Verapamil

[nuttysmallholder]

We are struggling to get my husband's so-called muscle specialist to agree to any medications... as she says there's only anecdotal evidence and she won't prescribe anything unless it has gone through a randomised control trial with a TAM group. Not much chance of that, I fear... She did, however, prescribe a week's worth of physio - which so exhausted hubby that he gave up half way through day 2 hardly able to stand or walk. And I can't find any RCTs in a TAM group to support that! As I think folk have mentioned elsewhere on this forum, finding a specialist with any understanding of TAM is very difficult.

That said, hubby's GP (physician) is willing to try things - but since he has very low blood pressure to start with, verapamil and the other calcium channel blockers aren't appropriate (at least until we find out what's causing the low BP and get that fixed).

At the last visit a routine X-ray flagged possible signs of osteopenia (low bone density), implying some other calcium-related problem. Has anyone come across this in relation to TAM? There's some logic to bone calcium depletion as a result of TAM's tendency to lock calcium away. Has anyone tried calcium supplements? If so, did they increase pain/weakness symptoms or accelerate TAM?

[georger]

<rave> Sadly, my own experience with specialists is similar. I've seen 4 neurologists, only one of them was any good, and he is no longer in practice. The last was the most useless of the lot, just plain lazy. The only articles he read were those that I gave him and then only during the consultation. And he didn't understand them. </rave>

Given that there are so few TAMites, it is hard to believe that any specialist would see enough of us to develop any great expertise. But at least they should be open to suggestions. I think that with TAM the whole model of doctor centred medical practice that we are used to goes out the window. With any more common disease, we are used to consulting our local doctor and if he can't help, he sends us to a specialist who diagnoses and prescribes treatment. In the case of TAM, I think that it is more of a team effort with us part of the team and if medicos cannot accept this then they consign themselves to the rubbish bin.

The vibe I get is that our best support comes from our GPs. My excellent GP prescribed verapamil based on Russell Lanes' 1986 article in Muscle & Nerve. This was a double-blind crossover trial. What is remarkable about that article is that it reported positive results for some patients with tubular aggregates who were on verapamil for only a few weeks. And this with some poor patient compliance. As I have said elsewhere, my GP was very careful, starting verapamil at a low dose and increasing it gradually over a year with regular blood pressure monitoring. Of course, since then further research has firmed up the role of calcium antagonists in the treatment of TAM.

On rereading this, the whole lot is a rave. Sorry about that.

[Craig Lane]

Rave-on Pete. I think we have all had the same upward struggle to get our GP's or "Specialists" to prescribe medication. There is little to support our claims and even less when we have their budgets to consider. We need someone young / smart enough to do a degree in TAM they can then claim to be a specialist and we can quote them to our GP's. Any volunteers?

[nuttysmallholder]

A quick update on the use of calcium supplements. Hubby's bone scan came back negative, but he's been taking calcium supplements anyway for a few days now - and no exacerbation of the muscle pain. In fact, it seems like he's been getting fewer muscle cramps.

I know a sample size of 1 isn't exactly conclusive evidence, but at least in this case additional calcium does not appear to have worsened the symptoms.