I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) six years ago. Over the past nine months however my condition deteriorated significantly to the point where I could no longer walk; I could only sit up for a very short amount of time and I would spend most of the day and night sleeping. My heart rate would randomly go up to 200BPM for no reason and my blood pressure would drop. I had no quality of life at all and I was basically just existing in my bedroom 24/7. At this point my Cardiologist recommended weekly IV saline infusions to try to help me regain control over my symptoms. I now have two litres of saline every week and it has completely changed my life. For thirty six hours after the fluids I can walk around independently and I experience hardly any POTS symptoms. It is the first time in six years that I can be on my feet for longer than a few minutes. Even though it’s only one day each week this has been incredible and greatly improved my quality of life. For a day I can walk around my house, spend time in the garden and carry out physiotherapy sessions. After a month of regular IV fluids I have begun to notice the long term permanent improvements starting to take effect. My fatigue has massively improved; I am no longer sleeping for most of the day. The severe headaches I have suffered for six years are considerably better. I can now sit up for longer periods of time without becoming symptomatic. IV fluids have also enabled me to carry out regular physiotherapy sessions each day and I am finally getting stronger. By continuing to use IV fluids in combination with physiotherapy I can hopefully build up to having a normal life again. I still have a lot of dreams that I want to achieve and for the first time in six years with the use of IV fluids and physiotherapy I finally have hope that I might be able to do this. Thanks to IV fluids I no longer just exist, I am living again. Thank you to Sam for sharing this brave and empowering story. For more information on POTS, please watch this video: Keywords: POTS; IV fluids; I.V saline
I have had SVT since I was 13, now 38. Luckily, my episodes are infrequent and am able to covert within a minute. I have noticed as I have gotten into my late 30s, I deal with ectopics during hormone fluctuations. I have been trying various diets in hopes of finding a way to keep the ectopics and SVTs away. I am not on any meds. Through trial and error, I have finally found what works for me…. 1. Staying hydrated (coconut water first thing in the morning and water throughout the day). 2. Gluten and dairy free 3. Daily exercise 4. Eating clean (fruits, veggies, lean protein) 5. No high fructose corn syrup, artificial sweeteners, or stevia. 6. Good quality daily multivitamin I have found that if I stick to these rules, I do t have any issues, even with hormone fluctuations
Thank you so much for bringing awareness to the stomach heart connection and validating what many sufferers of gastrocardiac syndrome know. I was diagnosed with paroxysmal atrial tachycardia ten years ago. During my episodes of arrhythmia, I burp and soon learned that if I burped enough the arrhythmia would stop; however there have been times when my vagus nerve was so stimulated I couldn’t expel enough gas to stop the arrhythmia, even with simethicone. These attacks can last 8-10 hours. During episodes my heart rate is irregular and forceful and if severe enough, my jaw aches. I’ve fainted twice flat on my back, knocking the wind out of me and interestingly the arrhythmia stopped as soon as I hit the ground. Luckily I haven’t had a severe injury, but it has left me a bit anxious about having another fainting spell. My cardiologist posits that arrhythmia causes the gas/bloating rather than gas/bloating causing the arrhythmia. I contend that if gas is merely a by-product of arrhythmia rather than the cause, then burping shouldn’t stop A-fib or PVC’s. Burping would merely expel the gas that’s created and the arrhythmia would continue. I was prescribed Metroprolol but it did not work for me. I’ve had a cardiac angiogram with excellent results. This is not a heart issue. Its unfortunate that Dr. Roemheld was not able to further his research on Roemheld Syndrome. I hope you can bring enough awareness to this debilitating condition so we can lead normal lives once again. I am otherwise healthy and in normal weight range. As Dr. Roemheld came upon this condition while researching caloric intake I’ve decided it’s best to be on the thin side of BMI. I am following all the do’s and dont’s related to GERD and am currently taking a PPI for 6 weeks to see if I can gain more control over this. Wish me luck:)
This post is also available in: हिन्दी (Hindi) POTS is a hugely debilitating condition which is characterised by an abnormally high heart rate when the patient adopts an upright posture. A lot of medical research has focused on trying to reduce the heart rate and this does seem to make a beneficial difference in patients with POTS. However virtually every POTS patient that I have looked after will complain of lots of other symptoms which are not related to an upright posture. These include lack of refreshing sleep, extreme fatigue, gut issues and temperature dysregulation. However one symptom that seems to bother patients the most is a symptom called ‘brain fog’ or mental clouding. These include diminished attention, difficult processing mental tasks and also reduced concentration. This mental fatigue Is often accompanied with severe physical fatigue. Whilst for many patients, the traditional meds seem to help, few of the commonly available treatments do much for the brain fog. In my own experience, whenever I have asked any of the experts about brain fog, the answer I get is if you can generally improve their POTS, their brain fog will get better. Another thing i have found to be useful is to give patients intravenous saline and often patients have turned and said that they have felt like a veil has been lifted off. The problems with IV saline however are two-fold – Firstly, the effects don’t last more than a day or two and secondly it does not offer a practical long term solution. In terms of other available medications, the medications which can help mental alertness are mostly stimulants. The main concern that doctors have using stimulants is that they could increase the heart rate and make things worse. This is where an interesting medication called Modafinil comes in. Modafinil is an FDA approved medication which is used for excessive daytime sleepiness in patients with obstructive sleep apnoea. It has also been shown to improve cognitive function and mood problems in patients with Narcolepsy. In addition, there is some evidence that it improves symptoms of depression, anxiety and irritability in patients with sleep apnoea. It does this by increasing levels of serotonin and glutamate the brain. The really interesting thing is that in 2014, a group of researchers decided to study this agent in a small group of patients with POTS (Kpayaeh et al, 2014) and found that Modafinil […]
Thank you so much for bringing awareness to the stomach heart connection and validating what many sufferers of gastrocardiac syndrome know. I was diagnosed with paroxysmal atrial tachycardia ten years ago. During my episodes of arrhythmia, I burp and soon learned that if I burped enough the arrhythmia would stop; however there have been times when my vagus nerve was so stimulated I couldn’t expel enough gas to stop the arrhythmia, even with simethicone. These attacks can last 8-10 hours. During episodes my heart rate is irregular and forceful and if severe enough, my jaw aches. I’ve fainted twice flat on my back, knocking the wind out of me and interestingly the arrhythmia stopped as soon as I hit the ground. Luckily I haven’t had a severe injury, but it has left me a bit anxious about having another fainting spell. My cardiologist posits that arrhythmia causes the gas/bloating rather than gas/bloating causing the arrhythmia. I contend that if gas is merely a by-product of arrhythmia rather than the cause, then burping shouldn’t stop A-fib or PVC’s. Burping would merely expel the gas that’s created and the arrhythmia would continue. I was prescribed Metroprolol but it did not work for me. I’ve had a cardiac angiogram with excellent results. This is not a heart issue. Its unfortunate that Dr. Roemheld was not able to further his research on Roemheld Syndrome. I hope you can bring enough awareness to this debilitating condition so we can lead normal lives once again. I am otherwise healthy and in normal weight range. As Dr. Roemheld came upon this condition while researching caloric intake I’ve decided it’s best to be on the thin side of BMI. I am following all the do’s and dont’s related to GERD and am currently taking a PPI for 6 weeks to see if I can gain more control over this. Wish me luck:)
Thank you so much for bringing awareness to the stomach heart connection and validating what many sufferers of gastrocardiac syndrome know. I was diagnosed with paroxysmal atrial tachycardia ten years ago. During my episodes of arrhythmia, I burp and soon learned that if I burped enough the arrhythmia would stop; however there have been times when my vagus nerve was so stimulated I couldn’t expel enough gas to stop the arrhythmia, even with simethicone. These attacks can last 8-10 hours. During episodes my heart rate is irregular and forceful and if severe enough, my jaw aches. I’ve fainted twice flat on my back, knocking the wind out of me and interestingly the arrhythmia stopped as soon as I hit the ground. Luckily I haven’t had a severe injury, but it has left me a bit anxious about having another fainting spell. My cardiologist posits that arrhythmia causes the gas/bloating rather than gas/bloating causing the arrhythmia. I contend that if gas is merely a by-product of arrhythmia rather than the cause, then burping shouldn’t stop A-fib or PVC’s. Burping would merely expel the gas that’s created and the arrhythmia would continue. I was prescribed Metroprolol but it did not work for me. I’ve had a cardiac angiogram with excellent results. This is not a heart issue. Its unfortunate that Dr. Roemheld was not able to further his research on Roemheld Syndrome. I hope you can bring enough awareness to this debilitating condition so we can lead normal lives once again. I am otherwise healthy and in normal weight range. As Dr. Roemheld came upon this condition while researching caloric intake I’ve decided it’s best to be on the thin side of BMI. I am following all the do’s and dont’s related to GERD and am currently taking a PPI for 6 weeks to see if I can gain more control over this. Wish me luck:)
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This post is also available in: हिन्दी (Hindi) POTS (postural orthostatic tachycardia syndrome) is commoner than we think. 1 in 3 people with a diagnosis of Chronic Fatigue Syndrome(CFS) or ME also have POTS. Similarly a large number of patients with Fibromyalgia probably also have POTS. In my practice, I have the privilege of managing the treatment of about 150 patients with POTS . I have found that lifestyle and behaviour change recommendations can be a very valuable and effective adjunct to pharmacotherapy in terms of both empowering the patient and helping improve overall quality of life. The aim of the lifestyle modifications are five-fold: To increase the amount of blood volume within the body To minimise pooling of blood in the legs by compression or strengthening the leg muscles To prevent further deconditioning To minimise adrenaline surges To correct any electrolyte, nutritional and hormonal deficiencies Here are some of the lifestyle measures that I recommend to all my patients who have POTS . It goes without saying that you should always check with your own doctor if the following recommendations are suitable for you Increase daily fluid intake to at least 3L of water a day. The fluid intake should be increased even more when fluid losses are higher such as during hot weather. I would also recommend drinking a couple of glasses of water first thing in the morning about 20-30 minutes before adopting an upright posture. Minimise loss of fluid by avoiding diuretics, caffeine, alcohol, and sodas. Increase daily sodium intake to 10-12g of sodium per day. This can be done by increasing salt intake by using more table salt on food but also by taking slow salt tablets. Salt will help retain more volume within the body. Without salt, all the extra water that is drunk will simply pass out in the urine. Increased salt intake can be distasteful for some patients and i advise supplementing electrolytes (such as 2 sachets of Dioralyte/day in divided doses) to water. Magnesium supplementation: It is estimated that 75% of the population is deficient in Magnesium. The Blood tests for magnesium are notoriously unreliable and therefore i usually recommend magnesium supplementation regardless of the blood test results. In terms of supplements, i advise my patients to avoid magnesium oxide but other commonly available magnesium supplements such Magnesium CItrate 200mg daily or magnesium taurate 125 mg bd work well. […]
This post is also available in: हिन्दी (Hindi) Hypothyrodism is a very common condition characterised by reduction in effective levels of a hormone called thyroxine. It is usually seen in women between the ages of 40-50 (but can be seen at any age) and is almost 10 x commoner in women than in men. It is estimated that about 1 in every 50 people you meet is overtly hypothyroid and it is estimated that there are many more people who are probably sub-clinically hypothyroid meaning that they probably have the process going on but it may not have manifest as significantly abnormal blood tests. It is also worth noting that often the symptoms come on gradually and are often missed by the patient and the doctor. As hypothyroidism is exceptionally common and because thyroxine plays a very important role in several processes in the cardiovascular system, I felt it apposite to do a blog on the effects of hypothyroidism on the heart. The first thing to say is that although, thyroxine is very important in the cardiovascular system, the deficiency of thyroxine does not really cause very prominent cardiac symptoms unless the deficiency is very severe indeed. Some cardiovascular symptoms that patients with hypothyroidism may manifest include: Exertional breathlessness and exercise intolerance A slow heart rate High blood pressure Swelling of the legs which is typically non-pitting meaning that when you press the swollen legs with a finger it doesn’t leave a very obvious indentation Fluid in the sac surrounding the heart which is termed a pericardial effusion. This is particularly important as it can be quite common and when it occurs it can get quite big and cause the patient symptoms of breathlessness and exercise intolerance. The hormone, Thyroxine, controls several enzymes which regulate how fast the heart beats and how strongly it contracts. Thyroxine is also responsible for how well the heart responds to hormones such as adrenaline. In addition, thyroxine is important because it relaxes our blood vessels and it also promotes the release of a compound called EDRF (endothelial derived relaxing factor) which also helps our blood vessels relax and all these processes can get affected when there is a deficiency of thyroxine. From a cardiac and circulatory perspective, the simplistic way to understand the effects of hypothyroidism is that everything slows down and everything gets stiffer. What this means is that hypothyroidism is accompanied with […]
This post is also available in: हिन्दी (Hindi) High blood pressure is a major health problem and affects about 30% of the adult population worldwide When the blood pressure is high and causing the patient damage then lowering the blood pressure can significantly reduce the risks of long term complications such as heart attacks and strokes. Currently the main strategies to control blood pressure are lifestyle management and medications. The problem is only 50% of patients have their blood pressure adequately controlled on medical therapy and 20-30% develop resistant hypertension meaning that they don’t respond despite multiple medications. In view of these problems, researchers have been very interested in developing novel ways of controlling the blood pressure. What we do know is that the kidneys play a central role in blood pressure control and in particular the nerves that supply the arteries to the kidneys influence blood pressure regulation. In particular, the sympathetic nerves supplying the arteries of the kidneys are crucially important. In the past when doctors have performed surgical sympathectomy they have found that the blood pressure falls. Scientists therefore became interested in working out if there was any way of intervening on these sympathetic nerves in the kidneys to achieve better blood pressure control. In their search they discovered an interesting observation and that is that these sympathetic nerves were actually every close to the inner walls of the renal blood vessels – only 2 to 2.5mm and therefore by delivering a heat to the vessel wall from within the lumen of the vessel it was possible to intervene/burn these nerves. This is what led to the development of a technique called renal artery denervation. In this procedure, a catheter is inserted into the renal artery and 4-6 bursts of heat energy are applied in a circumferential manner to the inner wall of the renal arteries. This application of heat energy is termed radio frequency ablation. Once the technology was in place the next step was to see if it worked buy consulting a research trial in patients. The first trial was called Symplicity-HTN-1. In this small study 45 patients underwent denervation. Their average office BP was 171/101 and this fell by an average of 27/17 at 1 year since the procedure was performed. The second study was Symplicity -HTN-2. In this study, 106 patients were studied and offered either the denervation or nothing. 84% of patients […]
This post is also available in: हिन्दी (Hindi)Introduction: Medical care for patients who have a diagnosis of POTS remains hugely unsatisfactory. POTS or rather dysautonomia is a very heterogenous condition. No two people are exactly the same. There is no one single aetiology that can even sometimes be identified. Often the patient who is really suffering looks alright from the outside. Many doctors, largely out of ignorance or perhaps arrogance, don’t even believe in the condition. Many don’t know enough about it to start treatment. Research into this hugely debilitating condition is only being driven by a handful of institutions with limited funding and a limited number of patients to recruit. Given the lack of big robust evidence, doctors tend to be unwilling to try out new medications which may through small studies have been shown to possibly benefit some patients. Because doctors are reluctant to try out new meds, we don’t develop any experience and the treatment of the patient remains stagnant. It therefore become imperative for patients with POTS to become as informed as possible and become their own advocates. In view of this today I wanted to talk about a medication which has been shown through small research studies to help some patients with POTS but one which is not being prescribed much because many people don’t know about it. This medication is called Pyridostigmine. It is also known as Mestinon. Pyridostigmine: The science: In POTS/dysautonomia, there is an imbalance between our flight and fright response which is largely mediated by adrenaline and noradrenaline and the contrasting rest and digest system which is medicated by a neurotransmitter called Acetylcholine. Much of the medications we use are designed to blunt or damp down the flight or fright response. However it is possible that if we exaggerate the rest and digest response we could achieve the same result in a different way and in so doing it offers us another therapeutic target. Acetylcholine which increases the rest and digest responses is broken down by an enzyme called acetylcholynesterase. If we had something which could stop the breakdown of acetylcholine by stopping the acetylcholinesterase enzyme from functioning, we could increase the rest and digest responses. This is where pyridostigmine comes in. Pyridostigmine is an acetylcholinesterase inhibitor and therefore should increase our rest and digest responses. Does it work in POTS? There was a paper published by Raj et al. in […]
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This post is also available in: हिन्दी (Hindi) One of my specialist interests is in a condition called POTS (postural Orthostatic Tachycardia Syndrome). This is a condition that affects young patients (more women than men) who struggle with severe chronic fatigue, an inability to stand up for a prolonged period of time, heart palpitations, brain fog, lack of refreshing sleep, IBS-like gut issues, fibromyalgia and chronic pain. Despite self management, lifestyle changes, and medications, patients still continue to struggle. I am always therefore interested in knowing about other possibly even unconventional medicaments that may become available and serve to improve symptoms and quality of life in my POTS patients. POTS is not a condition that many doctors know about, and therefore our understanding of its pathophysiology and potential treatments is still in its infancy and all the research that is coming out involves a very small number of patients and given this limitation, does not get adopted in mainstream daily practice. Naltrexone (like Naloxone) is an opioid antagonist and it therefore used in acute and chronic states of abuse. It is classically given in doses of at least 50mg to be taken daily. Whereas some agents have a linear dose-effect curve, Naltrexone is interesting in that it has different pharmacodynamic effects at different doses. This is called the ‘hormetic priciple’. Therefore different doses of Naltrexone may have different ‘beneficial effects on the body’. This is where the interest in lower doses of Naltrexone was generated. Naltrexone doses of 0.5-4.5mg daily are termed ‘Low dose’ Doses of < 1mcg/day have been termed ultra low dose Anything in between 1mcg/day to 0.5mcg/day are termed as Very low dose. In discrete low doses of 1-5mg/day Naltrexone acts as a glial modulator and in very simplistic terms reduces inflammation. Given these properties, there has been considerable interest in whether low dose Naltrexone may have beneficial effects in chronic inflammatory diseases such as Crohn’s disease, Fibromyalgia, Multiple sclerosis, cancer and even chronic pain states. I was interested in seeing if there is any evidence that LDN could help my POTS patients. Low dose Naltrexone (LDN) for Fibromyalgia There is some evidence that LDN may improve quality of life in patients with Fibromyalgia. The first study evaluated 10 women with symptoms. Patients were given 2 weeks of placebo followed by 8 weeks of 4.5 mg LDN with a subsequent 2 week wash-out period.Following completion of […]
In my mid-20’s my health started to take a turn for the worse, in so many different ways. My back pain that I had had from my mid-teens started to get worse and I was finally referred to a spinal surgeon for my scoliosis, and at 27 I had a spinal fusion. Following the fusion, my health continued to deteriorate; I suffered from digestive problems, heart palpitations, shortness of breath, near fainting, urinary problems etc. I attended the doctors with my list of symptoms, and following a lot of research, I believed I had the majority of symptoms of Hypermobile Ehlers Danlos Syndrome. I was dismissed at this appointment as having depression, and advised to go away and think about going on anti-depressants. This didn’t sit right with me and I decided to go to the Hypermobility Clinic in London for a consultation, unfortunately I had to pay for this privately. It was at this appointment that everything fell into place. Not only did they confirm that I had hEDS, but also suggested that I had POTS after checking my HR and BP on sitting and then standing. I was later referred to Dr Gupta at York Hospital and my first appointment with him was THE best medical appointment that I have ever had (and I’ve had a lot!). I cried actual tears of relief when I left, due to being listened to and my concerns being validated. I went through a number of tests in the coming months including a tilt table test, exercise tolerance, EKG etc, and it was then confirmed that I had POTS. Dr Gupta recommended three medications – Ivabradine, Fludrocortisone and Pyridostigmine. Also a magnesium supplement. Within a few weeks I noticed a HUGE improvement in my symptoms; I was no longer losing my vision and hearing on standing, I wasn’t as breathless, and my heart palpitations and chest pains became minimal. It was then that I realised just how long I had been suffering with POTS without realising. Looking back, I had the same symptoms when I was a teenager and they had often been put down to anxiety, and dismissed by many doctors. Within a few months of taking the medications, I decided that I wanted to try exercising again, as Dr Gupta explained that this could further help the condition. I started slowly with cycling on a stationary bike, and also throwing […]
Article courtesy of: Dr. Joel Kahn, MD, one of the world's top cardiologists, best selling author, lecturer, and expert in plant-based nutrition & holistic care. What is a coronary artery calcium scan (CACS)?u00a0 It is a simple CT of the heart performed without injection of any contrast dyes that permits the easy identification of calcification (plaque) in the three major heart arteries. By good fortune, the density of arteries is different than the fat they sit in and the muscle and blood that are nearby in the heart. Calcium comprises about 20 percent of plaque in arteries but is such a different density than the rest of the heart that even small amounts show up like a beacon of aging and damage in by just holding your breath for 10 seconds.u00a0
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