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Medications

Hi everyone!
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.
Paige (beckers)

Type of Myotonia: becker

Country: UK

Re: Medications

Paige,

I'm glad you're getting to try the mexiletine. Whenever I post information about the different medication options I always put in a warning about Tegretol. I've known so many people who had depression and even suicidal thoughts on it. It seems to be worse for women than men, so perhaps our hormones intensify the reaction.

This forum isn't nearly as active since the Facebook group started, so you may not get many replies, but if you do a search there were quite a few posts about teens in the group using mexiletine. I think the youngest I've seen is 6 years old. Some took it every day and some just before sporting events. I am not aware of any psychiatric side effects. The main complaint seems to be heartburn so be sure to take it with food or an antacid (which is what the manufacturer recommends).

Did your doctor order a cardiac workup? That's usually done first, monitored fairly closely at first and then once or twice a year after that. It's a good idea to work up slowly. You will develop a bit of a tolerance, but many people have taken it for years with no change in dosage. It's a totally different class of drug than Tegretol. There are still potential side effects, so it's a good idea to be familiar with them by asking for the product insert at the pharmacy.

In the meantime while you're waiting to see the specialist, you might want to try the amino acid L-Taurine. I hear from people who say it is helping them. The dose is 1-2 grams per day (which would be 2-4 capsules). It's very safe and acts like a membrane stabilizer without the side effects. The medical research was done in Italy. You can find it at most health food stores.

Jan

Type of Myotonia: Thomsen's

Country: US

Re: Medications

Thanks for replying!
I had no idea that tegretol could have such a big effect on people! I am defiantly never going to try that again! And after your reply I think I am going to try mexiletine as I really am beginning to struggle. Meanwhile, I'm going to look for that amino acid L-Taurine you recommended as it sounds good and may take the edge off. Thank you!
Paige (beckers)

Type of Myotonia: beckers

Re: Medications

Hi Paige,
I have been on mexillitiine for quite a while, coming up on 11 years or so(I'm 19 now). As a child I didn't notice anything major except for relief, but now that I'm older I really see the effects it has. I do fatigue quicker than the average person, but with proper exercise and diet it can be improved greatly. As for school, I found it didn't have any effect on my studies, unless I missed doses cause then I had a hard time functioning. I am currently in university going for a engineering degree. The one thing I do want to give caution about from experience, I am completely dependent on this drug for everything I do and would advise to try and learn to live with myotonia instead of using medications.

There are many side affects, luckily I didn't experience much of them which made this one a great choice. I did a quick search on the one I use, mexiletine HCL, http://www.rxlist.com/mexitil-drug/side-effects-interactions.htm. This does have a lot of info that can give you some answers that you may be looking for. Thanks for reading.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

hello!
Thanks for replying! I'm very interested that you have been on it for 11 years and it's still working (not that I have very much experience when it comes to medication haha). I was wondering what you mean by "dependent" on the medicine- can you cope daily without it? It's just that my parents and I are quite worried about completely relying on something as they ideally would like me to live without medication, however I feel my MC is too strong to live with on a day-to-day basis.
However, I think I am going to try it as you said it offers relief. And thank you for the link, I'll look at it now.
Paige (beckers)

Type of Myotonia: beckers

Re: Medications

By dependent I mean that if I go off of it for even a day I start getting stiffer(as expected) but after two or three days I literally cannot get out of bed without fighting every muscle in my body. It feels like I am even stiffer than what is was before I went on the medication, but that might must be because I haven't felt that way for long periods for 11 years. I cannot live without this drug unless I were to spend a lot of time off of it trying to get used to how my body reacts and how sevre those reactions are.

I do understand you wanting to try it cause your mc is too strong. Talk to your parents about it and let them know you want to try this.
One other thing I have noticed is that, when I started I took 1 dose(1 pill) each day. Now I take up to 8 doses because my body is getting used to the medication and I still have stiffness lingering all the time.

I hope I could help.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

You younger people with beckers are truly blessed at haveing Mexilatine as an option,I'm shure there will be better meds soon so why suffer for no reason as long as Mexilatine is available, and safely works for you! If I only had the option when I was young I maybe could have finished college...I started Mexilatine at age forty and stopped by my neurologist because of my kidney stones,my other option was predisone at 5 mg per day it worked great and then came all the side effects, now I'm hooked on sleeping pills and happy to be back on Mexilatine,the only side effect I have is blurred vison...

Type of Myotonia: Beckers

Country: USA

Re: Medications

That made me laugh a little bit. Not your story, but that we are blessed.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

Blessed for having Mexilatine available or four leaf Luckey!

Type of Myotonia: Beckers

Country: USA

Re: Medications

I would say blessed. We have restricted functionality with our bodies. Many people out there have NO functionality with their bodies, or even ailments that cause death! I thank God daily for only having MC. When I was first diagnosed, it was myotonic dystrophy, which would have been a lot worse. I, for one, feel pretty blessed! Stay strong, and keep faith!

Country: US

Re: Medications

I definitely agree with you both. It could be much worse.

Type of Myotonia: Thomsen

Country: Canada

Re: Medications

Hi Paige

I have been on Mex for about ten years now and I too am completely reliant on it. I am 25 now and have been on the same dose since I was 15. However, my brothers both have Beckers too and there doses have increased over the years. If I go a day without it I am completely stiff the next day but while on it I would say I am 95% 'normal' functioning. I notice too if I am active the day I miss a dose ( I do a lot of warming up first) that the next day my muscles are very sore.

I too have been worried over the years that this drug is too strong to be taking daily. I've read negative comments about heart damage from various places, however you cannot believe everything you read on the Internet. My brothers and I go once a year to see our specialist and get our prescription renewed and I asked a few years ago to have our hearts checked out because I was worried. We had heart monitors on for 24hours and the results came back completely normal. I check my blood pressure often and it too is normal.

Hope this helps!

Type of Myotonia: Beckers

Country: Canada