Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
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