I've previously posted a theory about why my post-ablation side effects of flecainide persisted long after I stopped taking the drug. The primary symptoms are dizziness, fatigue (like having the flu), dry mouth, bleary and heavy eyes, shortness of breath, and a few other delicacies. They continue, though not as severe (i.e., disabling) as during the summer.
The theory goes like this:
One of flecainide's effects is to suppress the brain's immune system, which is why it's sometimes given to people with multiple sclerosis. I may have a long-standing spirochetal infection that the immune system has kept under control. With the immune cells deactivated, this invader - rather than the flecainide - may have caused the side effects. With the flecainide out of my bloodstream, my brain's immune system responded by going after the bug, but it also sensed the damaged neurons as foreign and attacked them, too, thus sustaining the symptoms.
Last Friday I described this scenario to a neurologist, and he said it was reasonable. He said it's one way that drug-induced autoimmune disorders develop. He ordered some blood tests and an MRI, which I had this past Monday.
I post this as a strong warning. If you are considering taking flecainide and have ever had a spirochetal infection - e.g., Lyme disease or syphilis, among others - get tested for it. If you test positive, you may be running a risk of the same autoimmune response that I'm dealing with. In my view, putting up with a-fib is better than a brain disease that's both difficult to diagnose and virtually impossible to treat.
I am not a medical professional. The above advice is strictly my own.
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Kodaska
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Interesting theory......but I think im gonna take the risk. They once said kids who take lots of calpol was showing to increase the risk of respiratory infections and asthma but is it not the case that kids that are prone to resp infections and asthma need to take more calpol because of their ailment?
Thanks for posting this. So do you think flecenaide poses this risk for everyone, or only for those people who have a history of spirochetal infection? And what dosage were you on, and would that also be an important consideration? When did you start noticing these side effects of flecenaide after taking it?
I think flecainide poses a risk for everyone. I don't have a history of spirochetal infection, but that doesn't mean I don't have Lyme disease or something else that can pass the blood-brain barrier. Lyme tests are notoriously unreliable - lots of false positives and negatives - and the telltale circular rash doesn't always appear. Considering the amount of time I've spent in woods and fields, I could well have the bug.
There's no way to test for bugs in the brain, and it isn't only spirochetes that can pass the blood-brain barrier. My view is that until we know more about testing for central nervous system infections we should be very, very cautious with flecainide. As I said above, I'd rather deal with fibrillation than an autoimmune disorder.
I started flecainide on May 8, 100 mg 2x/day. By May 26 the side effects were bad enough to start keeping a diary. At that point I was experiencing dizziness up to level 6 (on a scale of 1 to 10).
Thanks Kodaska very timely, definitely interested as Lyme Disease is a possibility and am taking Flecainide 200mgs/day. Due to right predominant tinnitus also just had an MRI waiting for the results.
Any extra information that you are able to give would be great.....who is your neurologist.....what are the blood tests for, Lyme (evidently Germany does one)?....what is your MRI looking for...updates on your theory/plans in due course.
I am feeling fine but have taken Flecainide for 18 months in which time I have been bitten by at least one infected tick (a year ago) and treated with the essential antibiotic Doxycycline.
My neurologist is Dr Raday in Madison, Wisconsin. The blood tests are for things that wouldn't be looked at in an annual physical exam. I don't know enough about them yet to say any more than that.
The MRI is looking for anything out of the ordinary. Despite my having symptoms for over 5 months, this is the beginning of the diagnostic process.
If you've taken flecainide for a year and a half and you aren't suffering debilitating symptoms, my guess is you're probably OK. And if you got an antibiotic shortly after the tickbite, you're probably OK that way, too.
Very interesting theory. And thank you for posting. I also have dizziness and fatigue and heavy bleary eyes. I was diagnosed with Fibromyalgia about 8yrs ago before my A Fib ever happened. I'm on Flecanide now for just over 2yrs. As soon as I started taking it I felt the heaviness in my eyes and told my doc but she said there were very few side-effects from Flecanide and it has a very good record so I persisted. I have mentioned the fatigue also but her attitude is there are always a few side-effects from meds and it's better than having constant A Fib or a stroke. At this point I'm also feeling quite depressed from the fatigue and feel like I'm just hanging on by my finger-nails to my life. I feel my personality has changed and I've become quite reclusive except for doing my work. I would LOVE to come off Flecanide but wouldn't look forward to trying something else and starting all over again. I did have a Pneumonia a year before the A Fib started and was very ill and totally fatigued for 6months after having that. Then within another 6 months I got my first belt of A Fib which lasted a few hrs and scared the life out of me. It was only happening about 3 times a year until 2013 when over a 6 month period it was coming more and more often and lasting for 20-30hrs. Once I started on Flecanide 200mgs per day I haven't had much A Fib since except on 2 occasions when I had too much wine!! and chocolate....together!! (that taught me!!)
Can I ask you where you are having the MRI? As in what part of your body?
Thank you so much for sharing. It is helping me to get some clarity on my condition and I'm planning to go back to my E P and be reviewed re meds.
It sounds like your symptoms are similar to mine. Have your eyes gotten so heavy that you couldn't keep them open? I sometimes get so exhausted and bleary that I can't stay awake. Like you, I've also felt depressed, discouraged and reclusive. Mindfulness practice has enabled me to (usually) ride out the symptoms without going into a tailspin.
If flecainide itself has very few side effects, then what you and I are experiencing is being caused by something else. I wonder what your doctor would say if you asked what that might be.
I had an MRI of the brain at the local hospital (Stoughton, Wisconsin, near Madison).
I also wonder what would happen to your symptoms if you stopped flecainide. It has a long half-life, so it doesn't clear the body for at least 5-6 days. If you can put up with arrhythmias for a week, it might give you some good information. If the symptoms subside and don't return, your immune system is probably working normally. If they continue - or get worse, as mine did - then you may have the same condition that I do.
Just to add in case it helps, the symptoms you are both experiencing may be part due to Flecainide.
I have had days when my eyelids were just dropping closed and a midday nap was essential for no predictable reason. Also depressed, anxiety and reclusive in the first few months. Unfortunately, as often with action on AF it is difficult to isolate what is responsible for what. e.g. AF hotspot March 2014, Flecainide April 2014, July 2014 infected bullseye tick bite spotted and treated with anti-biotic, also in that month started to take Magnesium supplement. Started feeling better from July. No dizziness thoughout.
I wondered about fibromyalgia as showing some symptoms too, if I recall correctly these could have indicated Lyme's as well, which is such a devious disease.
I have found changes to diet incl supplements, exercise, lifestyle including Mindfulness and a Qigong breathing exercise all beneficial and consider them an essential part of dealing with AF and restoring Quality of Life. Positive outcomes are available as I am in a much healthier position now.
Hi Orchardworker, Thank you for your input there. Yes indeed what I'm going through may well be partly to do with Fibromyalgia. I tend not to think that much about having Fibromyalgia to be honest. I never even mentioned it to too many people when I was told I had it. I didn't want it so I just though I'll ignore it and it might go away.....mad I know. But as a Yoga teacher I have to admit I just can't take on the partly disabled label. The yoga I teach is quite gentle. There are postures I just can't do so I don't teach them and I emphasize breathing and meditation quite a bit. TG people seem to like it. It's mindful yoga really and it also does me a lot of good!
Not sure re Lymes....just can't go there. Yes I have been bitten by ticks over the years but didn't get a red ring around the bite or infection. You don't hear much here in Ireland about Lymes though you can get it here I'm told. Like I say I can't go there. I have enough on my plate with A Fib meds and my partly disowned Fibro M!! Yes quality of life.... I'm not the person I used to be and that's for sure. far less gregarious....I just don't have the energy to be around people for too long. Also I love to sing and people love to listen to me but I've had to stop as I get too anxious and that sets off palpitations and then A Fib. Yes I have some work to do on getting back some quality of life alright. I live in a beautiful place with good people around me but not enough energy to partake in the way I used to! I miss my old self! sorry for self-pitying rant..... Thank you for your care. XX
We are all entitled to a self-pitying rant. I think it's essential from time to time š I am looking-up the breathing exercise you mentioned and will try it. I do hope your old self comes back to stay and wish you well. Sending Love and Light.
My symptoms may have been due to flecainide at first, but since they continued - actually got worse - after I quit taking it, the drug can no longer be considered the culprit.
I started it May 8 and stopped it (on my own) June 13. June 20 was the worst day ever, and there have been quite a few days worse than that. I'm talking about being debilitated for up to 14 hours, meaning I'm too dizzy and/or exhausted to drive or even take a walk, or do anything but basic self-care.
Symptoms always subside between early afternoon and late evening and start up about an hour after I awaken. So having high symptoms for 14 hours means the entire day. But most days I have high symptoms for up to only 5 or 6 hours. There are even easy days where symptoms don't rise above level 3 or 4.
What's really interesting is that I've had two 10-day periods of low or no symptoms. The last of those ended two days ago. Yesterday I was down for 6 hours. Today, only 2 hours so far (I'm writing this at 3:00 PM), although symptoms can come back at any time.
No, I don't think flecainide has anything to do with it any more.
I imagine you shouldn't just stop Flecanide? Weaning off it would feel better for me. I'm supposed to be on 200mgs a day but decreased it to 100 at night and 50 morning about 4 months after starting to take it. My EP did say that it would be ok to take the dose down if I wanted to try and I did some months ago. Just took 50 at night and 50 in the morn. Within a few days I was very uncomfortable in my chest so I went back on 100 at night and was fine again. I was also on Digoxin 625 x 2 a day and a doctor standing in for my GP this July said he thought the Digoxin would be causing the fatigue as taking it long term causes toxicity in the body! He asked if I'd like to come off it so I said yes so I weaned off it over a period of 3 weeks. But I honestly haven't felt any difference. I'm not kean on living with A Fib for any length of time to be honest as it leaves me exhausted and full of anxiety and I wouldn't be able to work which is very awkward for me as I work for myself teaching Yoga. I might wait til Christmas hols and try coming off it then but will talk to my GP in the meantime. Thank you for all your help.
And yes my eyelids do feel so heavy at times I could just fall asleep anywhere. I often have to have naps during the day now. Also I can't see very clearly. I had an eye test just a few days ago and my eyesight is fine just need 2.5 glasses for reading which is what I've had for years now, otherwise eyes are fine.
The word toxicity does come to mind. I live a fairly pure life practicing Yoga and meditation. Eating healthy fresh food. Plenty of fresh air. I have always had a bad reaction to any kind of chemical in my body. And Flecanide is one bitter pill if you ever noticed the taste. Pure chemical! I just don't trust the pharmaceutical companies, I'm sorry. The side effect thing to do with so many meds really bothers me a lot. As long as we keep needing meds these guys are happy! it's a business through and through!!
Good luck to you Kodaska and thank you so much for your help.
Have you considered ablation? I'm on flecenaide now, and have experienced only relief from my AF. But if I start to feel side effects, or if I discover that it might lead to an auto-immune disorder, then I will stop taking it and get in line for an ablation.
Funny you should ask. I had an ablation to correct flutter in April 2014. Paroxysmal a-fib (many brief arrhythmias daily) developed and I had a second (cryo) ablation this past May. Flecainide was prescribed after the second ablation to prevent breakthrough arrhythmias, despite the low probability because it was done with the cryogenic loop.
What's really ironic is that I objected to the drug because the arrhythmias didn't bother me. I told the doc that I simply noted them without getting emotional. He insisted, despite admitting that they would not affect either the heart muscle or the healing process.
You may want to get a second opinion - did the EP prescribe the flecenaide or a cardiologist? Given you had the second ablation in May ... it sounds like you haven't even tried a period with no rhythm control to see if the ablation works on its own. Anticoagulation is also an issue that needs consideration, depending on your situation. Anyway it all sounds a bit unclear which is why I'd get a second opinion from an EP (either discreetly or politely telling your usual doctor that it's "to give you peace of mind" so as not to offend anyone).
One of the eminent speakers at the UK's Patient Day earlier this month said he encouraged his patients to get a second opinion. He felt it was a good way forward.
Wow! Thank you Kodaska.........."What's really ironic is that I objected to the drug because the arrhythmias didn't bother me. I told the doc that I simply noted them without getting emotional. He insisted, despite admitting that they would not affect either the heart muscle or the healing process"........ That is exactly why my doc was trying to prescribe flecanaide for me, I declined- and am staying on current meds of bisoprolol, ranolazine and warfarin, - for now!
My cardiologist is also an EP who does ablations often. I argued with him about taking flecainide, partly because I wanted to see if there were any breakthrough arrhythmias. He insisted and I deferred to his judgment. It's interesting to note that since the ablation I have had no cardiac irregularities whatsoever, during either the 5 weeks I took flecainide or the 4 months since then.
My current situation is about central nervous system problems, or as my neurologist described it, a drug-induced autoimmune disorder.
As for anticoagulation, I take apixaban (Eliquis), but I probably don't need it. It reduces my stroke risk from just over 2% to just under 2%. It's very expensive ($400 for a month's supply of 60 tablets) and next year my cost is going up from $180/year to $600/year.
When I take flecenaide, even for only a few days, I immediately begin to lose weight, and begin to feel anemic. Lately I have also begun to feel numbness in the hands and feet. I think you are right about the autoimmune response. I also experienced something similar with antidepressants. They messed up my digestive system, and I suddenly became very sensitive to wheat and gluten.
ncernaa, I suggest you look into a differential diagnostic process such as that used by Drs. Richard Horowitz and Joseph Burrascano. They are in the Lyme disease world, but their process is evidence-based - i.e., on clinical symptoms - and can help make sense of whatever is going on. You can find Burrascano's work on the Internet. I'm not sure how much of Horowitz's is easily available, but his book "Why Can't I Get Better" contains a good description of his method.
Lyme disease is essentially a disorder of the central nervous system. It can also affect the gut. You may or may not have it, but you might benefit from learning about it.
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