I've come across a couple of papers on the internet reporting the successful use of dantrolene sodium fro the treatment of MC, has anyone else had any experience or knowledge of it?

I'm going to see my neurologist on Thursday, I've been without medication since February since they trialed both Clanazopam and Baclofen without success; it's been a real struggle with my MC symptoms getting the better of me. I feel that if I don't come up with a worthwhile alternative to Mexitil, which is no longer avialable in the UK, then no one will!

Pete,

There was some research done years ago on using Dantrolene to treat myotonia (I think the studies were specific for myotonic dystrophy) but as I recall it wasn't that helpful on a daily basis and had some serious potential side effects. I haven't seen any newer studies.

The proven MC drugs besides Mexitil are Quinine Sulfate, acetazolamide (Diamox), carbamazepine (Tegretol), and phenytoin (Dilantin). These all have their own risks that you have to consider and what works well for one person may not have any noticeable effect for the next. I don't know if that's because of different mutations or just individual body chemistry.

I'm still keeping an eye out for a reputable pharmacy that will ship to the UK.

Jan

Thanks Jan.

I looked into purchasing Mexitil privately but the cost is exhorbative.

I've phenytoin and it was a disaster, no relief of symptoms and terrible side-effects, but I hear it works fine for other MC sufferers! Just one more question about our condition.

I know that not everyone supports the use of drugs but my symptoms are quite severe and with the muscle weakness as well I can suffer serious injuries following a fall; I've already had a fractured skull! I will mention the Quinine Sulfate, acetazolamide (Diamox), carbamazepine (Tegretol) to my doctor tomorrow though.

Many thanks.

I would suggest starting with carbamazepine (Tegretol) and see if that works since it's very similar to Mexitil. Here's are a couple of abstracts about it:

Myotonia Congenita – A Successful Response To Carbamazepine

M.R. Savitha, B. Krishnamurthy, Abbas Hyderi, Farhan-Ul-Haque and Nallur B. Ramachandra1

Department of Pediatrics, Government Medical College, Mysore, 1Department of Studies in Zoology, University of Mysore

ABSTRACT. Myotonia congenita is a rare disease of skeletal muscle characterized by painless myotonia, generalized muscular hypertrophy and a non-progressive course. We report a 10-year-old girl with myotonia, “Herculean appearance” and electromyographic confirmation of myotonic discharges. There was a dramatic response to carbamazepine. The aim of this report is to make the readers aware of this entity which can be easily controlled with medication and also prevented by genetic counseling.

[Indian J Pediatr 2006; 73 (5) : 431-433]

E-mail:savvvy62002@yahoo.co.in

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Iranian Journal of Pediatrics
2002;12(3) : 29-34

"Chloride channel Myotonia: Study of five cases "
"Ashrafi MR, Ghofrani M "

Abstract:
Chloride channel Myotonia is a form of channelopathy, and Myotonia is its manifestation. Myotonia may be defined as delayed relaxation of skeletal muscle after its contraction. Decreased chloride conductance across the transverse tubular system, renders the muscle membrane hyper-excitable and leads to repetitive firing, creating Myotonia. Myotonia congenital is another name for chloride channel Myotonia. Myotonia congenital appears in autosomal dominant type called Thomson disease, autosomal recessive type called Becker disease, and a type with sporadic occurrence. Symptoms appear in the first or second decade of life. Repeated muscle contraction, the so called warm up, result in resolution of the Myotonia stiffness. Muscle stiffness and hypertrophy is another finding at physical examination. In this study we report on 5 patients, which had clinical and electrical signs of Myotonia. Muscle hypertrophy and warm up phenomena were present in all cases. CPK measurement of all cases were normal. 2 patients underwent muscle biopsy that showed only atrophy and increased central nuclei. In three cases autosomal recessive inheritance (Becker), in one case autosomal dominant inheritance (Thomsen) and in one case sporadic occurrence was suggested. With respect to successful results of carbamazepine therapy in 4 patients, and being excellent in one of them, we suggest carbamazepine for the first choice of Myotonia treatment.

TUMS ID: 1311

Hi Pete,

Have you looked into getting the Mexiletine pills from Australia? I find they're readily avaialble here...

Good luck

Daniel

Well that was a bit of a surprise!

I'm back on the Mexitil and the hospital pharmacy assures me that they can get my prescription filled even thought the drugs company have discontinued it in this country!

Not that I'm complaining - I feel great at the moment!

Yeah! Hopefully enough people complained that they decided to bring it back. I've written and talked to the manufacturer a couple of times since they stopped distribution in the UK and told them it was the best medication for our condition they needed to make it available through a special program if necessary.

Maybe the healthcare system was able to negotiate for a generic form. Can you tell if it's the brand name made by Boehringer? The other labs now making it are Novo, Roxane and Teva.

Jan