Verapamil - have you tried it and what happened?

[georger]

The evidence for the benefit of verapamil seems quite thin. I understand that it has been proved that the ORAI1 mutation is not affected by verapamil. And yet there are some TAMites who have benefited.

I would like to know who has tried verapamil and what the effect was, good, neutral or bad.

[Craig Lane]

I have been on verapamil for a number of years although only at 120mg as I already have low BP and Dr didn't want me dying or some such excuse. I didn't think it had much affect until I was hospitalised (Asthma attack) and they stopped all my meds. After a few days I could barely walk to the toilet and back and had to be rescued on a number of occasions. So the little I can do is mainly down to verapamil. Maybe I need more stress in my life my BP would go up and they would give me more verapamil and I could do more, but I am grateful for the little I manage.

[leteeters]

I am not sure but I think that I've been tacking Verapamil for maybe three years. I started at 120mg then 240mg and to 480mg over this period of time. I really can not tell much of anything. I told my doc that I didn't think it was doing much he said the only way to tell was to stop taking it. I am back down to 240mg every other day will be completely off in a month or so. I was hoping that it would be miraculous results like some other folks have had but no such luck. The only thing helping is pain meds and the vitamin cocktail and not over doing physically. So I guess neutral maybe.

[georger]

Thanks, I'm very grateful to you both for that information. Craig's experience is similar to mine. I did find that gradually increasing the dose over many months with regular blood pressure monitoring allowed some kind of adjustment such that my BP did not drop significantly. Let's hope that the researchers discover a similar treatment that benefits those with one of the genetic mutations that does not respond to verapamil.

[leteeters]

I went completely off verapamil and within 2 or 3 days I could tell. Pain got worse,muscle twitching worse,cramps worse. I am now back to 240mg a day. I guess the best I can tell is that verapamil helps like 30 percent. That does not sound like much but it's quiet a difference. So my TAM responds some to verapamil. If I deviate any from verapamil, vitamins, pain meds I can tell. I also know without a doubt that my TAM is getting worse. I am 52 and terrified that by the time I'm 62 I will not be able to do anything. Just a mystery I guess.

[georger]

Thanks again for that info. It confirms the experience of the few of us who have tried verapamil and benefited from it.

I've thought quite a bit on how best to respond to the other part of your post about the progression of TAM. After more than 20 years of symptoms of myopathy, my experience has been fairly positive, but that counts for nothing because we are all different. There are some positives that cheer me up:
1. Excluding Stormorken syndrome, which has been described as TAM on steroids, I don't know of any TAMites who are severely disabled. Given the wide spectrum of us, there are probably some, but my feeling is that it is rare.
2. TAM may progress slowly if you are sensible and careful and don't fight the disease by exercising excessively thereby doing a lot of damage. (Been there, done that, stupid me.) If you are lucky, progression may stop for some time and the effects stabilise. This gives you a lot of time to adjust and humans are very good at this.
3. There has been some research on the effects of positive and negative life events on mood. The results were quite counter-intuitive. Say you win the lottery, obviously you are pretty happy about this for a while, but then your happiness settles back down to the previous level. Similarly a downturn may hit you very badly initially, but with luck happiness may well be restored in time.
4. You may have done everything you can about TAM, such as trying verapamil and other drugs, getting your DNA tested at IGBMC and consulted numerous medicos and caused most of them to scratch their heads in puzzlement. TAM as such is not going to kill you, but other things might. There are a lot of obvious things you can do about your general health:
- don't smoke and avoid those who do,
- minimise alcohol by keeping within the relevant guidelines,
- eat a healthy diet including lots of fruit and vegetables, avoid salt and follow the other guidelines about fibre and so on,
- keep your vaccinations up to date and
- get a bit of exercise carefully within the limits imposed by TAM. Obviously this is the hardest one.
5. Maybe the most important one. Keep busy, be in love and have lots of socialising with friends and family.

Comments please. What have I left out or got wrong?