Return to Website

Myotonia Congenita Forum

 

This forum has been closed for comments.  You can still search archived messages.

 

Visit  the Non-Dystrophic Myotonias  Facebook Group

Myotonia Congenita Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Starting Flecainide

Pete, until you can start the Flecainide you might want to take some licorice root extract. A few capsules a day would probably give you some relief. The only contraindication is high blood pressure. It acts as a diuretic to get rid of extra potassium. It works very well for me.

This is the herbal preparation, not candy. You would get it from a pharmacy or health food store. I get a brand that has standardized potency. It tastes sweet, nothing like the strong licorice flavor that is added to foods and drinks. Some people make a tea with it.

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Starting Flecainide

Thanks Jan, I'll try that!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Hi Pete :)

I'm also on the same boat. After years in Mexiletine, I started Flecainide (Tambocor) yesterday. At first my doze is 2 x 50mg / day, but as my symptoms are so severe, it doesn't seem to help that much. But I'm still feeling positive: overall the feeling is a bit better than with no medication.

I used to take 600mg Mexiletine daily, so according to Frank Lehmann-Horn and Karin Jurkat-Rott, my flecainide doze could be at least 2 x 100mg / day. I'm going to the electrocardiogram in a week, so after that I think I get the permission to raise the doze.

Good luck to you Pete!

Type of Myotonia: Beckers

Country: Finland

Re: Starting Flecainide

Hello Heini,

I had an ECG before my doctor prescribed the Flecainide, everything looks good. I hope yours goes well.

I'm starting on a low dosage too, mainly because of it being a heart drug, but I will be allowed to increase the dosage if it does not seem to be helping. I have an appointment to see my doctor again 3 weeks after I commence the drug where we'll discuss how it's working.

I'd be interested to hear how you are getting on with it.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

hello peter, what is the ECG please

Type of Myotonia: Congenita

Country: Egypt

Re: Starting Flecainide

Hello Ahmed,

an ECG is an electrocardiogram, just shortened for easier use. It is a test that measures your heart and reveals if it has any problems. In England this is necessary if your doctor is about to put you onto a drug that is meant to work on the heart, it makes sure that you are fit to handle the drug without causing further problems to your heart.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

I took my first dose today, 1 x 50mg.

So far so good with reduced myotonic symptoms and no distal weakness.

I experienced a littel vertigo to begin with but that seems to have gone now.

I know from past experience that it will take several days before I can gain a real picture of the beenfits that this drug might give me but it seems to have gotten off to a promising start.

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Hi Pete, happy to hear that.

I have now been 3-4 weeks on 2x50mg of Flecainide daily. I do think helps a little, but it has been really hard weeks now, as I can't function normally in my everyday life. For example getting out of the car takes about 1-3 minutes, and using public transportation is scary as I can't really cope that either. What's the worst is that at the moment myotonia affects on my speaking also... well, hoping to get help when I can start taking more medicine :)

My cardiologist has not yet given me permission to take more flecainide, I'm hoping to get a permission after I meet him next Friday. I've had a couple of ECG's that had no reasons to worry, so everything should be ok.

Type of Myotonia: Beckers

Country: Finland

Re: Starting Flecainide

Heini,

Sorry to hear that you are not responding to the Flecainide as well as could be hoped.

My symptoms before yesterday were as bad as yours, I was really struggling, but since starting with the Flecainide I have definitely improved; even on 1 x 50mg. It is not perfect but it is so much better.

However, I've had this before with other drugs that I've trialled, they got off to a good start but then the side-effects started and in some instances the drug started to be less effective against the myotonia. Today is only my second day so I'm not going to build my hopes up too much.

I did notice that my myotonia came back as yesterday wore on and that when I woke up this morning I was a bit slow getting out of bed. It maybe that 1 x 50mg is not enough but that is just something else that I'll have to wait to find out.

I hope your doctor can help you find the right dose so that it improves your situation!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

Hi Pete!

I gotta correct my sayings a bit: I think I'm responding to the medication ok, but 2 x 50mg is not nearly enough. When I was without even this small amount of Flecainide, I was even worse condition than I am now. I can clearly feel the effect of Flecainide to fade if I forget to take my second 50mg during a day. So, I'm still very hopeful and looking forward bigger doze :) Luckily no side effects at all so far, so I'm feeling very positive.

Type of Myotonia: Becker's

Country: Finland

Re: Starting Flecainide

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!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

On Thursday I'm going to see my neurologist.

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.

More after I have seen the doctor!

Type of Myotonia: Becker's

Country: England

Re: Starting Flecainide

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 :)

Type of Myotonia: Becker's

Country: Finland

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