Hi to all the kind participants here. I have a mystery going here that I hope some Nancy Drew's and Hardy Boys out there can help me with--since the MD's seem to be clueless. I have paroxysmal AF. 3 years ago I started a Pill-in-Pocket dose of 150 mg of flecainide which stops my episodes. Then, 2.5 yrs ago I began to notice a sensation of numbness in my outer toes (which I blamed on tight shoes ) but it slowly began to creep up my legs, thighs, and hips. Just had an EMG (nerve conduction study) which confirmed that I have a small-fiber neuropathy (I still have some sensation, but with an overlay of numbness--weird!), and the neurologist said "It's the flecainide causing the numbness--try to take as little as possible." I was a bit doubtful.
My GP has never heard of this, and it's listed online as "not common" as a flec side effect. These days (since metoprolol 25 mg twice daily) I only take 150 mg flec about once every 4-6 weeks, though it was sometimes more frequent in the past year.
Any sleuths out there have any clues?? Thanks so very much for your help. It's a very uncomfortable feeling and I wonder if there is an antidote of some kind. Diane S.
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Don't think this is much help but I remember years and years ago when I worked in palliative care, we used flecainide for patients with debilitating neurological pain so it would make sense that it does have effects on nerves. I'm not sure how well researched its use in this area was.
Thank you for this info, Bagrat--interesting. I didn't know that flec could be used for neuro pain. It certainly works great as PIP for my AF! Cheers, Diane S.
Hi there - I would be interested in the responses here too.
Mine started in my right toes last June - sharp pins and needles sensation if I walked around the house with no shoes on. During the autumn whole foot would go numb - it got really bad when it was cold with my left foot joining in too. I now have a constant numbness and discomfort that runs down the right side of my right shin and over the top of the foot.
I do have T2 diabetes so had thought it could be that - but I have this well controlled by diet. I have been taking 200mg of Flecainide daily for the past 12 months with Diltiazem to control my AF. Because I wasn’t feeling great on this I was put on Sotalol 3 weeks ago. This has definitely made the numbness worse and it also affected my hands. Now trying Flecainide as a PiP to see I can control my AF that way to try and reduce the medication side effects.
Sorry not really an answer to your question so hoping my observation helps a little.
Thanks so much for responding, Kingfisher44. Your experience w/ it starting in toes etc. sounds almost identical to mine--except that I only take 150 mg of flecainide once every few weeks or month. Alarmed to hear that Sotalol made it worse! Flec works so well for me that I hate to switch meds. Please let me know if you find using it as PIP actually reduces the numbness for you--I would be interested to know. Best wishes, Diane S.
I don’t think I can tolerate beta blockers. I started on Bisoprolol and was exhausted all the time and had really cold hands and feet. On Sotalol my heart rate frequently dropped below 40. Hoping using Flecainide as a PiP will work and will let you know how it goes.
that nerve sensation is either the L4 or L5 nerve coming from your spine. I’ve had sharp stabbing pain over top of my foot and into the right big toe, plus a sort numb pain/ache down the outer side of my calf for some time. A couple of years ago a MRI showed I have spondylolisthesis (forward slippage of one vertebrae over another) at the L4/L5 vertebrae joint, which badly was pinching the nerve. Can’t be more specific about which nerve exactly as I‘ve got a congenital deformity(s) in that area and even the surgeon was a bit vague about it all. I’ve literally just undergone spinal fusion to fix this. Might be worth getting your lumbar spine checked out.
Thank you for your comment. I had been thinking it was all due to the diabetes. I have been a bit confused as I have the diabetes well under control and the discomfort in the lower leg and feet is definitely getting worse. I had begun to conclude it was being caused by medication I hadn’t even considered the back!
It is so difficult to work out what is causing what - may be why the doctors have said I’m complicated!
I appreciate your response, secondtry. I haven't told my cardiologists yet, and I agree, if anyone should know it should be them! You've done well at 200 mg/day, that's amazing... while I only take 150 mg PIP and had a significant reaction, if flec is actually causing this. Just another example of how we are all so unique in our responses. Best wishes, Diane S.
I was told that peripheral neuropathies become more common in people over 60. Mine started in my early sixties and felt more like hot feet, with some occasional numbness in the big toe. When I first went to my doctor it had flared up and I could detect it in far more areas, but that was years ago and has never happened again.
I gather it is more common in those with diabetes, which I don't have. I recall also at the time getting some light brown stains on the skin of my shins, which, again, my doctor said was common in diabetes, so I have always wondered how I can have one without the other, although I'm very grateful that's the case!
My experience with it is that the symptoms subside and become part of the general background of various symptoms age brings in its train (I'm now 69). I hope yours subside soon, too.
HI, Steve--thanks for your response. Yes, they've tested me periodically for diabetes and it's always negative but I don't always trust blood tests and wonder if it's a "hidden" factor. But my sugar has always tested low. I have ulcerative colitis, and peripheral neuropathy can be an uncommon effect, tho my GI drs. have never heard of it! and the neurologist sounded positive on it being flec. I was doubtful and wanted to know how many "real people" on this site had ever heard of it or had it. Seems that some have. Not sure if it's reversible or if I want to trial propafenone... Thanks again, continued good health! Diane S.
Oh, bad luck. My wife's late aunt was a sufferer, and once, in her eighties, after a flare, I recall she reduced her course of prednisolone too quickly and, goodness, we thought the worst; but, she recovered well and reached, I think 96 and was in good general health.
I have had IBS since my mid twenties, but never with any sign of inflammation. I do wonder about inflammatory and autoimmune processes generally, though, since arrhythmias are thought to be linked to those. I gather it's now looking also as if covid might well be an immune system virus in its serious form. There certainly seems a lot still to be discovered in that area of health.
Yes, Steve, and inflammation is now considered the substrate for so many diseases, esp. of the heart. Glad you just had IBS & not IBD--I was in remission for 25 yrs but now it's rearing up again. 2 yrs ago I awoke w/ a severe inflammatory flare in hands, arms, and knees. I work full-time so it was awful for about 8 months, and prednisone got it down. But pred triggers AF! I never took any covid vaccines bec. of my autoimmune status, & had only a brief covid episode last yr. But, like you, I know inflammation is undercover in all of this. If I'd known things would turn out this way, I'd have been an immunologist instead of a therapist and a harpist!
Well, you’ll be busy today then (St Patrick)! But music is so important and being able to play a harp - truly wonderful. I’m just listening to a new recording my son just recommended - Prokofiev’s second piano concerto . Where would we be without music and books to take us into better places?
Thanks, Steve, for that link--it's beautiful! Glad you are a music lover. Got through my EMG the other day by listening to John Rutter. But Prokofiev's Romeo & Juliet is one of my all-time faves (not for harp, ha ha)... sorry you & your fam are not in Kentucky, I'd send you my concert date list! Cheers and begorrah!! Diane (PS I am a specialist in Vibration Medicine, using sequenced harp vibrations for lowering BP, stopping AF episodes, etc. & worked Mayo Clinic for 10 yrs. I used to use my own therapeutic recordings to stop my AF episodes in 20 min. but as the yrs go on, so does our AF & other tx's are needed.)
You sound like you have a very interesting life HH! My wife nearly had to have an EMG for her wrist pain but they just operated and that seems to have done the trick.
I too have numbness in my feet, part of my legs and lower bottom. After tests it was found that I had discs that were compressed causing nerve damage. I am on flecainide and all the usual afib meds and no one has even considered they were to blame
Hope you get sorted out as I definitely understand how you feel
Thank you, that is interesting, Tapanac. I have had an MRI and X-rays of the spine, and nothing showed up. Flecainide does have numbness WAY down the list of possible side effects, so I wasn't sure if it really was something that people got... but we have ruled out everything else! So flec could be contributing to yours, as well, esp. if you are on daily flec. (I only use it PIP occasionally.)
Read the side effects of Flecainide. Neuropathy is in there. I felt like a zombie on flecainide. The literature says some goes away, others not upon stopping Flecainide.
Thank you, Penturner. Could you tell me where you read that? Most of the lists I've read have it in the "rare" category... and they list so many millions of "possible" reactions, none of my drs. had ever heard of it (exc. the neurologist). Since I take flec only occasionally, it's hard to believe it could cause this much paresthesia. Sorry you "felt like a zombie" on flec. Did it also cause you numbness? Diane S.
Agree, the cardiologists don't seem to be concerned about other system side effects of medications.
I am finally off of it after 3 years because the new doctor who replaced my EP who is retiring told me I was in danger of heart block and Flecainide had caused a wide QRS. He was aware of all side effects of Flecainide and I am now glad to be off it. We will see.
Thanks for this. (I used to work for Mayo (Rochester & Jacksonville) but actually didn't look on their site.) I admit I am willing to take flec PIP but I do not want to be on it daily (esp. not now! & I know wide QRS is a risk). Glad, at least, that you did not get the numbness! Hope all goes well for you in future. Diane S.
I was on flecainide at first (dx’ed with afib 7 years ago) and it scared the bejeezus out of me as it caused leg numbness. Stopped taking it and complained to my cardiologist. Am now on Propafenone and it works great. Three years back my cardiologist suggested an ablation. This was a month after my sister in law died on the table having an ablation. Apparently there was a steam pop and it blew a hole in her heart. I will avoid ablation until I cannot.
Thanks so much, Missyanne. Curious, did the numbness start in your feet and work its way up? And may I ask, were/are you on PIP or daily meds? I only take flec PIP and didn't think it could cause this much numbness but I am hearing from some of you that it can. (I'm with you on avoiding ablation; so sorry for your SIL's terrible death.) Diane S.
I took it regularly. It first happened on vacation in Hawaii… then later that summer we had a vacation with granddaughter and I decided to stop taking it as I did not want a leg numbness when hiking in Yellowstone!!
Yes, numbness started in right foot and quickly went up leg. It was scary as I was not aware it was from my med. The Propafenone has been working now for 5 years.
And did the numbness go away after you were on propafenone for some months? Do you have any side effects from propafenone? I might consider trying that--but I don't think you can do propaf as PIP, and flec works so well that way for me. Of well--life = an unrelenting series of decisions. Diane S.
Wow, that's great--well, the neurologist suggested I try to cut down the flec dose. I think I will try. Thanks for sharing your experiences, Missyanne--much appreciated! Cheers, Diane S.
yes I had an echo last year and it was discovered that I had an dilated large left atrium (due it is alleged leaving me many times with very lengthy afib/tachycardia episodes. Pulmonary hypertension, mitral and triscupid leaking valves, diastolic dysfunction and the hole in the heart (think it is called PHO or something like that). The cardiologist snd new EP as I was changed to a nearer hospital because I couldn’t keep travelling to St George’s Tooting, both said the hole was caused through the ablation.
BobD said lots of people have that but this was only discovered after the ablation and had never shown up before
I had a spinal MRI & CT scan earlier because we never thought it could be the flec. Of crs, we know they have to list everything but the kitchen sink, if even one person reported it during the trials. But you wonder how realistic those all are. My mother was on amiodarone for 24 years at low dose and never had a single side effect--yet people are terrified of amio bec. of the long list of potential side effects.
Sorry, I'm not much help with your Flecainide concerns. Even though I have been on that for a few years with intolerable side effects, never experienced anything like you are doing.
However, after no response from my Cardiologist, my GP referred me to an Electrophysiologist who took me off of it immediately. I still suffer side effects from other Beta Blockers, but not as bad. Please, talk to your personal doctor about your concerns and see if they have any suggestions. We are all different, so our reactions to meds are also different. All the best.
Thank you so much, queseyo. My EP knows that I use 150 mg flecainide pill-in-pocket, so I don't take it daily and I really don't have much of it in my bloodstream. This is why I was doubting that it could cause all of this numbness. We've ruled out so many other causes, and I think it is a vitamin deficiency of some sort but it takes awhile to check out all the options. (My GP has no idea what is causing it, but I keep asking him, ha ha.) I'm not giving up the search! Blessings, Diane S.
I’m not on flecainide, but I have had tingling feet from a number of rhythm control meds. First time I noticed it I thought I’d stepped on a buzzing insect, it was startling. Doctors have looked at me like I’m nuts when I mention it, even though it’s a known side effect of meds. Sorry it’s happening to you.
Thank you so much, lovetogarden, for that info. Oddly, I have a numb "overlay" on my toes, feet, up my legs, etc., but have never had pins & needles or any kind of pain. I still have sensation, but w/ this odd sense of numbness on top--hard to explain. Uncomfortable. Maybe all of the rhythm control meds have something in common that way--although not everyone seems to get it. I am not giving up, but will stay on the hunt for what is causing it. Thanks for commiserating! Diane S.
Years before my afib issues and going on to Flecainide (which never caused any issues that I am aware of), I developed concerning pins and needles sensation and numbness in my feet. At first, the doctor thought it might be ciguatera poisoning from eating reef fish (I was living in Hawaii then), but after more testing, it turned out to be a critically low level of Vitamin B12 in my blood system. I had developed pernicious anemia and didn't know it. I went on an immediate regimen of vitamin B injections, first daily, then weekly, and now monthly for the last 15 years to resolve the problem. The tingling and numbness left after about two weeks, my energy felt better, my sleep was sounder, and in so many little ways I realized that my body finally had a very important something that it had been gradually losing. Because it was a slow process, I wasn't even aware of it. It's easy to check with a blood test. Because I have pernicious anemia, the over the counter vitamin B supplements weren't effective, though the injections are. Hope you feel better!
Thank you so much, barbly1. Both of my grandmothers had pernicious anemia, so that is what we first suspected. However--not a single test has come back with low B12, either now or over the years. I so wish they had! I still think this is being caused by a deficiency of some sort, and I am not done exploring that w/ my GP. But I am glad they found it for you, and your symptoms could disappear! Blessings, Diane S.
I have been on Flecainide about three years and for at least two of those and maybe longer I have had numbness in my toes, both feet. Told EP, Cardiologist, and primary doctor, no answer, they don’t seem to care but it really bothers me as it seems to being going further in my feet. I know for sure I didn’t have it before going on Flecainide. I am on the lowest amount, because of my age, but this worries me especially after reading your post. My EP said when I asked him could it be side effect from Flecainide, he said NO! I believe it is but Flecainide is controlling my AFib. As a doctor I once knew told me, medicine is poison, it may help one thing but will harm another. I think this is a true statement but sometime we don’t have a choice.
Hi, Red (BTW, red is my fave colour, too), and thanks so much for your thoughts on this. I still have sensation, but there's an odd "overlay" of numbness that has gotten more uncomfortable as it has crept up my legs and higher. What I don't understand is that I only take 150 mg flec PIP (when I have an AF episode). But I have an autoimmune disorder (ulcerative colitis) so my system may be handling flec differently than others. Like you, flec WORKS! so I don't want to trial other drugs right now. I'm going to ask my EP & my general cardiol., but I'd lay down a bet that neither will have heard of this. The neurologist is the one who said "It's the flec", when my EMG came back normal, & he sounded positive! Please try not to worry... it may not advance at all on you. As you say--we don't have a choice at this minute, anyway. I'll keep digging, and will keep you posted. I just heard that Red Light Therapy has relieved many people's neuropathy--checking that out next. All good wishes! Diane S.
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) but it slowly began to creep up my legs, thighs, and hips. Just had an EMG (nerve conduction study) which confirmed that I have a small-fiber neuropathy (I still have some sensation, but with an overlay of numbness--weird!), and the neurologist said "It's the flecainide causing the numbness--try to take as little as possible." I was a bit doubtful.
Of well--life = an unrelenting series of decisions. Diane S.
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