or just post out your frustrations here. Getting some kind of support group will help immensely while you wait for your next step in the process. I took many steps and rethinking them over the years to get to a point that I am now at least comfortable even if I can not do everything I used to be able to do.

This disease/condition takes a toll on your life in so many ways. From the health aspect, to the mental side, and how you interact with others. Find something that works at least a little and build from that if you need to. I have given up at points, but I eventually got back up and kept fighting.

I am hoping for the best for you! If you get too frustrated, post your heart's content out. Someone here will try to give you the support you need.

I truly appreciate the wealth of experience, knowledge, and compassion on this forum!! I think that my biggest frustration with the meds has been the general lack of efficacy. I have only had two medications of the many tried that have effectively stopped the arrhythmia. One of them (Flecainide) left me so agitated and anxious that it wasn't worth it. The other, recently Bisoprolol, was too strong. I am going to look into getting it compounded at a pharmacy to support a lower dose. I just despise the side effects of most of them, and because my arrhythmia primarily affects my sleep, I need the medication to improve that for it to be worth it for me. Bisoprolol was the first med that helped me sleep. My individual challenge is that most of my symptoms are in the evening and night, and the meds obviously affect my heart rate and BP during the day as well. What stops the tachycardia and SVT at night often causes bradycardia and low BP during the day. I have often thought, though, about what is the most tolerable med for the interim, until I can make a larger management plan.

That is exactly what my EP asked me the last time we met. He asked what med was the best tolerated, despite still having side effects. The Bisoprolol was the only one that actually worked. It was just too strong. Tomorrow I will see if the pharmacy can compound it, I will see my EP on Thursday, and go from there. Ultimately, I would love to have an EP that could do an ablation at night to catch the rhythm, or be confident enough from the ECG to do an ablation without inducing the rhythm. I know that ablation isn't a magic bullet, but it is much preferred to years of ineffective meds with many side effects.

I appreciate all of the thoughtful responses. I will keep on trucking and trying to find the best path forward! Thanks to all!



Edited 2 time(s). Last edit at 04/07/2024 11:24PM by MeganMN.

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MeganMN
The other, recently Bisoprolol, was too strong. I am going to look into getting it compounded at a pharmacy

What about cutting the tablet? I just googled whether it was safe to cut and apparently it is. We've discussed here about some excellent pill cutters that give you a very accurate cut. For instance, some here cut the 5 mg Eliquis tablet in half if they have been prescribed 2.5 mg, as the 2.5 mg tablet and the 5 cost the same. Many EPs are fine with cutting the tablet as it makes it much more affordable. Have you tried cutting Bisoprolol?

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MeganMN
I think that my biggest frustration with the meds has been the general lack of efficacy.

This was my problem for the longest time. Most of the medications didn't really work well for me, or the side effects were so bad that AFIB was almost better. Some worked to lower heart rate, some would lower BP, some seemingly made it all worse and that is how it wound up on the regime that I take now.

I had to have a talk with my doctor to work out a plan to get the point, it would work. We started at the lowest dosage of any new medication and worked up to the point we got the best results. Then added the next one to work on what was left. I never achieved NSR that lasted until the ablation, and still had to adjust medications after that. My resting heart rate floated between 95 and 115 most of that time.

The next step is to wait a bit and work out the other issues in my life, while planning a way to get off the medications. I will follow the plan that was outlined here with the assistance of the other members. But I have to take care of a few things first.

Daisy,
Thanks for the message. I was having to split it into quarters and it was literally just a tiny little grain, and I still needed a lower dose! I am hoping a compounding pharmacy might be able to make some that are a more consistent dose. I probably need a 1.25 or even less. We will see!!

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Daisy

The other, recently Bisoprolol, was too strong. I am going to look into getting it compounded at a pharmacy


What about cutting the tablet? I just googled whether it was safe to cut and apparently it is. We've discussed here about some excellent pill cutters that give you a very accurate cut. For instance, some here cut the 5 mg Eliquis tablet in half if they have been prescribed 2.5 mg, as the 2.5 mg tablet and the 5 cost the same. Many EPs are fine with cutting the tablet as it makes it much more affordable. Have you tried cutting Bisoprolol?

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MeganMN
I was having to split it into quarters and it was literally just a tiny little grain, and I still needed a lower dose! I am hoping a compounding pharmacy might be able to make some that are a more consistent dose. I probably need a 1.25 or even less. We will see!!

Don't know if some form of this would work. My wife takes 3 mg low dose naltrexone (LDN). We self-compound, which is much cheaper, especially since insurance won't cover LDN. Naltrexone normally comes in 50 mg pills that will dissolve in water (& is used for a completely different purpose). I put 50 mg (which is also 50 mL) of water in a jar with the pill. It dissolves and she shakes it up. Then she uses a 3 mL dosing syringe to get her 3 mg daily dose. You could also use a mortar and pestle to crush a pill into powder and do the same thing.

I thought about trying this. I might give it a try. My EP was encouraged because it was actually working!! So I can certainly try.

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GeorgeN

Don't know if some form of this would work. My wife takes 3 mg low dose naltrexone (LDN). We self-compound, which is much cheaper, especially since insurance won't cover LDN. Naltrexone normally comes in 50 mg pills that will dissolve in water (& is used for a completely different purpose). I put 50 mg (which is also 50 mL) of water in a jar with the pill. It dissolves and she shakes it up. Then she uses a 3 mL dosing syringe to get her 3 mg daily dose. You could also use a mortar and pestle to crush a pill into powder and do the same thing.

I also self compound naltrexone to take only 4 mg. This method was approved by my doctor. The medication just has to be water soluble. I use distilled water and keep the solution in the fridge. Before this I used a solution compounded by a pharmacy and I honestly can’t tell any difference except the price!

The pharmacy cannot compound it. I am going to talk with the nurse today and see if I can try one of these methods. It s certainly worth a shot!.

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MeganMN
The pharmacy cannot compound it.

Did you just ask your local pharmacy or did you find a compounding pharmacy and ask them? Only compounding pharmacies can do that.

I asked the closest compounding pharmacy that I had previously gotten low dose Naltrexone from. They couldnt do it.

Okay, next complication. Asthma. I had to use my inhaler.many times today (I have adult.onset asthma after influenza five years ago). I rarely use it. But should I even be taking Sotolol? I feel like maybe not....

I can't answer from experience, but if the literature sez there's no history of contraindications, then I think you should stay the course. You're already cutting the dosage to a new low, so I feel you should be okay for a single dose to see if you tolerate them well together. Then, a second dose, and then a third...you will be able to heave a sigh of relief.

There are contraindications. Asthma + beta blockers is often a bad idea because the BBs can exacerbate the asthma. Have you actually started the sotalol? When did you start it?

Carey, I started the Sotolol on Friday and have had exactly NO CHANGE in my arrhythmia status, except the added asthma. I took it for four days and have had no effect on heart rate or rhythm. I see my regular EP tomorrow and will ask about maybe self-compounding the bisoprolol until we can sort out a better plan and/or I have my consult with Natale.

Yeah, if sotalol was going to help it should have done so by now, and I'd say it looks pretty suspicious as a prime suspect in your asthma. For sure talk to your EP tomorrow, but if I were you I'd probably stop it immediately. It seems to be doing more harm than good.

Have you tried Renexa/Ranolzaine? There is some evidence that this drug helps with arrythmia's. Several articles in the forum and on the internet for this off label use. It does not affect heart rate or BP however..