Calcium channel blockers Patient Views

I haven’t studied the various CCBs to know their different mechanisms of action. And right now the author's cognitive function is low, so I ask your forgiveness in advance... Very recently, the author did a multi-week trial on a custom-compounded low-dose (titrated up to 40mg thrice daily) Verapamil because the author has Hemiplegic Migraines (as well as ME). Suffice it to say, the author's HM worsened precipitously with badly lingering symptoms (severe aphasia, apraxia, dysarthria, ataxia, etc.) in the rare windows between them. The author's ME further worsened as well - and the author was in no position to afford that decline. That’s the very short summary. It may or may not be applicable to this thread or to anyone other than the author. Nonetheless, it’s evident that, if anything, the author would need an agonist rather than antagonist!

I'm on a lot of cardiac medication and went through EECP as well. Probably the most helpful things have been a calcium channel blocker to help calm down the coronary artery spasms, EECP, and soludexide.

Is there anyone on here that has tried calcium channel blockers and noticed any benefits? 15 people in the research group with CFS seems like a small amount to be conclusive that all CFS people will have low cellular calcium levels from a faulty gene but I guess it's the best evidence there is as far as current research goes so I would be interested in giving it a go. There are apparently natural calcium channel blockers, Magnesium and potassium, perhaps that could be of benefit over time rather than taking the medication? I'm in Australia also, I too find it crazy how big the gap is between all the good CFS research and breakthroughs being done in medicine here to the lack of any knowledge and understanding of CFS from most doctors.

Ivabradine honestly doesn't seem like a great candidate here, though it isn't for me to say. It is designed to tank heart rate and that it does. That said, 2.5mg of ivabradine twice daily didn't drop my resting pulse alarmingly, though, but my resting HR is in the mid-high 50s and not the 40s.

I take a half dose of felodipine (2.5mg), and it keeps a lot of BP fluctuations in check. I don't think it affects pulse really at all. The brain penetrant calcium channel blockers also seem to be able to do healthy stuff in our brains like improving blood flow and cleaning out bad proteins, which may be beneficial for ME/CFS. Can't really feel that kind of thing, personally, but I am a fan of both nimodipine and felodipine. Nivaldipine as well.

I probably came close to death from a calcium channel blocker. I was progressively incapable of sleeping and at about the point I figured out why I was down to 42 minutes of sleep a day, broken into five and ten minute naps. It was also getting worse. At some point very low sleep quantity and quality can lead to immune failure and probably a host of other issues. It may or may not be beneficial to block calcium channels in immune cells such as NK cells, but its not clear that other cell types will benefit. This needs much more research, and probably a careful selection as to what types of calcium channel blockers are used.

Don’t assume it’s just histamine. Many LC sufferers have nervous system dysfunction. There are many theories on what causes it. I have / had it too including the nightmares and what appear to be panic attacks though they’re not actually stress or anxiety produced. I’m not fully recovered and still working on many fronts (not just nervous system.) But the treatment that made an almost immediate difference in my heart rate dysfunction was going on a calcium channel blocker. Within a couple weeks, I was able to sleep laying flat again, I was able to sleep again period. My heart didn’t go crazy at the drop of a hat. My blood pressure came back down. It was a huge step forward in becoming functional again. The challenge is finding and getting into a cardiologist who believes you and will prescribe it. It took me two months including two hospital stays and a holter monitor. Good luck on this journey. You’ve sound a great community of support here.

My cardiologist put me on verapamil 120mg ER and it has really helped with my heart rate spikes. I too use the visible app with the armband. Still working on the POTS issues and the PEM, but pulling back on things (hence, more rest) has helped. Godspeed in your ‘journey’