I've experienced some side-effects, nausea, headaches, and vertigo; all listed as being caused by Flecainide. Fortunately the symptoms have not been too severe, just unpleasant.
I see my doctor at the end of the month and I'm hoping that he will increase the dosage from 1 x 50mg to 2 x 50mg per day; I feel that this would be a real benefit to me.
By the way Heini, your English is much better than my Finnish!
So far the trial has gone well. I do not think that 1 x 50mg is enough, however. I have noticed the MC creeping back into my muscles from late afternoon onwards. It is very evident in a morning when I get out of bed.
The side effects have been manageable, mostly vertigo.
I don't feel 'normal' using Flecainide, but I do feel better than when I had nothing.
I also feel very relieved that I was able to find a drug to take the place of Mexitil so soon.
Hi Peter, happy to hear that you're feeling positive :)
I've been now a week or so with 2 x 50mg. It is way better ! Although I'm still thinking of trying a little bigger dose. I'm also very happy that at least so far Flecainide seems to be very potential replacement to me too :)
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.
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.
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
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!
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.
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.
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.
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.
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.