It's been a while since I was last on here so you may not remember me so to start off with, I'm Paige, I have Becker type, I'm 14 and I' from England.
On the Myotonia Facebook page I recently posted a status about medication (sometime in July). It was basically about how I was preparing to start my first proper medicine instead of just pain killers and how I would like to hear other people's views and experiences with the drug (tegretol). I started tegretol in August, first I was on 100 mg a day and then every two weeks I would increase the dosage by 100 mg.
At first it really seemed to work but then, as time went on, my body seemed to get used to it and it just wouldn't work anymore so I stopped taking it.
At the time I didn't realise it but the medication seemed to have also made me into a zombie. I was tired all the time, I struggle with homework and school work, I was grumpy and snappy. However, as soon as I stopped taking them I felt instantly better- even my stiffness had decreased!
Although that was back in October and I can feel the myotonia getting stronger almost and I'm struggling. Therefore I am going to see my specialist in February who, unbeknown until a few weeks ago, has already been to Great Ormond street hospital to issue a licence to try me on mexiletine as I'm the only known of child to be tried on it so far.
I would like to know if anyone has tried mexiletine and what side effects it carries ect as I feel tegretol wasn't fully explained to me. Thank you and I look forward to hearing your replies.