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Re: Myotonia and alcohol, tobacco and other pleasures

Hi - I have never smoked, so I can't answer that - I am not a fan of cigarette smoking at all. I don't enjoy alcohol usually - rarely, I will have a margarita, and sometimes (about once a year), if my husband has a beer, I will have a sip. I have only been tipsy twice in my life, because I never liked the feeling of being out of control. Knowing that I could also cramp up and stiffen, and falling might be more of a hazard if I were not in control of my faculties might also have been a reason. It's especially not a good idea to fool around with mind and body-impacting substances (in my opinion) with something like myotonia, because if and when your mental and physical judgment is impaired, it increases the risks of being hurt even more. Personally, I don't see that as a good thing. best - lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Re: Myotonia and alcohol, tobacco and other pleasures

Jonas:

If you actually have myotonia congenita, which is a chloride channel disorder, then I would be concerned about becoming intoxicated because you have mobility and balance issues as it is and really need all of your executive functions to prevent falling or choking or some accident.

Should you become injured or some such thing due to one of these parties, and you end up in the hospital, they may have to intubate you, depending on your injury. Should they be unaware of your condition, and happen to use a drug called suxamethonium, also known as succinylcholine during this process, due to the effect of the drug on the chloride ion channels, you may experience what's called a masseter spasm, where your jaw clamps shut. This could greatly delay the intubation process, resulting in serious brain injury or death.

If you actually happen to have myotonia due to a sodium channel mutation and end up in in the hospital and unable to communicate your condition, the suxamethonium/succinylcholine along with a few other drugs they might administer during this process or if they have to administer general anesthesia, could cause a life threatening reaction called malignant hyperthermia.

Depending on what type of myotonia you have, alchohol alone could make it worse.

My best advice to you is, stay sober :-)

Type of Myotonia: Becker

Re: Myotonia and alcohol, tobacco and other pleasures

I think Jenna touched on an important thing in her post, and that is choking. Just looking at the list of famous people who died from asphyxiating on their vomit while drunk (Bon Scott, Jimi Hendrix, etc) and presumably they didn't have a condition that can cause difficulties with swallowing.....

Type of Myotonia: Unsure

Country: USA

Re: Myotonia and alcohol, tobacco and other pleasures

Aw cmon guys and give the kid a break. I obviously wont condone the use of illegal drugs but dont think a few beers is going to do much harm as long as it isnt taken to excess. I enjoy an occassional drink and will admit that several times (mainly when I was much younger (currently approaching 50)) that I have been (sometimes very) drunk (its all part of growing up). Yes there is a danger, but there is a danger with many things in life and also to people without our condition. I dont think we should wrap us all up in cotton wool (although it would take the sting out of any fall).

Type of Myotonia: Beckers

Country: UK

Re: Myotonia and alcohol, tobacco and other pleasures

Well firstly I would advise moderation and sensible drinking. I haven't really experienced this shallowing problem thing, but I have just been diagnosed with OSA that is attributed to my Myotonia.

I would also mention that people like Bon and Hendrix drunk an excessive amount to finish dead. We're talking whole bottles of spirits, straight to get to their point. This is not normal. So moderation is the key here.

the points about balance and such are good points. From my experience, I have found that the lack of balance and the stiffness is cancelled out by the muscle relaxing effects of alcohol. so while under the influence I have actually been able to move a bit better and I'm also less concerned about people looking at me so would just walk instead of trying to hide things. But stairs were still a problem and in fact would often lead to bar staff deciding I was more effected that I was, even sometimes when I was first arriving at a pub, before having anything to drink.

What I have found is that my "stiffness" is worse when I'm dehydrated. Alcohol dehydrates you. So this is bad because 1 or 2 or 3 days later I would be much worse at exactly the time when I would care if people are watching me.

So really practice moderation, if you do drink. I limit myself to no more than 3 beers a night and mostly only have 1. Also, in Australia at least, there are a number of decent low alcohol beers, because of drink driving laws. These are great as all the bad effects are lower, but they still taste like a good beer.

I'll defer to others comments about long term effects because I don't know about that.

Tobacco I can't help. Other pleasures depending on what that means, chemical based pleasures are all bad from giving you mental problems to killing you. Sport and exercise pleasures are great. The best I've ever been with my condition is when I was exercising everyday - bike riding at least 16 km (10 miles) plus extra sporting activities soccer, touch football. But no softball or baseball or gymnastics. In fact, I was very disappointed that I was hopeless at cricket, a game that can take 5 days to finish and still end up a draw. Clearly a lot of standing around in that game.

Type of Myotonia: Thomsen or Becker - bit confused

Country: Australia

Re: Myotonia and alcohol, tobacco and other pleasures

Having had myotonia congenita for over 50 years I can tell you that the cleaner your lifestyle the better shape you'll be in with this disease downn the road.

I partied more than I should have and I can assure you things would have been different for me had I not. As my brother who also has myotonia put the P in party and he can barley walk now. He is like an old old man and he is younger than I am. So take care young man, you'll not regret it.

K

Type of Myotonia: Thomsen's

Country: Canada