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I'm a 55 yr old woman that was just told that I have a-fib, I have chest and back pain and I'm so scared.  I'm very scare of going on blood thinners and I hear so many bad things about it, if you get in an accident they can't stop the bleeding.  I was wonder if anyone has any take on this. Can this get better and will is it possible to feel normal again? thank you

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  • Posted

    Hello... I totally understand your fear about being on a blood thinner. I was the exact same way when I was first diagnosed with A-fib 6 months ago. However, I feel better knowing my chances of suffering a stroke is far less than it would be if I were not on a blood thinner.

    I have accidently cut my finger and underwent a surgical procedure while on the blood thinner and did fine. Actually, for the surgery, I just had to stop the morning dose prior to the surgery...that's it.

    It did take a little longer for the bleeding to stop, but was controlled the entire time.

    I wish I didn't have to be on these meds, but I've gotten use to being on them and now I'm not scared like I was in the beginning. Trust me, I was petrified.

    Please try not to worry and focus so much on the "what ifs" .... just focus on the present and that is to focus on feeling better in the present.

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    • Posted

      Thank you judy for your blog it really helps.  I do tend to live with the "what ifs". Your words also help with the anxiety which is not so good for this conditon as I'm sure you know. Again, thank you!!!!  
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  • Posted

    I'm not sure if you what your story is re the a-fib - mine is Paroxsymal and I have been woken up at 4.15 with a flutter and into Afib and therefore just popped a pill  - flecanide which hopefully will settle it.   I had tried earlier in the week to reduce my flecanide because of the side effects to see what happened and now I know!   That in its own way answers your question  - what choice do you have  - well you have the choice it is your decision and I really wish I had an answer for You  and me.   It is scary and disappointing when this happens but hopefully in time you will feel more in control on the meds.   When I had to go back on meds after coming off them and I moaned about how I felt on warfarin I was put on apixaban - for me I think it is better they do warn you in such a way that you fear even a cut on your finger and I am prone to nose bleeds so I myself wondered what might happen  - I have had nose bleeds and had no problem!  Lots of people are ok on the meds so I wish you well  - I hate taking tablets but I have to mentally embrace the fact that the are beneficial otherwise my biology is fighting two wars.  
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    • Posted

      Bad English  where I put -  for me I think it is better they do warn you in such a way that you fear  - there should have been a full stop after better.  'They do warn you' ...      

      I agree they do make it very scary the way they put it over but experience so far has been better.  

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  • Posted

    I was scared too when I was told I had A/F. I had no idea what it was! I had an anxiety feeling and felt my heart beating fast. I was given bisoprolol,rampril and aspirin. That was 5/6 years ago. My AF is now permanent, the side effects have been bad though lots of people tolerate these well. I was then put on atenolol...I've weaned off this one, still rampril and aspirin changed to rivaroxiban. The anti coagulant is stroke preventative and so far no side effects. I've read somewhere that there is an antidote for one of these. I've posted before,just how helpful drjohnm page is on A/F. Please read it. This article has been my prop over the past few weeks. Hope this helps.
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  • Posted

    thank you everyone for your input, it does help me with the facts it is what it is and like everyone else I have to figure out what is best for me.  You all have helped with sharing your stories and it has eased my anxiety. 
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  • Posted

    Hi, I got af last year after 64 years of very good health. Just like you I had a big shock when the role of warfarin was explained to me. I thought like you that if I cut myself I would be pouring with blood my imagination knew no bounds. Relax, it just isn't so. These days anti coagulants are very safe and help you from having a stroke. You are in a much better position than a lot of people out there who just do not look after themselves. My warfarin nurse also told me I would have to eat a wheelbarrow full of dark green cabbage or any other dark leafy beg for it to have any effect. As long as you get your mess sorted you will be fine. There may be a few rocky patches but the previous answers have given you good advice. Stick with it and good luck
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    • Posted

      I meant to write 'as long as you get your meds sorted out' flipping predictive text!!!
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  • Posted

    Hi welcome to the A Fib world! I will share with you my story.  I was diagnosed with A Flutter 4 years ago. I am a 57 year old woman. When I was first diagnosed I was put on a calcium channel blocker called Cardizem.  It didn't really help so I had my first ablation about 2 weeks later.  That didn't work so I had a second ablation a week and a half after the first one. All was good for about 2 years. After that I noticed I was getting stronger palpations again with more frequency. Eventually these palpitation lead to full on A Fib for me.  So for the next couple of years I would have occasional cardioversions about once a year.  I usually go to the hospital right away because I'm very symptomatic. During this time I was not on any medication as my stroke risk is much lower due to the fact I know when I'm in A Fib (some people don't) plus I get cardioverted early into an episode. Within the 24 to 48 hour threshold for stroke risk.  Also I don't have any other risk factors. Fast forward to this past November, up until this point I've been able to control it mostly through removing all food triggers as mine is very stomach and food related. Removing as much stress as possible too as this makes more acid in your stomach. Then in November I was under a lot of stress and not watching my food triggers too closely so I ended up having numerous cardioversions. Since November last year I've had 5 of them! Two in one day sad. I saw my cardiologist and he put me on Flecinaide 50mg 2/day. I really didn't want to take anything as I'm a natural health nut and take no other pills unless it's natural so that was tough for me. But I actually started to feel better taking them. When I went to see him again few weeks later he put my back on Cardizem 120mg /day also.  Well this drug gives me way too many PVC's and PAC's and that makes me feel worse so I called him up and he said stop taking it and just do the Flecinaide. So this is what I did. It's been a month today since my last episode of A Fib and my last cardioversion. I've had no bothersome side effects from this drug. I've learned to suck it up and take it and now I'm thankful I have cause it's made a huge difference to my life. I got it back. I'm not on any blood thinners. I was on Xarelto prior to the ablations and for awhile after with just a little fatigue in the beginning for side effects. Now as far as that is concerned from what I understand the old generation blood thinners like coumadin, warfarin etc, have antidotes to stop the bleeding.  The new generation type blood thinners such as Xarelto or Rivaroxaban do not have antidotes but they are close to bringing one to market soon. Can this condition get better? Well I think that depends on many factors. I found the ablations helped the A Flutter but now that I have full blown A Fib the ablation to correct that is more complicated and success rate is not as high. I have been able to control NOT cure the A fib with being very careful about not consuming food that bothers my stomach in any way or triggers palpatations which seem to eventually turn into full on A Fib. Yes A Fib can be life changing and sometimes tough to deal with. But the best thing you can do for yourself is to educate yourself about this condition. Learn about your options and medications to control it. Stay as active as possible and reach out to people who live with it when you feel you need to. I still have lots to tell so let me know if you would like to share more privately. You will see as you learn about this condition and adjust to having it that even though it can be a pain in the butt and frightening sometimes there are much worse things out there to have.  I was sooo terrified when I first got this condition. I really thought I was gonna die! Cause it really feels like it! Trust me you will be fine. And you will adjust to it. Make sure you have a doctor you like and trust his choices and decisions for you. This is very important. Let me know how you do.  smile  Have a great day! Think positive, stay positive, live positive.
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    • Posted

      Reading your story - nlsupertaxi will have to do as you say suck it as see because my experience is totally different and so may hers -   I have been a lot worse since ablation for flutter - during which I had AF so now I have an AF problem but also I have never been the same person since.   Incredibly weak and lots of pain.     I now manage my AF attacks myself with extra flecanide and that is better than continous visits to A&E because so far they have settled with the extra.    They want to do ablation again but I am very clear that as you say there is a gastro trigger to my AF attacks which can be totally spontaneous out of the blue when resting.   The heart people are not interested in the gastro link although I am pursing that avenue.    In the meantime Flecanide is kill and cure for me.   It has a dramatic effect on my dailylife  - weak - pain - sensitivity for which it is known to create causing me to feel like I have flu all the time and yet if I try and reduce or stop -back to AF attacks.     Everyone keeps telling me they cannot help and because I have side effects then perhaps I am depressed - which surprisingly I am not  but yes struggling with side effects.    All sounds a bit negative but all of that just goes to show  AF is a very individual journey and you may be fine on tablet.   Thank goodness there is somewhere to see if anyone else is experiencing that I/we are. Just about keeps me sane but basically I am fed up that the medical profession won't join up the dots ....ie try and work out the trigger because no amount of ablations will cure AF if the trigger is still present.     And wouldn't it be lovely if consultants of different specialties spoke to each other.    I have a lot of patience but AF must have been sent to be to show how much more is possible.   In the meantime as the advise says stay as positive as possible. 
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    • Posted

      thank you for sharing your story, it is so helpful to know that it's not all in my mind.  it's a horrible feeling that your heart is beating out of your chest.  I too have always taken care of myself and not big into drugs.  I go for my first cardioversion tomorrow and I don't think i should have looked it up on utube.  I think i've had this all my life and didn't know, it would be small bouts and thought it was normal, that it was like a twitch everyone had.  Until the last big one, where I was prepping for my colonoscopy and that's where it feel apart.  I began to have a full blown a-fib that has lasted 4 days.  I've have had palpatations in the past but this was the first time the rate was elevated.  I would like to hear more about your story as I don't know anyone personally with this condition.  I have a great husband that helps me but doesn't understand the anxiety and the fear that you feel like you are going to DIE., and the fear the doctors keep taking about stroke.  Thank you again for your story and motivation. 

       

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    • Posted

      I understand what you are saying about being fed up, i've been dealing with chest and back pain for over 2 years, first they said not my heart and then i've been running to doctor after doctor and they said the problem was gastro.  So gastro was going to do some testing and one was colonoscopy that that's exactly what put me in a full blown a-fib.  Now they said the problem wasn't gastro...i had been trying to tell the that for a year.  Now that i know there are triggers i can watch.  it sounds like acid is one of them. Yes,  we are not alone, i thought i was crazy. 
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    • Posted

      The vagus nerve is a trigger for me. My first AF was after heart valve surgery. After cardioversion I was in sinus rhythm for over a year. I then had a colonoscopy and the probe stimulated my vagus nerve. My BP and heart rate went right down to danger level and I went into AF.

      Another cardioversion and I was allright for for nearly a year until I had a digital rectal examination that stimulated my vagus nerve again.

      I now have a pacemaker and next month will have an AV node ablation.

       

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    • Posted

      I almost pasted out during prep, had to lay on the floor and started vomiting.  They aborted the procedure because I was in A-fib.  Not sure if I want to go back, my bothers had polups so I think I should but I don't want to set it off again once they get it under control.. if they get it under control. ER said this happens, sending people into A-fib that is.  I may also need a valve, hope it's just repair. Good grief this is awful. 
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    • Posted

      That is very interesting about the Vagus Nerve because I have been coming to the conclusion that might be the same for me.   I happend to read a article about Hiatal Hernia Syndrome and Vagus Nerve Imbalance.   I wondered what branch of medicine if at all is interested in Vagus Nerve Imbalance?  Does anyone know.  I first went into AF after 2 years from ablation after having a scan - using a iodine dye which I have never had a problem before with  - I literally felt it go up my arm and stop in my chest rather than whoosh down the body.      What a couple of you have said about the simpliest test triggering the AF makes perfect sense at the moment I sort of what to see a gastro person but know the test may be a trigger too - its tricky isn't it.  Dammed if you do dammed if you don't.   I also wonder if the Vagus Nerve tends to get triggered in a partiuclar area it seems like a silly question but I am curious now its been mentioned but in the meantime off to bed for hopefully sleep but propped up as they seems to help!     Interesting would be interested to hear more about the Vagus Nerve connection. 
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    • Posted

      No problem smile.  The electro cardioversion is a breeze really. They put you under with propofal (the Micheal Jackson drug) then zap, your done. You don't feel a thing and actually you feel much better. Now I've also had the chemical cardioversion and I wouldn't wish that one on my worst enemy. The drug is called adenosine given through the intervenous maybe as a bolus to convert you back to a sinus rhythm. It's also used as a antiarrhythmic. I think they hit you hard with it though when trying to convert you back. Regardless that drug made me feel like I just took my last breath of life. My whole body especially my chest contracted, the air came out of my lungs I wimpered in fear then it stopped and was over. It lasted about 10 seconds and felt like a life time. The doctor said it would make me feel like sh*t (his exact words) for about 5 seconds. He wasn't kidding. Having said that I wil never, ever allow them to do that drug on me again. My husband thought I was dead and he's a retired firefighter who's seen it all.  And to top it off it didn't work.  So electro cardioversion is WAY easier, quick and painless. My father has A fib too and he doesn't feel his usually. So because of this he is on blood thinners - coumadin. Sometimes I wish I didn't feel it. I would gladly take just blood thinners and not have to feel all that. Especially the PVC's. I really dislike those more than the A fib. I can see how the colonscopy would cause you to have issues because some A Fib patients have problems when their electrolytes are out of balance and this can happen when prepping for a colonoscopy. I've never gone for more than a few hours in A Fib but I've been reading on here about lots of patients who go days or weeks before being cardioverted. I live in Canada, Ontario actually and I must say that when I go to the ER I'm given first class priority and have my needs attended to immediately. I'm usually cardioverted and sent home within 4 hours or less. 

      For me very strong palpitations usually come on days or hours before an A Fib episode. So I usually try to prevent the A fib in numerous ways, such as a glass of phyillium fibre or an acid reducer, something to block or reduce the acid. I can't take Proton Pump Inhibitors like Nexeum as they give me side effects so I have to invent natural solutions. I also review my diet and almost always I can trace it back to food and or stress. I have a very supportive husband too but I'm not sure he understands the fear that we have about going into A fib and being out in public or fear of ruining someone's special occasion, or being out alone somewhere when an episode strike's.  When your as symptomatic as I am it scares the poop out of you. Thank god I don't pass out as some people do but regardless I'm always thinking about were the closest hospital is and the what if's all the time. The Flecanide I started a month ago has changed things for the good right now. I hope it lasts. I've finally gotten the nerve to venture out more by myself. I haven't been able to that since November when things really started to go crazy. As far as the stroke thing is concerned how I understand it is, if you are in A Fib or A Flutter for more than 24 hours, 48 at the maximum you start running a much higher risk of stroke as the heart is not pumping normally causing the blood to not flow properly through the heart therefore coagulating over time possibly making blood clots, hence the anticoagulants. When you take the anticoagulants I believe your stroke risk becomes pretty close to that of a person without this condition provided there are no other risk factors. I share with you your fears and anxieties. But I'm NOT going to let this get the better of me. I push myself to not be afraid, go out, exercise, socialize and just get on with my life. It's hard sometimes but I'm determined. Good luck with your cardioversion tomorrow. Let me know how it goes. Take care.  

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    • Posted

      Yes you are right. I live in Ontario, Canada.  I think we get Cardioverted much much faster then in England.  I'm usually home within 4 hours from start to finish. 
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    • Posted

      Yup I have the vagus nerve issue too. Certain foods irritate it and bam off it goes. But when you tell the doctors this they look at you as though you have three eyes. I'm finally going for a consult with a gastroenterologist on the 24th of Feb. I want this doctor to do all the upper stomach/small intestine tests such as an upper GI, Endoscopy, ultrasound and whatever else they can dream up to rule out a slidling hiatal hernia, ulcer, celiac disease etc. I want to make sure that there is no underlying cause once and for all. 
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    • Posted

      I believe the vagus nerve runs through or is very close to the stomach area. So is the cardiac sphincter at the bottom of the esophagus. I truly believe there is a connection between them and stomach acid or gluten/celiac issues, food sensitivities. I've tried the low histamine diet with fairly good results but I have to stick to it religously though.
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    • Posted

      Interesting, that's exactly the procedure I was having when I went into a-fib.  Having chest pains and they were looking to see if it was a Hiatial hernia or ulcer.  Never made it that far so I still have the chest pain also.  
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    • Posted

      Yes there is definately a allergy/intolerance link with me.   I had the AF event Wednesday am and realised last night I had an allergic re-action - red raw rash which comes out on an old operation scar on addomen fortunately once it comes out I know the trick to heal it up within 24 hours.  There is some toxicity of some sort going on.    My tests results last year showed some raised levels of inflamation but the speicialist said I was nowhere near the levels found in coleac disease people.  Hmm just symptomatic of it though.  Symptomatic of thyroid but I don't fit that box eithier!       My episodes of waking up with AF also co-incide with a need to go to loo so there is definatley a digestive element with some toxicity.  I was referred to gastro person but because my GP didn't put the right info its been treating as routine and I still don't have an appoitnment so I now have to see GP again to push it along. In the meantime having quite a difficult time but .... as AF is a journey (!) I keep going  - chin up!    I am slightly worried about having any upper GI tests but I know they need doing yeek. 
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    • Posted

      Hi Derek, Just noticed you were answering this post. Hope you are well, I know I have asked you this before but any news on Popeye? He seems to have fallen off the face of this group? Hope he is ok. Keep well. Cheers.
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    • Posted

      Anything but well:-)

      As I said AV Node ablation coming up next month and waiting on an MRI of my back for a numb leg and back pain. I hope that you are doing better.

      No sightings of Popeye recently, rather worryingscan . You could send him a private message to see if he repies.

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    • Posted

      Oh dear, I hope that things go ok for you, wonder what your back pain is caused by, could be a trapped nerve? I had a friend who had an MRI on his back last year, he is on some different tablets and feels a lot better now. I think that Jess sent him a private message last year, not sure if she got an answer from him, he always used to make us laugh with his take on his problems. Hope he is ok. Good luck on your ablation, is AV node ablation, just known as 'ablation'?
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    • Posted

      Hummm have you gone to see a Naturopath? I'm wondering if it could be gluten intorerance? Or wheat intolerance. They are more open to A Fib patient's ideas connecting the stomach issues to the heart issues. For me I believe it's not the actual gluten but the fact that these bread products etc are now using GMO (Genetically Modified Organisms) grains, to which I think many people have become sensitive to. Our bodies do not recognize it as food it can digest properly. Do you think the rash is related to gluten or wheat maybe? As far as the thyroid goes you can be symptomatic before the parameters of the standard medical testing will show you have a thyroid problem. A qualified naturopath can test for this using different methods and determine if you have a thyroid problem far sooner than a standard medical thyroid test. 

      Ya I get the need to poop too sometimes with an A Fib episode especially if it's a bad one. It seems to me the that sensation is coming from the A Fib/vagus nerve going nuts and speeding everything up. I'm not too thrilled about getting gastro tests done either but I've found a great female gastro doctor who is interested in what my theory is for A Fib and related stomach issues. Are your tests being done in a hospital setting? Mine will be done just across from a major hospital and my cardiologist is just a couple doors down. But still not close enough for me haha. Well I hope you feel better soon. Stay in touch

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    • Posted

      When I was getting my pacemaker fitted the ward sister said that many patients go into AF when they pass a hard stool and it sets off their vagus nerve.
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    • Posted

      Interesting my seems to be the other way around.  The A Fib creates the need to poop. haha but sometimes its just a sensation.  By the way how does someone send a private message? I can't figure it out. I'm sure it's simple but my brain is not finding it cry
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    • Posted

      At the moment it is a mystery and I have given up on the NHS for private after having been referred by them to a podiatrist, orthopedic consultant and a neurologist. I then had a private lumbar spine CT scan and the report noted some disk problems but said that the nerve openings were OK. The neurosurgeon I took it to noted my inability to walk unaided and my lower back pain but found no reason for it and wanted a whole spine MRI scan.

      He referred me to my local hospital where InHealth run the scanner that the NHS cannot afford for Private and NHS patients as my cardiologist there could reset my pacemaker to MRI mode BUT they will not scan my makers type of pacemaker as they have not yet agreed a procedure for doing it. My pacemaker is even more compatible that the ones they do scan. As they say, you couldn’t make it upJ 

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    • Posted

      You just clck on the envelope below the persons name. Is my one showing as it does not show at this end... perhaps to stop me from talking to myself:-)

       

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      I'm with you sandishealthy  - a AF in middle of night seems to be followed by a 'poop' but not hard  - Enough said. 
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      Which area of country is the fab gastro person?       I will have to consider Naturopath.    I have been wheat free for years - cannot touch it but its an intolerance not an allergy so not recognised by NHS but major to me.   I've since gone Gluten free to see if it helps and although I think it does I am still symptomatic.     Yes understand all about thryoid.  I was originally treated for thyroid by the NHS GP although wasn't within the bands but then I moved and the next doctor was horrified.  I tried being treated privately but am not currently.    That's a story best forgotten but the main point is the doctors want us to fit in 'bands' and if we don't we havn't got it!!  Ho ho.          Re the gastro have been to see GP today and asked them to speed up referrel.     Strangely tonight my AF hasn't blown but is pushing pushing pushing very strongly so tonight might be fun!  I had to laugh because for a year I have been saying to my heart consultant why don't you talk to the gastro people and sort me out together.   He just stared at me and then sent a letter to my GP asking me to be referred to gastro again.    I saw my old GP who just sent a generic referral and when I chased that up this week they said not sure when it will be likely May!     In view of how I described my symptoms to GP that is a disgrace.      Anyway now moved GP's to try and get some consistency and my new GP doesn't undertstand why the heart man isn't talking to the Gastro person himself  and that when I see him next week to ask him too.   That is what I have said for a year!     You have to laugh it all seems so simple but its just like being on a conveyor belt of inefficiency.   Anyway fingers crossed for tonight.  
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    • Posted

      Have you ever taken a fluoroquinolone antibiotic such as Cipro or Levaquin? These can cause a toxicity that results in many different health problems. Both times I was given Cipro recently I had heart reactions - the second time after only one pill I ended up one week later with afib in the hospital. They said it was a result of my thyroid meds being too high but the first time I had Cipro IV in hospital I had not had my usual meds for several days as the hospital pharmacy did not stock them. The ECG they did on that occasion did not show afib but some tachy and an abnormality in the electrical conduction. This had never shown up on previous ECGs. If you have taken these antibiotics in the past look up fluoroquinolone toxicity but be warned there are some real horror stories from those affected by this.
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      No not taken any of those antibiotics.      I have been treated with antibiotics many years ago to do with ME without success.    If I have a feeling my problems might have a genetic root  - and then simply over the years the body has become hypersensitive.      After a two year break from AF it was triggered 2 hours after a CT scan with a dye injection  - never had a problem before with those scans however the problem has been building up and the dye was clearly the 'hair that broke the camels back' so to speak.     
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    • Posted

      I have that too-at the moment both Achilles, elbows and forearms. Its not that severe but it is now nearly 6 months since my last exposure to Cipro. My worst problem though is costochonditis which I have had on and off for more than15 years. I think the Cipro messes with the formation of new chondrocytes and thats why the tendon and other cartilage problems recur. The cardiac problems are less well known apart from the QT prolongation.
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      In Newmarket, Ontario, Canada. I've only met her once but I really seemed to connect with her.  She didn't dismiss any of my idea's regarding the A fib and stomach issues. Which is great because most of them look at you like your nuts or they actually know about the connection but refuse to acknowledge it because it takes fees away from them if they refer you to another specialist.
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      Some researchers think fluoroquinolones actually cause ME and fibromyalgia as the symptoms of FQ toxicity overlap so much with the symptoms of these "new" diseases that have evolved and multplied along with the increasing prescriptions of these antibiotics (whose mode of operation is actually that of chemo drugs) for reletively trivial infections that could be treated with something far less risky. FQs were developed as big guns for the treatment of serious stuff like Anthrax - but not much money in that. Anthrax is far less common than UTIs or sinusitis.
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    • Posted

      The last time I had  fluoroquinolone  was after my pacemaker was fitted in July so cardiologists cannot be aware. I'll keep it it mind for when I have an AV node ablation next month.
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    • Posted

      If it is just as a preventative I would definitely ask for another family of antibiotics. The fact that you have had tendonitis before means that it is contraindicated and if you are over 60 at increased risk for a rupture of the Achilles tendon. You must tell the cardiologist about the tendonitis. Cardiologiste jolly well ought to know that this class of antibiotics can cause long QT and it seems to me that if you have already one heart rhythm problem you don't want another one. But every time you take a FQ antibiotic you risk reaching your individual body's tolerance for these drugs and suffering some very nasty and sometimes permanent side effects long after you have finished the course.

      Cipro actually brought on tachy and afib for me. Luckily all has gone back to normal and my cardiologist let me come off the Préviscan ( what they use here in France instead of Warfarin) and after another couple of months I was allowed to come off the Bisoprolol.

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    • Posted

      I am way over 60. Actually my first tendonitis started when I was 65 but was caused by too much walking on holiday in Devon

      The first time I had cipro I did not have a problem but did the next time and then with fluoroquinolone. The brand I was given last year did not ring a bell for being of that family so I took it for a few days before feeling a familiar twinge.

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