Verapamil

[leteeters]

OK just a quick update. I am on Verapamil 120 mg since July can't tell that it's helping yet. My GP is going to increase dosage to 240 mg for a while we'll see if that helps any. Thanks again for every ones help I hope every body is hanging in there ok.

[georger]

Thanks for letting us know. I am very interested in this. On a dose of 120 mg, it is early days yet. Glad you are sticking with it and let's know how you go.

[leteeters]

Thanks georger, well this is my second refill at 240mg of verapamil I still can't tell anything yet. I guess I am expecting to much to soon. If the verap works is it a slow and gradual thing or do you just wake up one day and suddenly feel better. Thanks ET.

[georger]

Well we are all different, but in my case it was very gradual. At the same time I was gradually increasing my endurance over some months by carefully increasing gentle exercise and getting somewhere. Not very scientific was it? After about 6 months on a middling dose of Verapamil I thought that it was not doing anything and ceased only to find that my condition dived. So the improvement can be subtle at first. Most gain came at 300mg and more. Good luck and thanks for letting us know how you are going.

[leteeters]

One good thing so far is I have not noticed any side effects at all. Doc started me out at 120mg of Verap. for three months then to 240mg for three months and will be bumped up again. Hopefully I will start to notice something soon. Thanks ET.

[georger]

Well, I nearly missed your post among the others about chainsaws and barbed wire. I'm hoping you see some improvement soon too; I've got my fingers and toes crossed.

[georger]

Just a thought, have you been checked for a mutation in the STIM1 gene? I don't know if there is any correlation, but in my case, very responsive to verapamil > 300mg/day and no STIM1 mutation. Must be an as yet unidentified mutation.

[larrysc]

Hi all,
I to am on Verapamil. In my case, I have Congestive Heart Failure CHF, and I was taking blood pressure medicine anyway, so when I mentioned the possible beneficial side affects for TAM my doctor agreed it was worth a try. Verapamil is a very old blood pressure medicine and therefore also cheap. I started Verapamil several years ago and I cannot confirm any benefit, but I don't know how I would feel without it. After I read the followup on the article where one TAM person was able to walk again, I talked to my doctor about stopping it. He decided I should just stay on it for my blood pressure. The followup on the article stated that after a time, the person had a large setback and ultimately they decided that the affect of Verapamil was more of a masking of symptoms (primarily pain) than anything substantially beneficial. They also mentioned that it could make TAM worse since it masks the pain and indication of the damage being done to the muscle. I wondered if anyone here is aware of these findings?

[georger]

Hi Larry,
"... the affect of Verapamil was more of a masking of symptoms (primarily pain) than anything substantially beneficial."
Not so, the suggestion is that there may be a secondary masking effect, not that there is no primary benefit as a calcium channel blocker which may be very significant in some but not others.

[larrysc]

Well George, I stand corrected, but I certainly remember the article. I read up on the DNA discovery and things have changed since I last looked into TAM. At that time, an elevated creatine level was an indication of something other than TAM. As people have observed here, the Internet is full of old, and misinformation mixed in with the good. I apologize if I misled anyone in this regard.

[larrysc]

Ah, I found the article I was referring to. Take it for what it's worth...

How I Came to Walk Again - treatment of tubular aggregate myopathy with verapamil


home: tubularaggregatemyopathy.info


Note: this is only one case, verapamil may not work for you.

About 13 years ago, in my mid 40s, I began to have excessive muscle pain in the legs during and after exercise. Strangely, the best preparation for exercise was rest. The mystery disease progressed, muscles shortened and weakened and function declined so that in 2002 I began to use a wheelchair. Further decline saw me almost completely dependent on a wheelchair and only able to walk a few steps with 2 sticks. Now, against all my expectations, I am able to walk 40 metres without sticks and 400 metres with. (In the months since I wrote this my walking distance has increased further to 1 kilometre; where will it end?) This may not seem much but it enables me to have some days that are 90% wheelchair free and has made an enormous difference to my range of activities.

How did this come about? A lot of health professionals contributed and these are some of them.

Keren Tannebring, the physio, reasoned that as there seemed to be an element of delayed onset muscle soreness then I should benefit from gentle progressive concentric hydrotherapy. Keren proved to be right and spectacularly increased my walking distance.

A diagnosis was elusive until I saw Professor Edward Byrne who arranged a muscle biopsy and diagnosed myopathy with tubular aggregates. This diagnosis was crucial.

Over the 11 years I have consulted more than 20 physios, GPs and specialists. Of these Tori Wilckens, now of Neuro Sense Physiotherapy, has put up with me for the longest time. Tori is a font of good advice and by physio, hydrotherapy and swimming has kept recalcitrant muscles functioning as best they can.

My hamstrings had been shortening for some time and were threatening my ability to transfer and to drive. Dr Roy Lee, then Director of Rehabilitation at the Queen Elizabeth Hospital, had the brilliant idea of injecting the hamstrings with phenol. This is an old fashioned treatment for spasticity, but then I do not have spasticity. It worked, possibly by suppressing the stretch reflex. I was able to stretch the hamstrings a very useful amount without damage.

In February 2006 I read yet another medical journal article on the net. One of the patients in this study had tubular aggregates (without a formal diagnosis of tubular aggregate myopathy):
MUSCLE & NERVE 9:635-641 1986 [abstract]
A Double-blind, Placebo-controlled, Crossover Study of Verapamil in Exertional Muscle Pain

Russell J. M. LANE & others.
I had no real expectations of verapamil because the best candidates, dantrolene, prednisone and diltiazem, had already been tried, to no or negative effect. On the basis of the article my GP agreed to trial verapamil. This is a primarily used to treat high blood pressure and as my blood pressure is normal there was a significant risk of low blood pressure and its consequences. Therefore my GP took the dose up in slow stages and regularly monitored my blood pressure and heart rate. After 12 weeks on 240mg (the dose in the article) there was no significant effect for good or ill and I wanted to abandon the trial. My GP advised me to stick at it longer and how right he was; another crucial link in the chain. For a year my muscles have continued to gain strength and exercise tolerance very slowly, even to a little careful ladder climbing.

What have I learnt from this?
Never give up hope. You may be told, “There is no treatment”. Never accept this. There is always something that will make you feel better and may be therapeutic. Keep looking.
If you have a rare disease, doctors will not usually have the time to research it and to keep up to date. Do the research yourself and if you find a treatment backed by credible medical evidence, most doctors will be willing to try it.
The right physio can do a lot for you; muscle charting, hydrotherapy, stretching, advice on exercises, gait training and advice on mobility and other equipment. Not only can physio keep you functioning as best you are able but it puts you in the best position to benefit when that breakthrough comes.
Warning

Since I wrote this I continued to improve, peaked and then declined. Fortunately I am still walking. Verapamil has enabled me to do things that I never expected to be able to do again. However I suspect that it also masks to some extent the usual warning signs that I have over exercised. Hence exercise has caused the unspecified damage/injury that is associated with TAM and progresses the disease. So if you benefit in the way that I have from verapamil or other calcium antagonists, take it very slowly and avoid anything like excessive exercise.

[georger]

Thanks Larry,

Nice to be reminded of what I wrote some years ago and good to see that it is still being read.

George

[georger]

Perhaps an explanation of the effect of verapamil would help, rather than my life story quoted above.

Just about the last action in the sequence initiating a muscle contraction is the release of Ca++ ions. This depletes the calcium store in the muscle which is replaced via the calcium channel. The STIM1 and probably other genes sense the level of calcium stored and initiate this replacement. TAM is a mutation in these genes which results in a missence and excessive amounts of calcium entering the muscle and disrupting its action. The cell is believed to attempt to protect itself by locking up the excessive calcium in tubular aggregates. Therefore tubular aggregates are pathological, rather than a normal part of muscle functioning.

Now you cannot combat this by reducing your dietary calcium, because it just comes out of your bones. The action of a calcium channel blocker like verapamil is to directly reduce the excessive influx of calcium. The primary benefit is to partially reverse the effect of TAM, rather than as an analgesic.

My impression, from my own experience only, is that as well as the highly beneficial effect of verapamil that some, but not others, may derive from it, there may be some secondary effect in masking to some extent the symptoms that warn you that you have had too much exercise. As always with TAM, take it easy.

[larrysc]

I just came from my appointment with my cardiologist where we discussed Verapamil. I see the cardiologist because I have congestive heart failure CHF. At first, doctors thought my CHF was responsible for the symptoms I was experiencing but after the muscle biopsy I was diagnosed with TAM. It wasn't that simple, but you get the idea.

Anyway, back to the talk about Verapamil with my Cardiologist. He told me that Verapamil like all calcium blockers does a good job of reducing blood pressure but, and this is the important part, at doses at and above 300mg they can actually make CHF worse. This is also true of all calcium channel blockers, he said. It has to do with the affect on the heart muscle. I am not sure how this affects individuals without heart problems, but something I thought might be worth talking over with your doctors. I currently take 240mg. I may still yet try upping the dose, but not until I talk with my regular doctor who acts as my coordinator of care, to see what she thinks. Certainly worsening my CHF would not be a good side affect of increasing my intake of Verapamil. I would be interested to know what your doctors think if you chose to discuss it with them.

[georger]

Sorry Larry, I cannot comment about calcium channel blockers and CHF. Does anyone else have congestive heart failure?