Hi everyone! I have a couple questions and praying someone will have a clue to what's going on with me. I went to the hospital a month ago I couldn't breath and was in a complete panic, I had a major headache and my face was beet red I also had crushing pain in the middle of my chest, they determined after 2 days in the hospital I had crazy high a-fib, they started treatment with flenicain, cartizem, eliquis, and busbar (for nerves) anyway, I was sent to a pulmonologist because the cardiologist says the problem with my breathing isnt the heart, the pulmonary dr. says my lung functions are fantastic, nobody seems to know why a month later I still am short of breath with a very heavy feeling in my chest and pain straight through to my back, I cant do anything, just getting out of bed to go to the bathroom is such an effort, I cant go to a store or even leave the house.. Does this sound familiar to anyone?? I'm so disgusted i feel like I'm going to just die 😥 thank you in advance
1 month since being diagnosed with RV... - Atrial Fibrillati...
1 month since being diagnosed with RVR Afib
Can you tell us about your daily life? Retired or working? What kind of job? How many kids??
I just turned 50 last month, I'm married and very active, I live on a farm, I stopped working a few months ago ( hairdresser) because I was so exhausted and rundown I was constantly getting sick with bronchitis, my kids are in their 20's grown and have their own lives.
How were you treated for the bronchitis?
I've been treated with albuterol and antibiotics, occasionally with prednisone
Which antibiotics? Have you ever been treated with Cipro or Levaquin particularly in combination with prednisone?
Cipro many times
Then it is very likely that you have been "floxed"-that is you are suffering from Fluoroquinolone Toxicity Syndrome. The symptoms you describe certainly point to that. I would urge you to look this up online . There are several Facebook groups for victims in most countries. There is also an excellent US website called Floxiehope run by a great lady called Lisa who was floxed herself. There are lots of stories of recovery from this. I have to warn you - recovery is not quick. I have been floxed myself - my first attack of afib was after taking Cipro- and four years later I am still struggling with various related health issues the worst of which is widespread tendonitis which makes exercising difficult. One of the major problems for floxies is that nothing shows up on tests - hence the pulmonary tests coming out fine even though you can't breathe. This "air hunger" is a symptom that is reported often. I have had it myself along with the heavy chest and pain going through to the back but not badly enough to send me to the hospital. Sharp pains in various parts of the body are also a common symptom. Fluoroquinolones attack cartilage and can cause cartilage degeneration in the ribcage.
Omg!! I looked it up. I never heard of anything like that. I had to have a scope done when I was in afib because of the chest pain, the GI Dr. Said I had alot if inflammation of my chest and that possibly that was why I cant breath, I've felt on and off feelings of be breathless but when I went into afib last month it was so extreme I truly thought I was going to die.. Does this ever heal or go away? I cant imagine living long with it this way, I dont understand why this all happened at once.. thank you for telling me abt this, I'm going to bring it up to my dr. and see what his thoughts are.. Is there any treatment for it?
Fluoroquinolone Toxicity is weird as it affects people differently. Some people have immediate reactions to one or two pills. They are the lucky ones usually because they stop taking them . Others have delayed reactions where the symptoms don't kick in till after the whole course has been taken- sometimes weeks or months later. It is rare for them or their doctors to make the connection between the antibiotic and their health problems. So they get given them again and again .Some people react the first time they are given a fluoroquinolone. Others can take several courses with no or little reaction then one more course and wham ! the reaction kicks in. Do not expect any recognition from your doctor. Most doctors don't know about floxing or vehemently deny it. Understandable as no doctor wants to admit to having poisoned his patients. But these drugs are incredibly powerful. They were developed for serious diseases like anthrax and plague but due to Pharma promotion they have been dished out like sweeties for all sorts of minor complaints for 3 decades. It is only recently that both the FDA and the EMA have recommended that they should not be prescribed for bronchitis ( often caused by a virus anyway) , sinusitus or uncomplicated UTIs as the risk outweighs the benefit. But many doctors still have not got the message. When did you take your last course? It is essential that you never take Cipro or another fluoroquinolone again. Most people heal from this. One of the posters on Floxiehope- L - lived with this air hunger for months. She did recover but only after some treatments. It is essential to start taking a good magnesium supplement as FQs strip magnesium from the body. Are you suffering from tendonitis and insomnia? Most floxies have severe fatigue and muscle and tendon problems. Arrythmias are also common with QT prolongation the most dangerous. Don't panic - if you have been floxed it is essential to learn about it and see if some of the supplements recommended help you. Most people recover but there are horror stories out there from those who don't. When I first found out about what had happened to me I was horrified by some of the stories. That is why Floxiehope is a good site as there are recovery stories and those who recover help others. Feel free to ask me any questions . Sadly there is as now no recognised allopathic treatment for floxing. Not likely to be either as it would mean the manufacturers having to admit to the toxic nature of their product.
Wow.. I will let you know what my cardiologist says tomorrow when I talk to him about this, I'm sure you are right about not getting anywhere with the Dr.s about it. Even if he doesnt agree with the possibility that I have been floxed I'm going to ask him what kind of potassium & magnesium I should be taking. I cant thank you enough for telling me abt this, I called my sister and discussed it with her and she is a nurse, she said that for sure it could be that.. I just started to follow you on here so I will tell you how it goes tomorrow.. thank you again 😊
Knowledge is power. I have been floxed 4 times since the late 80s but only found out about it after the latest one in 2015. I spent the whole of the 90s wondering what was the matter with me as I had constant mysterious health problems. Many times I worried I had cancer. Now I worry less though the cyclical nature of the recovery from floxing can be very frustrating. But I am slowly getting better. Another thing that is crucial is to only eat organic meat and dairy and no farmed fish or shrimp as these antibiotics are sometimes used in raising animals and there are residues in their flesh. This can set back recovery. Can you remember how long after your last course of Cipro your attack of afib was?
Honestly I have had this tightness in my chest for a couple years and shortness of breath, but I have been treated with cipro atleast 3 to 4 x this last year, I had cipro probably 2 months ago was the last time and I went into afib a month ago.. I also have this bright red flushed face every couple days that gets hot, very odd. I thought the not being able to breath was caused by afib but the cardiologist says that's not true. Is there anything that you can take to bring down the inflammation in the chest? I woke up last night at 2am struggling to breath for atleast 2 hours with such a horrible feeling of fullness, I wanted to panic but I know if I do it will be worse 😢
The breathing problem might be related to inflammation in the chest but it is also possibly a mitichondrial issue. You should sue your doctor. The new FDA guidelines on fluoroquinolone prescribing were issued in 2016 so he has no cause to be giving you so much Cipro. He is ignoring the guidelines. You have had a lot and in a short time. You could try N acetyl cysteine for the breathing. This loosens mucous in the lungs . It also suppoerts the immune system and helps you not get respiratory infections . Since I have been taking it every day I have not had a cold in 3 years. I would register at Floxiehope and ask about your flushed face there . The people who post are very sympathetic and are mainly Americans so they understand the system of healthcare there. I post there but under my real name. In reading the recovery stories you can see what problems other people have had with FQs. For example a lot of people get central nervous system problems like seizures, severe anxiety and insomnia and others peripheral neuropathy. It can affect every system in your body and some poor sods get the lot but others only some. I have had very few CNS problems. Some people get little tendonitis but severe muscle wasting. Others terrible digestion problems. If you look at Bronwen's recovery story you will see she had a lot of heart related problems.
Well I just got back from the cardiologist, he says I'm fine and he doesnt need to see me again for 6 months, he said he thinks I need a rhumatoid doctor or an allergist because he has no clue why I cant breath, I brought up the cipro and told him I'm thinking perhaps I've been floxed, he actually said that I could be but he doesn't know anything about that and I need to talk to my primary dr.. so more and more I'm believing I'm floxed 😓 I have an appt tomorrow with my GP and we will see what he has to say.. The cardiologist says he thinks I need to go to a university hospital but none of them except my insurance so I dont know what I'm going to do. It's so scary to think these meds can actually kill you, we put all our faith in our dr's believing they know what's best for us with medication, honestly I'm now afraid to take any of it.
Did your primary give you the Cipro? If so I'd be surprised if he concurs with the cardiologist. Anyway it doesn't really matter as there is no cure apart from time, being very careful with your lifestyle and trying what supplements might make a difference to you. Like the symptoms and how it hits people the recovery is very individual too. Some people take months to recover others years. Some people are helped by various supplements ,others get no relief from them. Athletic people seem often to get hard hit. Age makes a difference. The recovery goes in cycles. You improve gradually then get a relapse. Gradually the relapses become more spaced out and less severe. With relapses the original symptoms return but often new ones pop up. Like peripheral neuropathy. I did not have this at first . I would not worry too much about going to different specialists. Lots of the Americans on Floxiehope have gone this route ,spent a fortune, had loads of tests to be told their tests are all fine and it's in their heads. This is infuriating and the stress and rage hinders recovery. It's good that the cardiologist has heard of floxing and thinks it is possible. Obviously the message about these poisonous drugs is finally getting through. I am very reluctant to take meds myself. I'm on Nebivolol and Apixaban for the afib. Oh and another thing - you need to get your levels of vit D and B12 tested. It is important for the recovery to have a good level of vit D.
You were right! I seen my dr. yesterday and he said being floxed was ridiculous because he has taken cipro his whole life and has prescribed it and never had anyone that's had an issue, then he said I sound like one of those ppl thats against vaccinations and that it's just plain crazy.. He said I have arthritis in my rib cage and gave me 2 shots of cortisone in my chest but I don't believe that since I dont feel any different.. I did come back with allergies to dust mites and a couple other things and I asked if that could be causing the breathlessness and he said no alot of ppl jave allergies. I really feel like I dont know what to do at this point, I'm wondering if the flecainide, elequis and diltiazem could be aggregating it. Anyway, I've seen my GP, pulmonologist, GI dr. and cardiologist and nobody knows what's wrong, I'm really afraid I will die before they find what's going on. Anyhow, thank you for your thoughts and insight on this situation, I greatly appreciate it 🙂
Please don't panic Lily. I would ditch this doc pronto. Unfortunately a cortisone jab might make you worse as many floxies react badly to cortisone. The "arthritis" in your rib cage is probably costochondritis . This is an inflammation of the cartilage between the ribs and where they join on to the sternum. If it is at the sternum this can give you very bad chest pain that mimics heart pain. This condition can be caused by Cipro as all fluoroquinolones attack cartilage and collagen. I have had this for years and it is one of my worse floxing symptoms but I am very much alive! Press on your breastbone hard with your fingers. Does it hurt? If so it is costo and this can also result from low vit d. You need to take charge of your own health. Your doctor's denial that Cipro can cause a serious reaction is toxic and will hinder your recovery. You need to evaluate what other floxing symptoms you might have like tendon problems and peripheral neuropathy. Unless you can find a doctor who accepts the reality of floxing and will work with you your only recourse is the support of other floxies. Not all doctors are in denial . My own GP accepts that I have FQ toxicity . But as there is no cure he feels helpless. Register at Floxiehope. Join a Facebook group . You might be able to get in touch with other floxies in your area who know of more sympathetic doctors. Also do not take any NSAIDs . They can aggravate symptoms. You are not going to die but you might feel bad for some time. It will get better. Have you started the magnesium ?
No I haven't started magnesium because both the cardiologist and GP said I should just eat more foods with magnesium, is it safe to take it when on these AF meds? I know that I have a low vitamin D level. This is truly the worse feeling I've ever felt. The GI dr. said I did have alot of inflammation in the cartilage in my sternum and chest, I really believe this is what caused me to go into a-fib. Do you know of anything to take to cut down the inflammation? I'm actually afraid to eat because I'm worried it will cause more inflammation. What is NSAIDS?
Useless prats. The problem with trying to just get your magnesium from food is that intensive agriculture has depleted soil magnesium levels so veg have far less than they did 50 years ago. Dr Gupta a cardiologist from York who posts videos on this site recommends magnesium taurate for afibbers. You can find his vids by putting in a search here. They are excellent - very informative. The magnesium often helps keep the afib at bay. You will come to no harm if you do not exceed the daily recommended dose which is about 350 mg for women. I take a supplement with a combo of magnesium malate and biglycinate with added taurine. Malate and biglycinate are supposed to be better for pain. Since taking this -100 mg three times a day- -my afib has stayed away for 8 months. Spread out the dose over the day rather than take it all at once. That helps avoid loose bowels . If you take too much magnesium that can affect the bowels . It is unlikely that the inflammation in your rib cartilage caused the afib. It is far more likely that they are separate symptoms of the Cipro toxicity. Eating will not increase this. You need to eat and eat clean- organic meat and dairy . No farmed fish or shrimp, organic fruit and veg if you can afford it. No processed food or sugary stuff. Your gut bacteria will have taken a hammering from all that Cipro so try to eat some fermented foods and yoghurt ( unsweetened). Probiotic capsules can help some people but cause problems in others. They gave me acid reflux at first.
I am not surprised by your GP's reaction though it is disgraceful. Many floxies have had the same treatment. BUT since the FDA issued new guidelines for fluoroquinolone prescription in 2016 he is in breach of those if he has given you so much Cipro over the last year and I would seriously consider suing him. Maybe he is afraid of this and that is why he was so dismissive. NSAIDs are painkillers like Ibuprofen. I'm not sure what the brand names are in America. You must get your vit D level up as soon as possibe . This is another reason to take the magnesium -the two work together. The people at Floxiehope are more knowledgeable than me and will be very glad to welcome you and help you. Do not despair - there are hundreds of thousands of us and most of us get better.
I cannot thank you enough, you have helped me more then anyone with this and from all you have said it makes perfect sense, I feel like I've been poisoned and not able to prove it.. I'm not sure how many prescriptions uve had the last couple years but this last year I was treated every couple months for bronchitis and uti's, my immune system is awful! I gave up working last year because I'm sick constantly and missing 2 weeks of work every other month. I bought a bunch of anti inflammatory herbs and I'm trying get rid of the inflammation by putting them on our food. I never heard of being "floxed" before but it sure does explain alot, I'm wondering if all these ppl they diagnose with fibromyalgia have actually been floxed, I've had 2 dr.s ask me if I have fibromyalgia, I've never been truly diagnosed with it. I made an appointment with a dr. out of town that is supposed to be very good for a second opinion I will most likely be changing dr.s if I like him.. again thank you so much, you gave me hope! ❤
How common is breathlessness associated with fluoroquinolones? How is the diagnosis made?
I do not know. I know that I have had this myself and that other floxies have reported it. The diagnosis for the symptoms associated with Fluoroquinolone Toxicity is usually not made. It is only quite recently that official bodies such as the FDA and the EMA have even recognised this as a problem. There have been revised prescription guidelines but this is mainly with the purpose of trying to limit the numbers of new victims. There have been no concrete proposals for diagnosing and looking after existing victims or for medical education about the problem. Those of us who testified at the EMA enquiry held in London on 13 th June last year either in person or by email were bitterly disappointed at the lack of proposals for this when the EMA final report came out. If you are unfortunate enough to have been floxed you get next to no help from the medical profession. Your only help comes from fellow floxies. It's partly because there is no cure other than time and for some people not even that. Many of us are very angry for some time but this is counterproductive as stress makes the physical symptoms worse. Because of the delayed reaction time there are many people who have been floxed who never know it. After all who associates a ruptured tendon with an antibiotic taken months previously for a UTI or bout of sinusitis?
Thank you for your detailed description of this syndrome. It must be deeply frustrating that medics don’t recognise it’s existence, probably because there is no diagnostic test or associated biological marker. Hopefully that will come with time. Are inflammatory markers not elevated at some point?
Sometimes but often not. There is more scientific research going on as to how the fluoroquinolones do the damage they do but nobody has yet figured out why some people are so much worse affected than others and why people who can barely function present with a perfect set of blood tests. This was what alerted me to Lily Mae. Her cardiologist telling her that her heart was not responsible for her breathlessness and the pulmonologist saying her lung function was fine. Yet she can hardly get out of bed. Mitochondrial damage is suspected and this makes sense because of the mode of action of the drugs. They are inhibitors of topoisomerases and DNA gyrase . These are enzymes that are essential for the unwinding and reconstitution of DNA in replication . Inhibit these and the bacteria cannot replicate. Unfortunately when the drugs were developed little was known about mDNA. Scientists now believe that mitochondria are descended from bacteria and it looks as if the FQs attack mammalian mDNA. The only other topoisomerase inhibitors in the drug world are chemo drugs. So basically people have been given courses of chemo for sinusitis or to prevent traveller's diarrhoea. Now no doctor would deny that chemo can have delayed side effects sometimes appearing years after treatment and indeed sometimes provoking other cancers. And some chemo drugs are toxic for the heart. I only found out about floxing after the second time I was exposed to Cipro here in France. I had taken one capsule and within an hour had the same visual disturbances I had had when given it by iv a year previously for diverticulitis. Then I had also had tachycardia and after an ECG it was stopped but sneakily. Nobody said I had had a reaction to the drug and that I should never take it again and worse the gastroenterologist did not write to tell my GP this. The evening of my discharge I had another attack of tachy that was worse but by the time I saw my GP the next day all was normal so I don't know if I was in afib. So he gave me Cipro a year later for a suspected UTI (which I never had!). After the immediate reaction I looked it up and was horrified by the stories of what it could do. I stopped it immediately and apart from some minor pain in my right Achilles tendon ( which I'd had in the hospital too) thought I had had a lucky escape. A few days later I was blue lighted to hospital with a hr of 160 and told I was in afib. The afib connection is often reported by floxies but on the whole is not recognised by doctors. Why not? Because they stick to what is on the patient leaflet put out by the manufacturers where only prolongation of QT is mentioned. Same with the tendonitis . Any and all tendons in the body can be affected but the docs hone in on Achilles tendon because that is emphasised in the leaflet. Grrr! Sorry for the rant!
Thanks again.
3 1/2 yr ago I was diagnosed with same RVR A Fib, they put me on a rhythm drug, it really made me feel awful. I complained for 4 months, the cardiologist kept telling me to hang in there. Finally I got a second opinion and saw an EP and before I even opened my mouth, he said “ you are clearly not tolerating this drug”. He switched me to a different drug and I got my life back.
I'm do praying that this is just the meds making me this way, I'm a little worried though because I keep getting sharp pains on my left side, i feel really awful. Do you mind me asking what kind of medication your on for the a-fib? I have an appointment Tuesday with the cardiologist and I'm going to ask him to change it, i have a feeling he is going to tell me the same thing your cardiologist said abt staying on it and giving it a chance but honestly I'm not functional, i go from the couch to the bed and that's it.. 😔
You shouldnt be having pain in your side from a fib, Im thinking you need to be seen as there may be something else going on and a fib isnt painful. Do you have an urgent care you can get to?
Well I've had the pain on and off for months and it feels like pinching, i had all the tests on my heart a month ago and they said everything looked good.. I've had a fullness feeling in my chest since I went to the hospital last month, it's never gone away, is that normal after having an afib attack?
I didnt have any of that. When Im getting ready to go in to a fib I feel weird in my chest and neck. Glad they ruled out cardiac issues with your pain.
What did the Pulmonary doctor say about the drugs that you are taking? You should ask him.
He didnt say anything just that I need to stay on the medications, he seems to think I got afib from sleep apnea but I dont know that for sure, I really dont know how I got afib
Take a Sleep Apnea study. Rule it out.
Hopefully, your body has panicked and this is the source of the shortness of breath... When they managed to flat line my EKG 5 times for 5 seconds each time, I had the bejayzus scared out of me for 2 weeks... and this is me who was an inner city copy at age 19 and who thinks he is the most mentally resilient guy on the planet... I hope that simply being frighted so much you can't breath is the answer, because that will pass eventually..
i suffer from afib have problems with my breathing i take elquis to thin the blood some people have a problem with this blood thinner ask doctor if he can change it for you there are three in this family of blood thinners,all the medication makes you tired and the afib wears you out totaly.i also i have started taking a magnesium supplement by floradix, this is aliquid and helps wit the afib. the heart is the biggest user of magnesium in the body, i am on bisopralol to slow heart down, hope this info helps take care.
Thank you for the advise, I'm going on Tues and definitely going to ask him if he can change it, I am going to ask about the magnesium too since mine is low and so is my potassium,, so far being 50 has left a bad taste in my mouth I sure hope it gets better 😔
Cipro depletes magnesium bigtime and magnesium siupplements are essential. N acetyl cysteine might help the breathing.
Tell me about it love 69 and life is getting more difficult by the day. low potassium and magnesium both look after the muscles in the heart and the electrical system as well.yo take care love.
I’m post three ablations and only on Eliquis now. I was getting faint and breathless every time I bent over or rose from sitting. I started supplementing with magnesium and potassium and I gradually got better. It took two to three weeks. It comes back occasionally if I get super stressed.
I'm terrified to even go to the grocery store, I cant function like this 😭.. when I walk I feel like my entire diaphragm is caving in with pressure and I cant hardly breath, I have stabbing pain in my heart and the cardiologist says there isnt any pain with a-fib.. I'm totally disgusted! Do the ablations work for long?
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