Success with Verapamil (at least once!).

[Remy]

I took 40 mg of verapamil about an hour before my walk this morning...and it helped! Quite a lot actually.

I wore my chest strap to keep track of my HR and HRV and both measures were significantly improved over baseline. Typically when hiking my HR will average 125-135 and will spike up above 150 during hard exertion. This is in contrast to my aging parents who will be at or below 100 during the same experience.

Today my HR averaged 100-110 and only spiked up to 155 after 3 flights of stairs. I sat down on a bench at the top and it came back down within just a few minutes whereas normally it would have taken at least 5.

That's a significant difference. And I feel pretty good overall...much less tired than I would normally be after such a walk.

My HRV (rMSSD) usually tanks when I start walking too and today it stayed around 55. Normally it would drop down into the teens or 20s.

So I think I'll stick with it for a while! The trick for me will be finding a dose that doesn't drop my HR too low in the evening when I'm mostly at rest.

 

[Who Me?]

is it affecting your BP at all?

 

[IrisRV]

The trick for me will be finding a dose that doesn't drop my HR too low in the evening when I'm mostly at rest.

Is this at all reassuring?

Verapamil exerts antihypertensive effects by decreasing systemic vascular resistance, usually without orthostatic decreases in blood pressure or reflex tachycardia; bradycardia (rate less than 50 beats/min) is uncommon (1.4%).

my bolding

You might be able to use the peak time and half-life to your advantage. Peak plasma level occurs at 1-2 hrs after you take it. Half-life seems harder to figure. For single doses, the half-life is 2.8 - 7.4 hrs. The half-life is longer when administered at 120mg every 6 hrs -- 4.5 - 12 hrs. It looks like the longer half-lives occur in the elderly.

So, if you only take it in the morning and mid-day, a lot of it would be out of your system by evening. If you're taking 40 mg instead of the more standard 120 mg, I imagine the verapamil wouldn't be having much effect by evening if you don't take an evening dose.

 

[IrisRV]

Typically when hiking my HR will average 125-135 and will spike up above 150 during hard exertion. This is in contrast to my aging parents who will be at or below 100 during the same experience.

Today my HR averaged 100-110 and only spiked up to 155 after 3 flights of stairs.

Yeeks! Do you know your AT? Those HRs would be well above the AT of most PWME. Not all, of course.

That said, for the first 5-6 years of ME, my HR was 125 just standing, and sometimes it was that high just sitting, so I'm a fine one to talk. Now, I felt like utter crap at the time, so I'm not suggesting this was good.

 

[Remy]

Yeeks! Do you know your AT? Those HRs would be well above the AT of most PWME. Not all, of course.

That said, for the first 5-6 years of ME, my HR was 125 just standing, and sometimes it was that high just sitting, so I'm a fine one to talk. Now, I felt like utter crap at the time, so I'm not suggesting this was good.

I think my AT must be around 140-150 based on the 220-my age formula and when things get labored for me and I check my HR while wearing my chest strap. So I try to keep myself at 125 max...

But my real determination is how I feel during, right after and in the next few days. That type of exertion doesn't typically cause me any PEM (right now) so as long as I feel OK after, I figure I may as well carry on because it makes me so happy to go for walks with the dogs.

Yesterday afternoon my HR was higher than normal though. I figure I got a little rebound when the verapamil wore off. It was more like 80 for the rest of the afternoon which is quite a bit higher than my normal 65-70 just sitting around. I wonder if that will abate as I get used to it?

 

[IrisRV]

I think my AT must be around 140-150 based on the 220-my age formula...

Ah. You're a lot younger than I thought you were. Wise for your age, I guess.

That type of exertion doesn't typically cause me any PEM (right now) so as long as I feel OK after, I figure I may as well carry on because it makes me so happy to go for walks with the dogs.

Can't argue with that. I'd do it too, if it didn't PEM me. What does it take to PEM you? I know we're all different. I've heard some high level athletes don't PEM until they're doing what would be hard work for an ordinary person. It's still PEM.

Yesterday afternoon my HR was higher than normal though. I figure I got a little rebound when the verapamil wore off. It was more like 80 for the rest of the afternoon which is quite a bit higher than my normal 65-70 just sitting around. I wonder if that will abate as I get used to it?

Keep us posted. If it turns out to have more benefits to PWME than just as a tachy med, we'll want to know as much as possible about the ways different people respond to it.

 

[Remy]

What does it take to PEM you?

It's hard to say. Like, I don't run but that is because my legs feel heavy and I get dizzy. So I have no idea if running would provoke PEM. Probably. I've always been a crap runner.

Walking doesn't seem to provoke PEM. Nor does yoga or Pilates type exercises.

Traveling, like when we were going to look at houses in MI or to Dr Lerner would occasionally put me down but usually just for a day or two.

Emotional stress is as likely to provoke PEM as anything physical, honestly.

Weird.

Yesterday and today weren't as successful with the verapamil. I just went for the morning stroll with the doggies and my HR was up near 130 and my HRV was down in the 20s again. It was pretty similar yesterday too. So now I'm not sure if the success the first day was just that I was fresh and had quite a bit of reserves in the tank or if it was the med.

Another possibility is that I need to up my dose and take 40 mg two or three times a day. I'm just very worried about dropping my HR too low in the evening.

More experimenting to be done!

 

[IrisRV]

Walking doesn't seem to provoke PEM. Nor does yoga or Pilates type exercises.

Traveling, like when we were going to look at houses in MI or to Dr Lerner would occasionally put me down but usually just for a day or two.

Emotional stress is as likely to provoke PEM as anything physical, honestly.

Weird.

Weird indeed. There's so many similarities and yet so much variation among us. I wonder if it will turn out to me something as simple as one person has very few (or very poorly functioning) mitochondria, while others among us have more (or better functioning) mitochondria, but still not enough to function normally. It sounds like you have a moderate amount of aerobic capacity, so you can do some mild higher-energy-requirement activities, but perhaps not sustained activity.

But then, what does emotional stress have to do with mitochondria? Probably nothing. Yet, we all know emotional stress has an impact on health for many of us. Poorly functioning stress response? Is it an entirely different disorder coincident with a mitochondrial disorder? Or an entirely different illness period? Are they multiple facets of the same root problem? Who knows? It's interesting to speculate, but we really have no idea until more research comes in.

Yesterday and today weren't as successful with the verapamil. I just went for the morning stroll with the doggies and my HR was up near 130 and my HRV was down in the 20s again. It was pretty similar yesterday too. So now I'm not sure if the success the first day was just that I was fresh and had quite a bit of reserves in the tank or if it was the med.

Another possibility is that I need to up my dose and take 40 mg two or three times a day. I'm just very worried about dropping my HR too low in the evening.

More experimenting to be done!

So maybe not the verapamil. I have a vague memory of being told that I needed to take it consistently for a few weeks to see the full effect. However, that may have been for me specifically, rather than a property of the medication. Might be worth looking into.

You're one of our primo experimenters. I just took 40 mg 3x daily as I was told. It worked for me, so I didn't mess with it on the "If it works, don't fix it" principle. You'll be getting a lot more information trying different doses and different times of day. Please continue to keep us posted on what you tried and what the effect was. The more info the better.

 

[Gay Clarke]

Any more to report?

I too am trying to determine a safe zone. I would never get out of bed if I started at 100. I decided on 130 based on what worked 10 years ago but forgot to adjust for age so I am working under 122 now. I am thinking maybe the success rate could be related to the extremes (or not) of the activity, eg close or past AT?

 

[Remy]

Any more to report?

I too am trying to determine a safe zone. I would never get out of bed if I started at 100. I decided on 130 based on what worked 10 years ago but forgot to adjust for age so I am working under 122 now. I am thinking maybe the success rate could be related to the extremes (or not) of the activity, eg close or past AT?

No, I ended up having to drop it for a while to do a course of diflucan. And then I got all excited about gastrocrom and ibudilast and never got back to verapamil. I need to put it back on the list though. I'm still curious if a larger dose would help me have more stamina.

 

[Gay Clarke]

I am going to ask the doc for it I think. I hope you get chance to try it sometime.