Well I did call the hospital and spoke with the Arrhythmia nurse.....Who knew such a person existed? I found him very good and easy to talk with though a little confusing. He says that my EP never prescribes Flecanide X 3 times a day. It's not covered by the license he says. The other confusing thing is he says you can take up to 400mgs a day!!.... I did speak with him again yesterday and he said it's ok under supervision with the hospital and GP to up the dose to 350 or 400mgs a day. He has told me to take 200mgs of Flec at night and 150 in the morning. 12 hrs apart. It feels like an awful lot of Flecanide!! Since I upped it from 200 to 300 recently my eyes are stinging and I'm a bit groggy all the time.
He asked me what I thought was driving my AFib. Without hesitation I said Anxiety. (I don't eat or drink any of the other triggers anymore) We spoke about this in a way I've never been able to with my consultant or with my GP. He explained that if I wasn't addressing my anxiety it didn't matter how much Flecanide I took. The root cause needs to be addressed as in I may need to take antidepressant /anxiety medication. This made sense to me. I have been trying to avoid taking them. But now that my heart feels so battered and my Meds are having to go up anyway, I'm seriously considering taking them. This anxiety is very physical and existential. Sitting and talking with a therapist, I know won't help. I've done a lot of it in the past. I'm aware that I am dealing with a lot of childhood trauma. I'm sure I'm not the only person on here who is. Old Trauma can be lodged in the cells. Or in the heart. Old pain and hurt.
I had 2 bouts of AFib recently which was why I contacted the hospital. For 2 hours last Friday and for 4 hrs yesterday morning. Am feeling very weak as a result with a bruised pain in my chest after it.. I took 200mgs last night and will take 150 later. It's good to know that this nurse is there and I have his phone number to call him at work anytime. I'd advise anyone else on here to find out if there's an AFib nurse at their hospital that they can speak with as it can be very helpful. I'm attending my EP for 7yrs now and this is the first time I knew I could have access to such a nurse.
Onward fellow AFibers! Do what ever it takes to distract from the scary news out there and to build your self confidence to get through this winter.
Thank you for reading this.
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RajaRua
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I've always found AF nurses really knowledgeable and helpful. Any hospital that performs cardioversions or ablations will have them. You just ring the hospital switchboard and say can I speak to one of your AF nurses please.
Note, you can only do this if you've recently had an AF heart procedure carried out at the hospital.
Thanks Jean, Well my name is down on a waiting list for an ablation but in the present circumstances I don't know when that'll be. Yes was taken aback that a nurse could up my meds like that. Not sure if he consulted with my EP. I would've thought so..... He told me he's highly trained in Arrhythmias..... Thank you for your care and understanding Jean.
That sounds like good and proper care Hylda. I'm in the public care system and I'm only too aware that private patients here in Ireland are afforded lot better care. The more I read on here the more apparent that is. I'm in Ireland and was a nurse for a good portion of my life in London in the 70's 80's and 90's. The care was very good even in the public system (NHS) during that time.
I too am with the NHS here in England. But, I feel I am the only one responsible for my health and it is up to me to keep pushing for what I feel I need.
I don't agree Hylda. It's the duty of the doctors to help and reassure their patients and to explain whatever needs to be explained re their condition and the medication they prescribe. It's also the duty of the doctors to know what their prescribing and if there are contraindications for this medication. I have found it so stressful over the last week having to call various people including a pharmacist to find out about medication and doses. I really shouldn't have to do this. I'm on my own and we are in the middle of a Pandemic. It's been terrifying. When I questioned the dosage of Flecanide I was told that's how your EP works.... Not good enough!
Thanks for helping me get all that off my chest. I remember the NHS as being so patient centered. I hope there's some semblance of that left. You shouldn't have to 'push for whatever you feel you need.' But if you have the strength to do that and need to do that go for it. I'm not feeling that strong.
What a time you're having, really feel for you. That does seem to be a lot of Flecainide to be taking, but perhaps it will only be short term. Are you waiting for an ablation?
I don't know if this will help, but I've been told by my Electro-physiologist, and I've also read a bunch of research, that Flecainide should not be more than 300 mg in a 24-hour period--for me, this means 150 mg every 12 hours. The specialists can "fudge" this by adhering to the "24 hour period" recommendation--somehow, it all boils down to mathematics, I guess.
ALSO, if you are a FEMALE (of any age), there is an issue with taking doses of Flecainide if you weigh under 155 lbs. I can't recall the specifics of the dosage, but one of my friends landed in the Intensive Care Unit for at least a week due to a major reaction to her increasing her dosage, because she was advised to increase her Flecainide, but the doctor who told her to do this, did not ask her weight. She found out about this very serious thing after the fact!
I totally understand about stress and anxiety! I've tried breathing exercises, meditation, prayer (part of my daily routine is to pray), etc and really, I've found that a pharmaceutical works better--but I've been afraid to take it since my diagnosis.
Thank you Doggiemama, What does DX stand for please? Yes I'm female and now more anxious than ever re this amount of Flecanide. I'm tall and about 180lbs. I'm calling the hospital again later this morning. Even before I read your answer I've been feeling afraid about this amount of Flecanide. I have also read it everywhere that over 300mgs is dangerous. I get so many awful symptoms with AFib that I just did what he told me. I am left so shaken by it afterwards with a very painful chest and mid back and utter exhaustion. I can't even speak too much for a week afterwards.
The last time I spoke with a doctor at the hospital on the phone as no face to face re covid (end of Sept) he encouraged me to book in for an Ablation. But the waiting list is 2 yrs! I also suffer with Fibromyalgia and this also contributes to anxiety and depression. Not to mention the pain all over my body. Having been a nurse I know what an Ablation entails. I've never seen or nursed one but I get the picture just reading about it and it terrifies me.
I'm also praying a lot and trying to meditate again. I've done a lot of meditation and Yoga in the past but I'm so agitated now it's difficult to calm my system. I think what this nurse wants is to keep me out of AFib til the anxiety/depression meds work. I do see what he means Flecanide not working if I'm not treating the anxiety. I'm going to talk to my GP this morning. She's been wanting me to go on them but I've been so wanting to stay away from these meds again in fear of more chemicals messing with my brain.
I do feel since starting on Flecanide in Sept 2013 my brain hasn't been the same. With this extra 150mgs I feel very toxic and even more anxious. And all in the middle of this pandemic....and alone.
I think DX stands for diagnosis? Why are you afraid to take Pharmacuticals with your AFib daignosis? I asked the nurse re potential interactions with anti depressants and Flecanide and and also Valsarton which I take for BP and his answer was absolutely none.
I'm sorry for such a long reply. I really appreciate your help and care Doggie mama.. I'm a cat Mama! <3
DX stands for diagnosis. I'll edit my post. Thanks for asking for clarification!
As for your question "Why are you afraid to take Pharmacuticals with your AFib diagnosis?" -- as you noted, taking more meds means more chemicals affecting me and my brain.
As for anyone's dose of Flecainide, you can request a serum blood test, as a baseline, for the Flecainide as I think this would be one way of monitoring potentially toxic levels.
I am absolutely horrified that the nurse thinks there is no interactions between Flecainide and antidepressants.
I don't know what your age is but if you are over 60 then Flecainide at 200mg pd can be too much as it is not absorbed fully and can accumulate to toxic levels. This can cause bad arrhythmias when the QT interval is prolonged by this drug if used excessively.
Now if you take Sertraline or Lorazopan or any antidepressants or anti anxiety together with Flecainide you have a toxic soup in your veins that can lead to LQTS and TdP and sudden (very bad thing).
I'm 64 Palpman and female. I don't understand all the QT, LQTS and TDP I'm not versed in this. I do feel quite Toxic. Had a talk with my GP and she said that Nurses like this guy are called Super nurses and this is the way things are going in Cardiology...here in Ireland anyway. It may because of Covid and being so busy? I'm 180lbs. I'll see if I can get up the courage to look up the above initials. Are you a medical person or have you educated yourself? I admire all of you on here who have educated yourselves so well And Thank you. I'm hoping to talk to another cardiology nurse later today. I don't know if I can dare to pare back my flecanide in case I go into AFib again...... If I don't do something about my anxiety I'll be getting more AFib alos. And the last thing I need is to be hospitalized!
Thank you for your input and any other thoughts and advice would be accepted.
Each QRS is a wave on the ECG that represents the action of the ventricles when they have one pump action.
The T wave is the repolarization of the ventricles or "resetting" wave to get a zero potential for the start of the next cycle.
QT is the distance between the start of the ventricles QRS pump action/wave and the start of the repolarization wave at T.
If this is long (500ms +) then it is called Long QT Syndrome or LQTS.
LQTS can precipitate into a dangerous arrhythmia of the ventricles called Torsades do Pointes (TdP) or Ventricular Tachycardia and sudden death.
Flecainide antiarrhythmic drug taken together with most drugs starting with "anti" can cause LQTS. Most prominent are antidepressants, antibiotics and anti anxiety drugs.
I was a part time paramedic on the gold mines so only dealt with miner injuries. The drugs and QT stuff I taught myself as it concerns my own health.
Thank you Palpman. I've tried to talk to a doc on my EP's team but not available. I'm to call back in the morning to speak to same nurse. The medical secretary says he works side by side with my EP and is an Advanced Nurse practitioner in Arrhythmias. ... So my EP actually knows I'm on this high a dose. It must be his way of working with Afib....Could it be becasue I'm tall and 180lbs that my EP thinks I can handle this high dose? This the EP that would be doing an Ablation on me.....I always feel it's so important to be able to trust your doctor and or surgeon.... God help me please!
I also called my local Pharmacist and he said to get hold of my EP urgently as this dose (350mgs) was dangerously high. He also wouldn't recommend taking an SSRI along with Flecanide. What a terrible position to be in. The one time you need to trust your doctors or nurses and this is what is happening! It's adding ++ to the anxiety. The pharmacist did say that taking a low dose of Xanax would not hurt my heart along with Flecanide..... I have some Xanax which I only take if absolutely neccessary . A month's supply lasts me for over a year. But I'm aware it is addictive and don't want or need that!
I'm waiting for one more call from another Cardiology nurse at my GP's surgery. But not sure she'll be getting back to me. I've slept most of the afternoon as awake since 5am. My eyes are burning which I feel is a sign of toxicity.
Thank you so much for your explanations and help.
I was a nurse for years and loved my job. I was a born carer, but had to stop because of stress. I suffer from PTSD in fact. But have managed to stay away from all Psych meds til now. I wish I was in a position to help out at the moment in this awful time of Covid but I wouldn't be able now!
It does get better as the right level of meds and other lifestyle measures take effect. Firstly from what I have read here over 5 years, I wouldn't take more than 300mgs Flecainide without a very convincing accompanying talk from an experienced cardiologist. My cardiologist recommended taking even doses am & pm.
I was very anxious and borderline depressive at the start and now (6yrs later) whilst still on 200mgs Flecainide my Quality of Life is hugely better. To overcome my anxiety, what I did was throw everything I knew at it.......reduced business & personal stress, changes to what I eat & when, no alcohol, carbonated drinks, reduced caffeine, gluten and sugar very substantially, comedy programmes substituted for late night crime dramas, mile walks in the countryside twice a day, Mindfulness, prayer and breathing exercises - the latter has recently been very beneficial for my sleep and energy levels; if you google Patrick McKewan who lives in Ireland and James Nestor's new book Breath you will see what can be done.
I could go on but I think you get the picture, very best wishes!
Hi secondtry, I'm so sorry I haven't replied to your message. All very helpful suggestions. Thank you so much. When you say no carbonated drinks is it the carbonation or the sugar in the drinks that you are avoiding? I drink sparkling water quite a bit.....do you think that's a trigger. I'm off all sugar, alcohol, gluten, caffeine. I suffer with worry and anxiety. I also suffer with Fibromyalgia which doesn't help. Must look up James Nestor's book Breath. Apologies for not getting back to you before this. Life has and is very Topsie turvsie these days.
Sugar is a problem but also carbonation, I drink still water now. If my memory serves me right, this is particularly important if your Vagus Nerve (likely in my case) is part of the AF issue as the fizz contributes to pressure on it particularly when taken with a meal. Yes do get JN's new book 'Breath', it can help much more than your AF. I am hugely excited by it and have already benefited with the breathing exercises and mouth tape at night, here he is being interviewed youtube.com/watch?v=woyIhwo...
I want to correct my post above where I stated that Lorazopan and other anti anxiety drugs can increase QT. This is not correct as I see MEDSCAPE has now given them an all clear green flag. It was orange as more data was needed.
I am long term on xanax (Lorazopan) 0.5mg with 200mg Flecainide per day with no problems. They are anti anxiety drugs.
I had to stop Sertraline (antidepressant) as my QT was getting too long at 480ms.
You are far to stressed out. I can tell by your fear.
Most of us look forward to having an ablation. I am scared of it as I am of a haircut. My biggest concern about the ablation is having to shave.
Please be very careful of how much Flecainide you take. It can also be a pro arrhythmia drug. My dose was upped at Christmas. In January I ended up in a&e with a life threatening VT episode almost causing a cardiac arrest. I had to have an emergency cardioversion and a 2 week hospital stay. This was directly due to Flecainide. It is very powerful and needs careful monitoring.
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Update to previous post re : AF
Ablation update and some good news re our NHS
New AF episode - first time with flecanide
Memory issues bisoporol , flecanide and Part time Af 
Ectopic Beats and Afib recurrence
