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Re: Starting Flecainide

Correction to my previous message: I've been now 1-2 weeks on 2 x 100mg per day. :)

Type of Myotonia: Becker's

Country: Finland

Re: Starting Flecainide

Well good news, my doctor has agreed to me increasing the dosage to 2 x 50mg a day.

I have to go back for an ECG next month to make sure that the Flecainiade is not damaging my heart but so far the signs are good, managed Mexitil for several years without a problem.

The only concern I have is that my myotonic symptoms were really bad on Thursday morning, which may have been linked to the level of anxiety I was feeling, but I've also noticed a return of the muscle weakness that was so noticeable before I started this drug.

Hopefully i was just having a 'bad MC day'!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Another update.

I seem to have stabilised now, no side-effects as far as I can tell.

The myotonic symptoms are still present but much reduced making life that much better. I do struggle on days when the MC is particularly bad, and the distal weakness keeps coming back, but my neurologist is wary about increasing the dosage too much because of the possilbe damage it can do to my heart; especially as we are looking at this as a long-term treatment.

I'm happy just to have some relief at the moment though.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

hi heini, I am taking flecainide 300gm per day and in days I increase it to 400 gm per day, but it caused me a flurt vision, so i stopped it and got exitil again from canda

Type of Myotonia: Congenita

Country: Egypt

Re: Starting Flecainide

Did you find anything that helped the visual disturbances? I get them too even at 100mg and it would be good to find a way to stop them.

Re: Starting Flecainide

I still get the problem with the vision, but not too much. The vertigo seems to have eased as well.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

I have noticed that the MC is still dominant in many situations, especially those where I have to move suddenly or when under stress.

The Flecainide does not seem to be that efficient in this respect.

At 2 x 50mg the myotonic symptoms are much reduced but clearly they have not gone altogether and it seems pretty easy for them to worsen in the wrong situation. I'm also still having bad MC days, but then I did when using Mexitil as well.

Nevertheless, I'm still glad to be using this drug; some relief is better than none!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

It's frustrating that Mexiletine HCL is available in countries like Hungary, Romania, Serbia, etc but not in England! Is there any way you can get Ritalmex through your pharmacy? It's made in Hungary by ICN Pharmaceuticals.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Starting Flecainide

Only if my doctor agrees to prescribe it, for now he wants to concentrate on the Flecainide.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Hi Pete,

is there any chance your doctor would agree to increase the dosage? I'm now taking 2x100mg in the morning and 1x100mg in the afternoon, and with this dosage I think Tambocor is working almost as well as Mexiletine. When I was on lower dosage, I had significant problems with moving around, althoug I still could tell that my feeling was not as bad as without any drugs. This is however the largest dosage I can take without having visuality problems.

Here's a link to Google Translated German study that says it is ok to have at least 2x100mg daily. I printed this out and showed to my doctor, and he appreciated it.

http://translate.google.com/translate?sl=de&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fmyotonia.de%2Fstartseite%2F82-neue-myotonie-medikation-alternative-zu-mexitil

Take care!

Type of Myotonia: Becker's

Country: Finland

Re: Starting Flecainide

Hello Heini,

Raising the dosage is always a possibility. I a review scheduled for a few months time when we will discuss this problem.

My doctor is aware that this is very much a trial, neither of us know if it is going to be the answer. Of course with Flecainide being a heart drug there is always the danger of damaging my own heart and that is something I wish to avoid.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

One of the definite benefits of Mexitil was that it reduced the instance of cramp that I suffered. I experienced some pretty bad attacks of cramp and seizures previously so the few years I had on Mexitil was a real relief.

Immediately I started Flecainide the cramp receeded but now it has started to return. I have experienced cramp in both my left and right side of my torso seperately. The most troubling aspect, however, is that I do not seem to have done anything to provoke the cramp. In one instance I was simply sat still, in another I was gently pushing an empty shopping trolly. There was no strenuous activity whatsoever, but the cramp certainly hurt.

I'm not giving up on the Flecainide yet, not least because it is still reducing my myotonic symptoms, I'm just noting that it is not a cure, which I suppose was to be expected.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Hello, In Romania we do not have Ritalmex. I found it for my mother only in Hungary.

Anca

Country: Romania

Re: Starting Flecainide

It is a problem that some drugs are available in one country but not another.

I am quite happy with the Flecainide now. It has not suppressed all of the myotonic symptoms, I still have to be careful to avoid trips, cramps, etc., and I still get occassional bouts of vertigo.

I think that without this drug I would have really struggled to get through my last bout of surgery so I reckon that I will be using it for many years to come yet.

Type of Myotonia: Becker's

Country: England