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Re: effects on mexetil?

Mexitil is a sodium channel blocker and it's as close as we have come to compensating for a low-functioning chloride ion channel. Hopefully some day we'll have a targeted medication, but for now Mexitil seems to be the most effective for the largest number of people.

However it can cause side effects that are serious enough for some people to stop taking it. You just have to start slowly, stay on the lowest dose that relieves the stiffness, and make sure you get regular monitoring of your heart function.

I have never taken it, but several here do use it and hopefully they can tell you their personal experiences.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: effects on mexetil?

Thanks Jan for you reply. I am going to Brazil (where I am originally from) and I believe they may sell it there. I will definitely take in small dosage in the begging and hopefully no side effects.

Type of Myotonia: Congenita

Country: australia

Mexiletine Use - Have No Fear

Mexiletine has been a wonder drug for me for probably 15 years now. I have had no side effects of any kind and was up to a dose of about 600 mg. It almost completely resolves the muscle stiffness for you and gives you your life back. Because its a cardiac drug, some physicians are hesitant to prescribe but your neurologist will understand what its used for. It was a totally worthless cardiac drug but works magic on Myotonia Congenita. I was part of a study at the University of Kansas Medical Center where they tried to determine why Mexilitene works so well. Its still a mystery.

You will still have episodes of stiffness if you get your muscles in real cold weather. Lots of exercise will also make you stiff. All in all 100 percent worth it.

Here's the downside - you start out at the minimum effective dose of Mexiletine. Over time, for me at least, the dose had to be increased. I have diabetes and Ulcerative Colitis which are also factors you may not have. Quite a high percentage of Myotonia patients also have insulin resistance issues and diabetes.

I am at the point now where the Mexiletine no longer works for me. I have been on every other possible medication and the Mexiletine was the only thing that worked. If you want to talk side effects, I'll tell you stories about ALL the other meds out there. They either put you to sleep like a vegetable, cause depression, destroy your gums, etc.

Go with Mexiletine. Its the best thing out there right now. All the best, Stuart

Type of Myotonia: Thomsen's -Severe

Country: USA

Re: Mexiletine Use - Have No Fear

Hi Stuart it work wonder for me aswell, when I took it in 2006 I felt normal I actually ran from a walk and got up after sitting down with reletive ease, did the mexi cause your diabetes or was it something else? Also I tried another one of the 3 aswell called carbamazapine I think it is for ppl with bi polar but it is also a mood stablizer, and you are right I got mouth ulcers like 5 so my neurologist told me it was a good idea to stop it, also could you plz tell me why it doesnt work for you anymore? I know you can get a tolerace to some drugs e.g sleeping pills like if you take them long term they become less effective but say mexilitine is a long term drug like say you have depression and you take prozac 60.mg and you feel great you dont get a talorance to them sort of drugs, I used to get mexilitine from germany just on a 200. mg made a big impact on me but germany has stopped sending it to england so I have been to my g.p 3 weeks ago to have my 1 year appointment brought forward, just waiting for a letter in the post all the best Martone

Type of Myotonia: not sure

Country: britain

Mexiletene and Diabetes

Martone, Thank you for the kind and prompt reply. Thank you also for the warning on Carbamazapan (Tegretol). I was not aware it could do that. Your question about Diabetes is very interesting. My father had Myotonia Congenita and late onset diabetes. I had the same only my diabetes was much earlier. My Myotonia was pretty calm until back in the 1980's-90's the statin class of drugs was introduced to help people control triglycerides, cholesterol, etc. I was put on these and it immediately triggered a full scale activation of the Myotonia which has not diminished to this day. DO NOT take Statin drugs of any kind with MC. It is forbidden for us. Back to diabetes - it is a proven fact that at least 25 percent of MC people have insulin resistant diabetes. I'm insulin dependent these days. The diabetes started before the myotonia outbreak. Is the MC a part of diabetes? With such a high percentage, it sure seems likely. Finding the link may take decades.

Why is the Mexiletine decreasing in effectiveness? I sure can't tell you but since starting it the dose has had to be increased. Its possible the Myotonia has just gotten so advanced in my case that nothing will control it. Best Regards, Stuart

Type of Myotonia: Thomsens

Country: USA

Re: Mexiletene and Diabetes

Hi thank's for the info, is it type 1 diabetes you have or type 2? Also carbamazipine had no effect on my muscles but thank's to Jan I know why they have been worse 2 weeks ago I cut my 60.m.g of prozac down to 40 and I am going to try and come off it, I would like to ask though as I think my type is beckers that I didnt think either type progressed I just thought that you live with it all your life but never gets worse apart from to much excercise and of course the cold weather but I think mine has been with me all my life but is it true thomsens you can have normal muscle function untill a certain time in your life where symptoms are apprent, also I read that ppl with the thomsens form have less severe stiffness to beckers and have stronger arm muscles just wondering if this was true, no one in my family that we could trace to say 100 years ago has no mc I am the only one so that is why I think it is beckers all the best Martone, I hope your mc gets better and hopefully one day a better drug with less sideeffects comes out I must admit one of the main reasons I stopped mexitiline in 2006 was the anxiety it causes me and the blurred vision

Type of Myotonia: I think Beckers

Country: britain

Re: Mexiletene and Diabetes

Thanks all for the reply. Martone, i am like you, I don't have anyone in my family with MC, so I think it is Beckers, but I had to say, I am heaps better today, I am 32 yo, but when I was at the school, age around 10 till 21 yo, it was severe. I used to walk in the street, stop at traffic light, when I start walk again I felt sometimes,very embarrassing. Today I am much better, I still have problem getting up from my office chair or going up the stairs.. I start to surf and do some aqua exercises, apart from getting my muscle a lot firmer (my friends get jealous on how quick we can build muscles)and I didn't noticed it to get worse. Which is a relief! I am from Brazil but live in Australia, I will definitely try to get Mexetilene in Brazil as they don't sell it here in Australia. Thank you all very much for the info.

Type of Myotonia: Congenita

Country: australia

Re: Mexiletene and Diabetes

Thank's for the reply, yeah we must have beckers then if no one else in family have it, I dont excersise much so that might explain why my muscles have been so stiff latley, its been 4 weeks now since my g.p sent the letter to my neurlogist and still have not been back in touch with me, I started mexilitine this year only 50. mg, then to 100. m.g, but then the chemist told me that germany has stopped sending it to england which was a big blow for me, but I have now been told by my g.p that other countries like america will do it so it was my g.p idea to have my appoint that I only see him once a year but it was the g.p idea cause only he can authorise this, my calf muscles are massive but yet my arm muscles are not I dont know weather this is because I have beckers type myotonia congenita or what I have heard ppl with thomsens have less severe stiffness and stronger arm muscles do you or anyone else on this forum know if this is true?

Type of Myotonia: beckers I think

Country: britain

Re: Mexiletine Use - Have No Fear

I have just begun taking Mexiletene-quite literally today!! We cannot get Mexiletene in Australia, however my neurologist ordered it for me from America.

I am taking it because I am a horse rider and I have become tired of falling off a horse every time they make a sudden move! Last week I was knocked over just leading my horse into the stable. A bird flew out of a tree and my horse jumped, knocking me to the floor. His hooves came within an inch of my face, I honestly think I could have been killed. I just lay there paralysed with stiffness while he ran away!! I have experienced this all my life and just got on with it, but this time really scared me. Anyway, hopefully Mexiletene will help!!

Type of Myotonia: Thomsen's

Country: Australia

Re: Mexiletine Use - Have No Fear

do you live in Australia? Great news, are you based in Sydney? Oh I really want to see your doctor. I start to surf and it is very frustrating to have the skills when my muscles works but not when they decided to stop, I am also worry to shift when I fall from a surfboard and no be able to move under water....

Type of Myotonia: Congenita

Country: australia

Re: Mexiletine Use - Have No Fear

Hi Giselle,

No not Sydney, I live in Perth! You really need to see a neurologist and talk to them about it. You are brave to surf, especially in the cold Sydney waters!!

Good on you for just doing what you love, just take care of yourself. Go to a GP doctor (just your normal doctor) and ask for a referral to see a neurologist-preferably one with knowledge of myotonia.

The doctor has to apply for the medication, then it has to be approved by the SAS in Canberra and it is then sent from the US. Good luck, I will let you know how i go with it.

Type of Myotonia: Thomsen's

Country: Australia

Re: Mexiletine Use - Have No Fear

Hi
I live in Brisbane. Last week I saw my neurologist & received SAS approval for this medication. I had tried it previously and only lasted 5 days as the reaction felt like I was short circuiting or something. I recommenced in March this year on 50mg tolerating it ok. Now have just increased straight up to 150mg dose once per day then have to increase to 3 times per day. The increased dose has only been for a few days & found a little blurry vision (thats if its the meds) & this morning just starting the electric shocks again but not as frequently). Has anyone else had this sensation its like when you get a fright & nerves tingle to the extremeties. I don't know how else to describe it. Is it something I will have to perservere with. I also have Crohns/Colitis with sugars going up & down nearly pre diabetic. Dr did DNA test at visit last week - how long does it usually take for results I forgot to ask?

Type of Myotonia: Unknown

Country: Australia

Re: Mexiletine Use - Have No Fear

Hi Giselle,

I just found this website today! very exciting to hear others stories about a condition no one else seems to understand! but i am from sydney, and i also take mexilitine. i know you posted a while ago about this subject, but i just wanted to let you know that mexitiline has been a god send! makes me almost normal! do you have a regular neurologist that you go to?

it is quite difficult to access the drug, but i found that if you go to a hospital pharmacy they can get it for you. the only downside is the cost of mexilitine.

Thanks,
Olivia

Type of Myotonia: Congenita - Thomsen

Country: Australia

Mexiletine and Lacosamide

I was on Mexiletine for probably 10 years with no side effects at all. I was under the constant monitoring of a cardiologist. It absolutely relieves the stiffness completely. The only times you will get stiff again are if you exert yourself a great deal or if its cold outside. It sort of overcomes the drug's effect for a short time. The only problem for me is that I kept having to take higher and higher doses and it became ineffective over time. I am now on Lacosamide (Vimpat) in place of the Mexiletine. Its going to be in a clinical trial at the Kansas University Medical Center if they can get it approved. Its the only drug short of Mexiletine that shows true promise. It is not as effective but I feel it is helping. It is WAY less tolerant of a missed dose, so DON'T miss a dose! With Lacosamide, you get stiff immediately if you miss a dose. I take 200 mg twice a day right now, but it will have to go up because I don't have the relief I want. Don't be too frightend of Mexiletine. Of course, if you have side effects, stop the medication immediately. I don't think you will if you ramp up slowly as the moderator mentioned. Best Regards, Stuart

Type of Myotonia: Thomsens

Country: USA