How many of us have read about Roemheld Syndrome? Does it exist? What do cardiologists in the UK think of it?
Most of us suffer with AF now or in the past. We take medication for it whether it is controlled or not. But need we? Have we been barking up the wrong tree?
I had PAF that built up over a few years until I had 12 hour episodes every 9 days. I had an ECG record to show it was AF. After several attempts with different medications it was completely controlled with Flecainide and bisoprolol for the past 8 years.
However during this past year I have had intermittent high blood pressure and high or low bpm.
Strange thing is that most of my symptoms align with Roemheld Syndrome (RS). Pain in left shoulder, discomfort in chest, light headed, spikes in blood pressure, hiatus hernia.
My wife has always suspected that my problem (AF) is associated with the vagus nerve. Trouble is when we have mentioned RS to cardiologists who dismiss it (almost as if it doesn't exist).
I'm reluctant to stop my AF medication as I don't want it to return, but I'm definitely going to pursue RS treatment (magnesium etc). I'll then decide if I can withdraw AF treatment. Bill.
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There are arrhythmias caused by autonomic dysfunction but incredibly hard to get diagnosed.
There is just one hospital in Uk, a few more around the world with doctors who specialize in this area - list on the STARS site.
There is also a FB page on Autoimmune + Autonomic Dysfunction as there is an autoimmune disease which causes these symptoms, very little known otherwise, sorry, couldn't paste the link. There are some interesting posts there.
Type GERD into google and you will find loads.
I take Pyridostigamine for an autoimmune disease, which I recently found out from the STARS site also is used for autonomic dysfunction - stabilized my BP and I rarely get extreme swings, which I used to do.
I developed Ulcerative Colitis before arrhythmias and yes have always believed the 2 were connected. Recent research is now proving the connection - through mapping of autonomic nerve network which wasn't known to even exist until latest form of scanning revealed a network of very fine fires around the brain. Still very early days and most doctors will dismiss it, unless they have a specific interest,
May I ask - have you had a trauma to the spine before suffering these symptoms? Traffic accident, a fall for example?
There has also been research into history of people with these diseases and found that many suffered childhood emotional trauma.
"There is also a FB page on Autoimmune + Autonomic Dysfunction as there is an autoimmune disease which causes these symptoms, very little known otherwise, sorry, couldn't paste the link. There are some interesting posts there."
I've looked for this FB page, but can't find it. Could you tell me exactly what it's called - and/or the autoimmune disease you referred to?
Reason I'm asking is that I have some autoimmune conditions, plus arrhythmias and am wondering whether my heart problems are caused by an autoimmune disease. It could really help with diagnosis and treatment.
Bill, dont take this wrong, but Id fire that cardio. Ive fired 5 myself. Theyre all human and at times ignorant. Listen to your better half, shes spot on about the vagus nerve. Im living proof. Interesting that MDs tell us all the time that our hearts are fine, its a rhythm issue, and then go on to treat our symptoms and not the source. The problem is diagnosing the location as the vagus runs from your neck to your stomach, passing the heart. Ive heard several patients with AF say they could not tolerate Mag for its laxative effect. Well, thats exactly what you need then, to get cleaned out. When Im having PVCs, I take up to 800mg of mag and within an hour, Im fine. Also have gone to Kinesiologist for neck adjustment with very positive results. In the conventional medicine world of no concrete answers or cures for this condition, everything is on the table for me.
Magnesium can be dangerous for many people, certainly counter indicated for me, even if serum levels are low. I have a friend in ICU at present because of Mg IV.
If you continue to take oral Mg whilst your body is trying to expel it you could easily cause muscle dysfunction. In my friend's case she stopped breathing.
Please use supplements with care and check with your doctor and pharmacist before taking.
The diarrhea causes us to lose magnesium, rather than gain it, and also to lose other essential electolytes, especially potassium. If we get too low in potassium we are in a very serious position, and definitely needing the hospital's help. That doesn't mean we don't need, or can't take, magnesium; it only means that we need to take a different kind, or less, so we don't get diarrhea.
Hello Lcpatrol , sorry you are having this battle for credibility with doctors on top of everything else.
As CDreamer says, STARS are very helpful.
I spoke to Jenni at STARS after my AF diagnosis, and she suggested two heart rhythm specialists who are also experts in the autonomic nervous system, who would be suitable for my particular set of conditions. She could do the same for you.
Many doctors **think** they understand the autonomic nervous system, so it is wise to find the few who are experts in it.
I very much agree with you as I have all of these 'Pain in left shoulder, discomfort in chest, light headed, spikes in blood pressure, hiatus hernia' I feel that my AF and BP are controlled by my vagus nerve and digestive system.
Consultant at the Hypertension Centre decided that I am not truly hypertensive and have spikes so BP medications will not cure it and give me more in the way of side effects that other patients. Over time I have stopped verapamil and a diuretic and my losartan is down from 100 mg to 25mg and my BP is lower than it has been in 16 years. My last 24 hour monitor average was around 127/70.
I will mention Roemheld Syndrome at my next Hypertension Clinic visit next month and gauge his reaction.
Thanks Seasider 18. My BP is usually in the 120s/70s but every 2 weeks or so it spikes to 160+ /90+ . I agree that my BP medication doesn't seem to alter things much. Early days though so I'll keep monitoring things.
Interesting and hwk's comments below, thanks for posting, I need to look into RS more.
For those of us with PAF one tends to focus more on the Vagus Nerve. Just speculating but I wonder whether neck alignment is a significant contributing factor to AF as many here find that it can kick of at night when lying flat and propping the neck up with more pillows helps this.
I hold the view that PAF is caused only unusually by one factor but more likely several factors. I have therefore, once stabilised with Flecainide, worked on lifestyle and diet ad nauseam (sorry couldn't resist that pun!).
Ha, good one. As most of my episodes occurred at night, I did a few things. I use a large contour pillow with a flat pillow underneath. Also, research IBT, inclined bed therapy. And we ve all been warned about sleep apnea, another dangerous condition that is completely mistreated with those unbearable masks. Our bodies are trying to tell us that there is something serious going on with our oxygen levels in our blood with certain deficiencies and their answer is to force air down our throats! Learn the Buteyko method of breathing correctly at night. Lastly, I heat my neck for 30 minutes right before bed. I never could sleep on my left side. I do now.
Very useful again thank you, more homework to do! I had suspected sleep apnea but the test said no. I have for some time found it essential to have a window open at night (i.e. need more oxygen) and sometimes wake up with a thick head which is cleared by a brisk walk. Have a good day.
CD, "Magnesium can be dangerous for many people" You may want to change that to "few" ppl, That is quite rare for a naturally occurring mineral in food to be dangerous. Im not saying it doesnt happen, but what you just posted is anecdotal so while were at it, Ive yet to meet anyone who reported negative results with such a benign common mineral. Most ERs have Mag in that IV so patients cardio vert easier. Pharmacists and Doctors will not be helpful with any supplement because quite frankly, theres just no money in it. Mag was a life saver for me and continues to be to this day. You want to talk about muscle dysfunction, lets talk about Flec, Statins and Rate control meds. One warning I would give is be careful of what is in that supplement you take, many from China are filthy and should be avoided. There are some dangerous additives. I ve taken over 15 supplements for 6 years with absolutely no issue and replaced nearly every med I was prescribed. I still take 2 meds, but none related to AF. Good day
Thank you, I am very careful about what I take, both pharmaceuticals and supplementary and I use a blend of 'conventional' therapies and some quite unconventional therapies.
No I don't want to change the 'many' to a few. It is helpful for some and it is harmful for some - in larger quantities and the Mg in the IV in an ER drip is what caused the problem for my friend.
We have some very newly diagnosed people on this forum who are often scared, often ill informed and not nearly as confident as doing their own research or coming to their own conclusions as you and I may be so I am always alert to anyone proposing one line of treatment.
If you look back over my posts you will see that I also seek an alternative treatment to drugs, whenever possible, but I also like the treatments to be grounded in good science and preferably supported by trials, difficult I know with complementary therapy. I read a lot - huge amount about Magnesium therapy when I first joined this site and talked to a lot people, both in the medical world and complementary world, it certainly seems to be helpful for those with Lone AF but for those of us with co-morbidities, unfortunately life is not that simple.
I am not anti Magnesium as many people on this site have found it beneficial but taking it orally in large enough quantities cause diarrhea is, I think, not the way to go!
have found that bathing in a natural mineral salt is the best way to absorb minerals for me, but even bathing in Epsom salts is too strong for me.
You make some excellent points but I find I have no problem with CPAP treatment for obstructive sleep apnea, it has worked wonders for me and my QOL is vastly improved because of it, but then one man's meat is another's poison as my grandmother used to say!
Exercise certainly helps, if you can, unfortunately when my muscles stop working then I literally fall down - which can be tiresome.
I agree about oxygen and currently take HBOT - hyperbaric oxygen treatment which again I have found most beneficial.
I would much prefer to work with diet, exercise and lifestyle to affect my conditions but unfortunately there are times when only the drugs will allow me to function.
I will happily send you links to those people for whom Magnesium is contra-indicated - there are some 15,000+ known in the UK, should you be interested and link to reported case of Magnesium in IV in ER causing respiratory arrest.
The great thing about this forum is that we are able to share thoughts, experiences and the things that have helped us, or not.
Best wishes CD.
PS - Where in the world are you and it would be nice to know a little more about you, nothing to see on your profile.
CD, It really doesnt matter what we want, we have to rely on credible studies verified by facts. We cant make blanket statements without foundation. "Many" or "Few' must be backed up by percentages. I say the percentage of those who lack adequate amounts of Mag is over 80%. I will further state that those who cannot tolerate a common mineral that is vital to heart health is rare, less than 1%. 15k for a whole country is quite small. Bottom line, more are deficient in Mag than not. There are explanations for bad reactions to Mag, such as, if one is taking certain meds mostly heart meds, is out of balance with too much Calcium levels, your system is impacted by heavy metals and you are detoxing, you are dehydrated, yes, Mag could certainly be dangerous, as can other supps for those on meds. Why I advise everyone to be under the care of a trained professional.
Its not that Im anti CPAP, it serves a purpose for a dangerous condition. However, it is not a cure and is treating symptoms. The issue I take with it is we never get to the root cause and prevents the patient from addressing a larger issue that could eventually be fatal. Its impossible to know what is going on in every apnea persons life to diagnose in a simple sleep study. There could be some serious issues for that lack of oxygen in our blood. Forcing air into our lungs with mask , well, is a mask. Did you ever hear that those who use CPAP acquire "Center Apnea"?
CD, Im guessing from the speak here I am on the other side of the pond the Atlantic. I ve lived mostly in the Northeastern USA. Going on 63 yrs old. AF since 2010. First time was in a remote part of Mexico and very scary. After a few years of the basic allopathic treatment and going down what I call the medical rabbit hole, I decided to seek out alternative for various reasons. Here in the states disease management is not free, has high deductibles, co pays and very expensive, so I figured I had nothing to lose, "opposite healing" wasnt working. That was 2 years ago and since leaving meds behind Ive had one episode. I dont suggest my way for anyone but only to share what I believe has worked for myself and let others make their own decision. I always advise anyone getting off meds or changing to supplements to be serum tested and under the care of a trained professional. Good Day. JT
Thanks JT, that makes sense. Yes this started as a UK site but soon became international, contributors mainly UK, US & Australia.
I think we think along similar lines. As you are probably aware our NHS system covers most care, which we pay for through our National Insurance contributions. Unfortunately it is now failing to cover the demands on the service, is under resourced with a de-moralized staff - most of my family do or have worked in the NHS. My father all his life and managed he budget for a health authority in the 70's & 80's.
People here do sometimes pay privately, if you want to see anyone quickly you more or less have to nowadays! Costs for medical generally are much, much less than the US though and all prescriptions are either free or heavily subsidized.
That presents a problem re serum tests because the NHS will not fund any 'unnecessary' tests so Vit B12, D3, mineral tests etc, unless for essential diagnostic purposes - most people then really do not know how to go about getting a test privately and even then your GP or the nurse at the clinic would take the bloods i.e.- there are few private clinics outside of main stream medicine who offer this service, outside of London. So there are pros and cons for both systems but it seems both are currently in crisis.
I would like to consult a Functional Medical Practitioner but finding it very difficult to find one I believe qualified and knowledgeable in the UK and certainly within reasonable travelling distance - I spoke to my GP about this only this afternoon.
I started with AF originally in about 2006, diagnosed in 2007 - limped along until I fell across this site in 2013, with AF progressing and as I had POTS as well, was struggling to function. Attended AFA patients' day in 2013, learned more in 1 day than in previous 6 years and decided I needed to be much more proactive. Saw EP privately and then had 2 ablations which stopped the AF completely, but didn't recover as I developed Myasthenia gravis - probably exacerbated by either ablation but more likely Flec + Bisoprolol - known antagonists.
I have been clear of AF until recently - had episode of either AF, AFl or SVT with tachycardia OR according to GP analysis - combination of all 3. I suspect it to be triggered by the immune suppressant I am taking and am hoping it to be a one off. I do everything I can go be proactive about my health - diet, exercise, psychologically but without the immune suppressant I would be in BIG trouble!
Unfortunately magnesium supplements are known to cause respiratory failure in those with Myasthenia - which is what happened to my friend in the US last week but also means I cannot take any antiarrythmic drugs, heart rate drugs, need to be incredibly careful with anti-biotics - which I haven't taken for over 30 years anyway until last year when I had a serious chest infection because of the Myasthenia - because our muscles are weak anyway we can't cough up mucus which leaves us prone to pneumonia.
I find it ironic that Myasthenia is known as Mg - as is Magnesium!
So I have no alternative but to be very proactive and keep myself as a well as I can. Because I am immune suppressed I have to be doubly careful.
I looked up the Butekyo breathing - I understand the theory and have been practicing and teaching what I think is a very similar method which here we call 7/11 breathing - seems to work on the same theoretical basis of gas exchange and reflexes and certainly prescribed for anxiety. I was psychotherapist for 20 years so have a lot of coping techniques and have been studying complimentary medicines for the last 40 years. I have been using 7/11 breathing for at least 15 years and have recommended it on this forum many times.
By the way - to truly test magnesium levels you need a red blood cell test or a muscle biopsy test as magnesium will leach out of cells to maintain serum levels which means that serum levels may show good magnesium but cell levels will be deficient causing muscle spasms etc - which is why nearly all Mg'ers suffer dreadful muscle spasms and which is why I find the only effective and safe way of absorbing Mag is by bathing in mineral salt high in mag.
CD,Very sorry to hear that. That is a a double whammy and certainly limits your options for controlling afib. Is that called Graves also? I know 2 ladies here that have that with afib, both refused ablation and control now with supplements. I actually was so tired of hearing them fight afib, I even suggested ablation. They scolded me and kept searching for an alternative. One takes bugleweed and does acupuncture I believe.
As for health care, Thats why I refer to it as "Disease Management" and not Health Care. Not being cynical here, but this Pharma influenced Corporation is a complete fail. As long as there are huge profit based and not success based results in health care, we are doomed. What you describe in the UK has been happening in Canada for nearly 40 years. We are 30 miles from the border and 100 miles to Montreal. There is a constant stream of Canucks with cancer, afib, heart issues, dental etc, coming here and paying out of pocket due to the ridiculous wait time. The US brags that we have the greatest health care in the world. Unfortunately that has absolutely nothing to do with being healthy and evidenced by our IMR/ infant death rank of 31st in the world. The UK I believe is in the 20s?
Of course I risk appearing to be quite radical when I speak against meds. I am not anti med. I am however proactive to find a natural remedy first and Im still certain there is a natural answer for any condition, except a few like epilepsy and diabetes. . Meds give us that instant relief where supplements can take time. That doesnt mean meds will cure us, just relieve symptoms.
How do we contract all these conditions after the supposed miracle vaccines and modern nutrition?(
Ill skip vaccine issue for now, but I had only one my entire life and Id love to give that back. 35 kids in my area in the 1950s got Polio after receiving that shot. The total for the entire state was only 50.)
Theyve weakened our immune systems by stripping all the natural minerals out of soils and laced with chemicals here, so there is no "food" in our foods now. Heavy metals would be the first place I would look. I had all my mercury fillings replaced a few years ago and cant believe the difference now. My gums look like a babys. Also, root canals can leach poison into our systems and if its a heart tooth, a host of ailments can occur. To be honest I am on 2 meds for a condition that was not addressed after taking supplements for 1 year with no positive results. For afib, I believe that our hearts are negatively impacted by the strong meds they prescribe. Ablation does not have the test of time on its side either. There are certain ramifications such as dementia and cognitive brain function that is now showing up in alarming numbers. That is the major reason I seek alternative for afib. To be blunt, Id rather go with a heart attack then have someone changing my night pot and spoon feeding me strained peas. My results are proof meds fail and this condition can be controlled alternatively.
Yes, one good benefit from my insurance is serum tests are covered anytime 100%. Yes, I do the RCB test for Mg levels.
Most with AF are dealing with tachycardia not bradycardia. Mag doesnt usually have a rate control effect, but may actually thin your blood. Instead of reaching for the advil when I have a headache, 400mg of Mag is better.
Absolutely agreeing with you on that, as AF is a multifaceted condition. I always advise anyone to be tested before starting any regimen, meds or supplements. One size fits all doesnt work for most conditions, but there can be like kind successes. Bradycardia is nothing to play around with and IMO is more dangerous that Tachy, the heart can stop. As always , Im sharing my experience, its up to others to digest and research for their own situation, but facts are facts and we need to be consistent. Good day
Of course, One size fits all is what conventional medicine uses most of the time. There are meds specifically designed for this condition and without knowing any of the patients history/genetics/lifestyle, Cardios prescribe the same meds for all, most of the time.
Dr Gupta has an interesting video entitled The gastrocardiac syndrome - heart palpitations caused by the stomach - that discusses the connection between the stomach and heart - vagally mediated AF is associated with gastric distress - youtube.com/watch?v=zt4Cw-V...
Thanks for this Lcpatrol. Very interesting! I can so identify with these symptoms. I've been using a Magnesium spray for the last 6 months and it has definitely helped. I can lay on my left side now without my heart kicking up a fuss. I've also got control of my gastric reflux using almond milk. I'm convinced my AF is influenced by my digestive process and am trying to sort it out using kombucha and proviotics. I'm vegan so don't want to use the dairy options. Seems to be working and I'm actually losing weight for the first time in two years since my hysterectomy! The neck connection is interesting as well. Definitely going to do some research on this.
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Vagus Nerve and Palpitations
