myotonia congenita

[maxmax11]

Looking for new developments with either alternative medicine or medicine to assist or eradicate myotonia congenita.

[manchester2]

You sould take at least 150mg  to 200mg of mexitil 3 times a day, every 8 hours tried for a week, you shoud see results after a few days, try to avoid alcohol as this can make it worse..
Please lr us know the results

[maxmax11]

Thank you.

[maxmax11]

I'll give it a shot....thanks.

[maxmax11]

I've been reading up on this drug and its great that you are having success with it as it only helps maybe 1 in 5. Good for you ....will read up more on side effects and then maybe give it a go. Was really hoping for something more holistic though.

[maxmax11]

I'm on Dilantin - 100 mg 2 a day - I take them before bed as it helps sleep my brother takes 4 (same dosage) This drug is used for epilepsy kind of makes sense with regards to seizures and stiff muscles. I'd say it helps me by about 50% with regards to movement but not discomfort. It is also a very inexpensive drug and with little side effects - well that's been my experiance anyway.  

[maxmax11]

Yes I have it and was diagnosed when quite young, my brother has it too. I think being able to discuss it with others would be beneficial. My brother has it much worse as he lived a pretty rough life (alcohol and drugs) and that very much worsens the MC condition. So someone who has been for the most part taking care of themselves - I'd be very interested in sharing info with.

[maxmax11]

Thank you - all very good advice and it all helps in the immediate - unfortunately not in the long-term though. It is not a circulation issue though it’s a muscle one. Still short-term relief is far better than none at all.

[Arjmand_tahir]

I am also suffering from MC
Mexiletin capsules?
number and quantity of dose in a day?
reply on arjmand.***@****

[joey678]

I'm using magnesium malate for a month now it's still the same. I also have Myotonia congenita

[joey678]

I'm using magnesium malate for a month now it's still the same. I also have Myotonia congenita

[Visaparames]

Thanks for the feedback. Will do as per your advise and if there are any improvements will post it.

[JKenton]

Keep active and in better than average shape. Keep warm. Keep calm. Avoid excessive caffeine consumption and stay away from certain pestacides and herbicides.

That's about it.

[hava]

Good to read your feedback. In Yog, pranayam needs to be done 80 percent of the time and asanas and light exercise for the rest of time.It is the different breathing techniques for the suggested duration, that help to improve the internal systems of the body and in turn you feel the benefit gradually.Once you can do kapalbhati and anulom vilom for more than 20 minutes you will have something positive to say. So keep your feedback coming, and others will also write.

[Visaparames]

Thanks for your advise. I suffer from myotonia congenita too. I am not under any medication. I have taken up hatha yoga to reduce muscle stiffness. It definitely helps!  I am also meditating. Yes, i am doing anulom vilom but only about 7 minutes a day. will try it longer. Havent tried kapalabathi yet.Will give it a try. Thanks again for the info.

[hava]

Myatonia Congenita affects relaxation of mucles. These 2 pranayam techniques will send extra oxygen to the muscles and improve the nervous system and in turn the MC condition will get better over the long term. Please come back with your feedback in 3,6 or  12 months to help others.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.

[Cristaline]

Hi there,
           I'm pretty sure I have a form of MC too and it is becoming very difficult to competitively participate in sport. It takes a long time to see a specialist where I am (Ireland) but I hope to get medication soon. I used to have only mild and intermittent symptons in the legs but now it has spread to many other muscles around my body and I too am very stiff after heavy exercise. Trying to make tea after a football match can even be an adventure from getting up from a chair to turning the tap but I'm aware there are much more serious illnesses one could have!
Tom

[Stephd3006]

I am 21 years of age, have Myatonia Congenita and have been taken mexiletine for almost 4 years now.

Where it is not suitable and safe for everyone, it has worked for me and other members of my family who are also sufferers of the neuromuscular condition. With using this treatment, I experience very little symptoms and most of the time no symptoms at all.

Since taking it, it has completely changed my life and am now able to do things I was not able to or had difficulty doing before. It may not work for everyone but is worth asking your GP or neurologist about.

Hope this may help some people.

[di402]

I have Myatonia Congenita as well. I have never looked into natural medicine but I know salt can contribute so a low salt diet may help?? I also have found pilates to be extremely helpful as it strenthened my muscles.

I am beginning a treatment of Metixilene which my brother has taken with not much success. I have never taken anything for it, but I will let you know if it is at all effective for me.

Four years ago I moved to a warmer climate and I have found it has improved as I dont have to suffer cold winters however I still have quite restricted movement. Anyway if you want to ask me anything else Ill be glad to help!!

[gymdandee]

Source Naturals makes Magnesium Malate

[TK19]

do you have myoyonia congenita? I have it too and have found that its getting worse as I get older. The times when it flares up the most are when I go from cold to hot or hot to cold quickly and also almost every time after I work out (intense cardio)... it happens less when I do lighter activities like walking or yoga... I'd be interesting to talk to someone who also experiences it

[Paxiled]

Since this is genetic, there's no cure.  And since it is genetic, you're probably better off seeing a naturopath for long-term treatment if there is any.  But some ideas.  You might want to try a magnesium supplement.  Magnesium malate would be best, but you probably won't find it, so try magnesium citrate.  It helps the muscles relax.  Skullcap is a good herb for muscle relaxation, as is passionflower.  There are antiinflammatories such as boswellia, turmeric, ginger, and bromelain that might help.  And there are circulatory aids that might help, such as gingko, gota kola, horse chestnut, witch hazel, and hot herbs like cayenne and cinnamon.  Acupuncture might help regulate your circulation as well, and a practitioner of Chinese medicine might actually know an organ that is blocked by this condition and can help it operate better.  Tai Chi and yoga and martial arts and swimming and bicycling might be nice smooth exercises that won't cause you to stiffen as much as exercise with a lot of stops and starts, but should be started slowly to see if you cramp or stiffen up too badly.  That's why the stretching exercises such as tai chi and yoga might be helpful.  You see where I'm going here?  There's no cure, but you might be able to make your body function more in rhythm with what ails you -- that's how natural medicine works.  But I would recommend a good holistic practitioner to work through this, because there may be good reasons not to use certain remedies due to the nature of the condition you have.  Good luck.

[margypops]

Could you explain to some of us what this is, I do not know and I may not be the only one.