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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