Help with Atrial Fibrillation and medications for it

[Schmidt]

I am currently here (writing this on this forum) because I have been searching more information about a drug that has been prescribed to me called Etizolam and I thought that I could help my case more if I would talk to somebody else who has more experience than I do. so well, the thing is that my cardiologist has prescribed this medication to me for my anxiety that it is caused by my AF (which stands for Atrial Fibrillation). So well, in all this time that I have been a member around here on the forum, I have learned one thing from reading other people’s posts that seems very good and it is that I often we should question the medical professionals decisions because even though they are professionals, they are often wrong. I am being prescribed now Disopyramide (been told to take 150 mg in 3 different doses of 50 mg every single day), I also take verapamil (120 mg also in 3 doses every day), bisoprolol 2.5 taken once a day and lately rivaxoban of 15 mg every day. so well, I have started to do my own research by contacting the company that it is being based in France that first research and patented Disopyramide to get an up to date patient information leaflet. So well, the interesting thing is that when I’ve called them they told me that the minimum clinically effective dosage it is (this is according to their own research) 300 mg over the course of 24 hours with their recommended starting dosage at 100 mg to be used every 6 hours. so well, this would be 400 mg to be used every day. taking this in consideration then I want to ask… why the heck then I am now put on a dose that it is considered to be half of the clinically effective minimum?

 

So well, fortunately, I did found a very good and seemingly legitimate source for seemingly legitimate medications that are supplying the exact same medications that I am being prescribed by the doctor. when I am going to have my next visit with my doctor I am going to show him my letter that I have got and I am going to ask him point black as to why the heck he has prescribed me such a small dosage because according to the company who produces them – the dose would be totally ineffective.

 

Lately here, I need to mention the fact that he did agree not so long ago to up my dosage to 200, however then he has stated (after about 2 weeks, because I had my schedule exactly 14 days later with him) that he would want my dosage to be reduced to 150 mg of it once again. I did have asked him why he wants to do so then and he has told me that it is due to the fact that he does not want to suppress the activity in my heart.

 

What are you thinking about all of this? and yeah, also taking in consideration that in the mean time, I am also having daily bouts of AF with my heart rate being 130 bpm. I mean… I am sorry… I am definitely not an doctor and I do know that I can’t help me more than my doctor do… however… I am just thinking that my heart rate needs to be stopped a little bit ‘cuz it races too fast. I do know very well that 130 bpm should be stopped a bit more. is there anybody who can help a bit ?

 

[Turitch]

Are you talking about doctors and prescribing? Wow, they are mystifying me! and WOW! 130 bpm that’s a lot… excuse me in case I sound ignorant, but I just need to ask you: what does this feel like?! I mean… what kind of symptoms does it produce to you?? I am quite sure there must be some symptoms. Again, apologies but.. are you able to normally function (do anything at all) when this is happening or not? I really wish you the best and I hope that you are going to sort this out with your *super* doctor. regards!

 

[Schmidt]

Regarding your question about what does it feels like and if I can do anything… so, it does feel like I am having a fish flopping around in my chest when it is outside the water and it flops like that like crazy. That’s what it feels like. But yeah, it seems that I have already found out what they are prescribing those medications so low… the insurance companies are dictating the maximum doses that they are going to pay for each of the drug for each of the conditions  which means that it doesn’t really matter what my doctor wants, he would give me only that he wants (unless I am going to pay myself for more). the thing is that I’ve called my doctor and he has told me that my insurance is not going to cover any more than 300 mg of it per day and in case I do want to get anything more than that then I would need to pay out of my pocket at market rates, which by the way (and I guess you all already know it) it is very and very expensive! Therefore I was right when I was feeling that I should be ordering online. now I now that I am going to be sourcing the medications that I need online. damn insurance companies and their freaking plans.

 

And yeah that, I honestly think that there are a lot of us who share this, I am honestly pissed off due to the fact that my health it is a commodity subject to the pressures of profit and loss. But yeah.. who cares about my health? Who cares about other people? everybody cares about money only and lately people more often starting valuating people’s lives even though they are priceless…

 

[ninaflemming]

This doesn’t save your doctor from being an @sshole! By doing whatever he was doing he was simply not helping you while he should, he’s a doctor god dammit! He should have explained all of that very carefully from the very beginning in case you wanted to pay that extra money. but he decided it for yourself. And I am quite sure that since he’s a doctor, he knew that the dosage he gives to you won’t help. why the heck he still gave it to you indeed!? Besides, he might have searched (since, again, he’s presumingly a doctor) maybe there is a similar but cheaper drug that you could take? So you would pay out of pocket only a bit but that would make the change that would help. wouldn’t you agree with that? and I am quite sure that there are lots of other scenarios that your doctor might have done and helped you if he really wanted to. anyway, I just think that it might be worth considering going to another doctor who is going to be upfront with you about his prescribing decisions  because… after all, that’s your health and your life! maybe it would be a good idea to go and see a heart specialist? Whatever, I consider that a new doctor might be a good idea!

 

[Bedeencion1980]

Schmidt, even though there are a lot of us especially here on this specific site who do self medicate… changing doses on a heart medicine without a medical consultation with a professional doctor really sounds to be one very dangerous thing and I guess I can say most dangerous when talking about self medication. Although perhaps I misunderstood something? which I am sorry if I did.

 

But yeah, if I would be you then surely I would have the most honest talk with the doctor that you are currently visiting about the fact of why is he making the choices that you should be making? Why he makes some decisions without at least announcing you? I honestly can’t believe that he would give at least a **** about what you would have to pay out of your pocket. As if he would pay for them himself. It really seems to me like we are very often here just hearing the opposite happening when there are a lot of posters that are taking their prescriptions to the pharmacy.

 

Anyway, yeah, it is true and I do know that very often there are lots of doctors who are deciding not to tell us what it is really going on with us and as for some still unknown reason for me, they are not thinking that we are having this *special* ability to understand and not even talking about that we could even be helpful. whatever the case… you really deserve to understand and trust me that I am having absolutely no doubts in the fact that you surely can understand it (especially after you’ve already understood lots of things, something I assumed by reading your original post) and you can even be helpful. but I think that you can understand even better but only if he would help you, if he would take his *extremely precious time* and explain it all to you normally.

 

But yeah… since your faith in this doctor is currently shaken or maybe even at the lowest level (because people are different and get things in different ways), if I would be you I would surely go and get a second opinion about this situation… especially because I wouldn’t be playing around or accept any mistakes regarding my heart… and yeah, as it has been recommended by ninaflemming, it is preferable that you go and see a heart specialist! I wish you all the best!

 

[Schmidt]

I do realize that very well Bedeencion1980. Just thanks for saying it one more time.  But what options here I am having (and by the way I am living in Japan currently) taking in consideration that they restricted by the health insurance companies to how much they are prescribing?! In the UK, the national institute of clinical excellence is suggesting to start a dose of 300 mg per day while the pharmaceutical company that is producing the drug is telling that the 300 mg it is the minimum clinically effective dose (again, according to their own research) and they are recommending to start off with 100 mg taken every 6 hours and this would be, as I said, 400 mg of it per day, instead of 300.

 

And yeah, something more is that it is not the fact like I am simply begging for the heart pills only for the sake of it, it is obvious that I would want to take the less as possible or nothing at all, however atrial fibrillation is completely debilitating! I really NEED to work and I would most likely get fired from this company if my employer would discover the truth about my condition, something I definitely wouldn’t want to happen. Also, luckily, so far, having had this condition of AF on 40 work days these last months – I still have not missed one single day and that’s good, but I just have to keep it this way and I am scarred that it would get worse and I would start missing, which, again, I wouldn’t want to happen because it would lead to the same end – getting fired.

 

I have to say that my aim it is to keep this AF under control at least a few more months because then I am going to have a pulmonary vein isolation radio frequency ablation and I am really hoping very much that this is going to fix the short circuit…

 

And yeah, I am not simply self medicating here (because I do agree with you Bedeencion1980 that it can be dangerous, as I said, I do understand it very well), but I am following with care the guidelines that are being given for the drug from both the UK and the USA (and I assume this does mean something). and also, even though the Japanese medical aid it is really first class, I still cannot understand who the pharma companies and their insurance puppets controlling things like until yesterday.

 

But yeah, I have visited my doctor today once again and I have told about what I have found out again and based on that information, he has agreed to trial me on the minimum/ starting dosage (which is in the USA and UK) but it is the maximum dose here in the Japan (although everything points to the fact that it is minimum since as I said, drug manufacturer itself says the same as USA and UK).

 

Anyway, we would see what’s going to happen, but one sure thing is that I am not going blind through all of this, I am researching absolutely everything I can about everything. About AF, about every drug given to me, their doses, possible side effects, reading stories about people already taking these drugs and so on and so forth!

 

[Workman]

Hi Schmidt. I am honestly so so sorry if your AF it is disabling you or even if it’s making you only to feel uncomfortable. Whichever the case, it should be taken care of no doubts, especially as it has been said – when it comes to your heat.

 

It is one sure thing that this really needs to be changed and addressed, however I do agree with other people saying that absolutely under no circumstances at all you should be using it on your own without any doctors help (or at least a second opinion). this really can be dangerous and I wouldn’t risk because something can go wrong any minute and that might be enough. Just nothing in there that dosage adjustments are sometimes necessary with the concomitant antiarrhythmic therapy (which you are on).

 

The dosages are being based (at least in a part) on liver and/or in your kidneys and function tests or even anticipation of changes in these 2, considering the metabolism of combinations of medications. should your doctor raise your disopyramide dose, as you are sure that he should, he would also need (again, he would NEED) to monitor you even more closely for the first degree heart block, that it is no small matter. I do understand you as well, but you can’t simply play around with heart medicines or fatal outcome might occur… just think it over and please… stay safe, do not try to do anything on your own like that.

 

[Suffes]

Hello Schmidt, just wanted to chime in saying that I do perfectly understand why you are frustrated and I think that anybody else would be frustrated as well. and I also agree with the fact that getting a second opinion might be in order either, however... unfortunately or not but Workman is indeed right on what he said up there… increasing the dose of a drug, especially a drug like Disopyramide, which is reducing the contractile force of heart, really could lead to heart failure and therefore to death. Therefore he’s right, the more the dosage the more and close you should be monitored and the more tests should be done. indeed we are not the most stupid people here and we can understand a lot of things, however this combination of medications is complicated enough for even a very well trained Cardiologist or electro Cardiologist… just imagine that it is much less for the rest of us. Having this said, when talking about these drugs and upping their dosages, we should take extreme care and that’s why… all I can say here is… please, do take great care! I wish you to be well and safe and hope you’ll get it all fixed!

 

[Wassiriour]

Schmidt, I wanted to ask you… have they tried you on the flecainide? I would say that you should do it if they haven't. there's an relative of mine who has suffered from the Atrial Fibrilation as well most of her entire adult life and this is the only drug that is able to stop the ""heart do's"" - this is the way she is calling them.

 

but I see that you are living in Japan and I am not very sure if that medication is available or not there and I also don't know how it is going to interact with your benzo intake. however I thought that it could be worth mentioning this to you so maybe you would benefit. I am just her friend, but I can tell you that IMO, those heart episodes are really that scary and something should be done about it.