Hello and Happy New Year! I've been a part of this forum for quite some time and very thankful for it.

Its been some time since I've done any research and just wanted to see if anyone knows of any new medications that might be available to treat our disorder. I'm not sure if I have Thomsen's or Beckers. I do know that a lack of carbs in my diet greatly increases the myotonia. I can't remember but someone had mentioned before that this is a sign that it is one of the forms more so than the other.

I was diagnosed at 19 and when I first took my 250mg dose of Mexiletine I thought that GOD had given me a knew body! Unfortunately that only lasted a few weeks and since then Mexiletine has been rendered useless; I think my body built an immunity to it. I've never taken any more than 1000mg in one day but possibly thinking about trying 1300-1500mg to see what happens. I've read that around 1200mg is the max in a total day but also read of cases where people have taken a lot more in special cases. Any tips?

I stopped taking Mexiletine several years ago (because it was ineffective) but also because it was causing elevated enzyme levels in my liver. I've gone by several years without it but now I'm 33 years old and my myotonia has gotten worse. I'm not sure if this is due to getting older and my muscles just not being as responsive or if its the myotonia getting worse (probably both). The problem now is that when I workout or play basketball I cannot ever get to the "warm up" period. I am constantly stiff and this is not only frustrating but very difficult on my body. Now when I jump and land I am putting extra pressure on my joints and lower back. Working out/playing basketball is a way of life for me but now its getting very very difficult because I'm starting to have joint/lower back problems.

Any tips or new medications I might be able to try to stay loose. I've also tried quinine and it had 0 affect. Thank you and I wish you all the best!

Type of Myotonia: Unsure

Country: USA

I would suggest getting DNA testing if possible to determine which type of myotonia you have since the medications can be different for sodium and chloride ion channel disorders. I would not recommend going over 900 mg of Mexitil since it can actually cause heart problems in higher doses.

If you have not tried acetazolamide (Diamox) you might want to see if that one works better for you. It seems to be more effective for the sodium channel myotonias. Another reason it's important to know the exact type is because strenuous exercise can cause muscle damage over time if you have hyperkalemic periodic paralysis or paramyotonia congenita.

I also have to maintain a high complex carbohydrate diet (about 400 gm per day) or my muscles get weak. I found that taking Acetyl-L-Carnitine really helps (500 mg) and so does licorice root extract (1 capsule per day). Someone else on the forum tried the carnitine and it didn't help him, but it's a cheap experiment.

Researchers in Italy have found that the amino acid L-Taurine helps myotonia. This would explain why some have gotten relief from energy drinks containing taurine, but the caffeine would tend to negate the benefit. You can take 1-2 grams per day.

I do best when I limit sugar and caffeine as well as high potassium foods and potassium additives. Others don't seem to see any difference, so it does take some experimenting.

There are three labs that can test you for myotonia, Athena, Fullerton Genetics and Dr.Lehmann-Horn's lab in Germany. You can get free testing from him if you join the PPA at http://www.periodicparalysis.org but it takes many months to get the results and you have to be sure your doctor requests a copy.

Jan

Type of Myotonia: Thomsen's

Country: USA

Jan,

Thank you so much for the help! You are the pulse of this forum and we always appreciate your time and concern:) I remember when I first joined this forum a few years back you recommended that I created a chart and closely monitor what I eat and how it affects my myotonia. I have always taken your advice seriously and really appreciate the help:)

I have noticed that nothing I put into my body (including caffeine) really makes the myotonia any worse. However, eating does make it better and not as burdensome. If I am really hungry and lacking energy my myotonia is really really bad. I can barely move...

SO THAT'S WHATS IN THOSE ENERGY DRINKS! I started drinking Rockstar once to twice a week 5 months ago (during long drives for work) and I swear I was thinking that there is something in this stuff that makes me feel a little more loose and relaxed. NOW I KNOW and will try those capsules in moderation. THANKS!

I'm not sure if I've tried Diamox but will give it a try. I'm going to see the specialist in a few weeks. Also will give the Acetyl-L-carntitine as well as the licorice root extract a try along with the Taurine capsules. I will try each in isolation to see how they work and then combine later on. I am very organized and can't function without my digital calendar so this is where those skills come into play in keeping tabs of everything:)

My doctor did say that they could find out exactly what form of the myotonia that I have. The only problem is that it isn't covered by insurance and would cost about 400 out of pocket. Its not much but I think its about time I find out since I need to be more proactive in treating this because it is getting worse. If you don't mind......I will probably touch base again soon:)

THANK YOU!:)

I can think of at least one other person who mentioned Rockstar specifically as helping their myotonia in spite of the stimulants. I just checked a label and the original (and I believe most of the others) contains 1000 mg of taurine. That would tend to support the theory that taurine can help reduce myotonia, so it probably wasn't your imagination!

It will be interesting to see if any of the supplements help you. Because people who are in very good physical shape tend to have a lower body mass index and are more sensitive to insulin, it is important to keep your carbs up and not get hypoglycemia between meals.

Keep us posted!

Jan

Type of Myotonia: Thomsen's

Country: USA

Thanks again Jan. No joke the Rockstar did definitely make a difference. I remember one specific time (about two months ago) where I happen to drink one before playing basketball and it made a big difference. I've been analyzing that day for weeks now wondering what I ate or what was different that day that made such a difference and so far your insight sounds promising. It's funny I kept thinking, "it can't be the drink" but it does make sense now. Since then I have not had the opportunity to play again and looking forward to trying it out.

I consider myself to be in very good shape. I workout 5 times a week and spend 50 minutes on the elliptical. I go at a fast pace and burn about 650 to 700 calories each session. I have to work hard to keep my weight down since I eat a lot of carbs to keep the myotonia down to a minimum.

I will definitely keep you posted!


-Dong

There is a researcher in Italy, Dr. Diana Conte Camerino, who has corresponded with me about taurine and myotonia. This is an abstract from one of her older papers:

The effects of taurine on pharmacologically induced myotonia.

Conte Camerino D, De Luca A, Mambrini M, Ferrannini E, Franconi F, Giotti A, Bryant SH.


Source

Dipartimento Farmacobiologico, Facoltà di Farmacia, Università di Bari, Italy.


Abstract

Taurine reduces the excitability of striated muscle fibers by increasing the membrane conductance to chloride ions (GCl). This action was tested on rats made myotonic by drugs that block GCl by different mechanisms. Experiments were made "in vivo" using electromyographic (EMG) recordings and "in vitro" with intracellular microelectrode recordings from extensor digitorum longus muscle fibers. Taurine did not antagonize the myotonic discharges produced in vivo by anthracene-9-carboxylic acid, nor did it restore GCl lowered in vitro by this agent. However, when myotonia was chronically induced by 20,25 diazacholesterol, taurine given chronically in vivo or acutely in vitro antagonized the EMG myotonia as well as the reduced GCl and increased excitability of single fibers. We conclude that taurine acts directly on chloride channels to modify their kinetics. Our findings suggest that further clinical studies on the use of taurine in muscle disease involving abnormal excitability or chloride channel function will be useful.

Type of Myotonia: Thomsen's

Country: USA

Thank you!

No clue about drugs, but do weight-bearing exercises before trying cardio. It's way more effective at loosening up muscles. And make sure that your muscles stay WARM. My muscles never loosen when they are too cold. Underarmor's winter stuff is awesome for that.

Type of Myotonia: Thomsen's

Country: USA

Thanks Reya:)

YOu are right staying warm definitely helps:) However, I've noticed in recent years that I cannot get loose at all. I'm just always stiff. So now its time to get on the meds again. I only need it for sports thats it......to be competitive. I don't even need it for my workout sessions. Only when I compete which is 3 times a week:)

Thank you!

Type of Myotonia: Unsure

Dong,

Try Flecanide Acetate. I had the same problem as you where Mexiletine worked for a while but then I had to increase the doses so much it got dangerous and had to come off it. Carbamezapine did nothing either.

I'm 19 and now take 100mg of Flecanide twice or three times a day and have done for the last 6 years and it is brilliant. It also works instantly so if you miss taking it for some reason or are having a bad day and need to take more, it starts having a relaxing effect after about 20 minutes. Flecanide isn't licensed for Myotonia in the UK but it is as an antiarrythmmic drug and might be easier to get hold of in the US. Definitely worth a try, you said you play basketball, I play netball so pretty similar and really struggle without flecanide to the point where I stopped playing at school. But I started playing again and after warming up and as long as I keep running around the myotonia is almost unoticable which is an awesome feeling!

Hope this helps a bit!

Type of Myotonia: Unsure

Country: England

Thank you I emailed you:)


-Dong

Type of Myotonia: Unsure