Patient Stories

Because all that is not shared is lost

My experience of POTS & IV fluids

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 [...]

August 29th, 2020|19 Comments

Grace’s story of beating POTS

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 faint [...]

January 31st, 2020|3 Comments

How changing my diet helped my heart palpitations: Ivana’s story

In regard to your FB post I'd like to share what I've found to be related to less ectopics in terms of diet. First of all, four months ago I had an ablation for my SVT and due to going through massive panic attacks from the whole thing, my EP left me on Bisoprolol for a few more months. I am now on 1.25 mg and will taper off in the next 2 months. I noticed some pretty strange ectopics (5 in a row) [...]

September 2nd, 2019|10 Comments

How changing my diet helped my heart palpitations: Stephanie’s story

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 [...]

September 2nd, 2019|1 Comment

How changing my diet helped my heart palpitations: Amy’s story

I am writing to you to share my experiences with nutritional choices and ectopic beats. I have suffered from Paroxysmal Supraventricular Tachycardia and ectopic beats since 1994 (14 yrs old). I did not take my diet seriously until 2014, when my PSVT started getting worse, and I wanted to avoid ablation. I grew up eating the standard American diet. In 2014, I started taking magnesium supplements fr [...]

September 1st, 2019|11 Comments

L’s story of living with Lyme Disease

I got sick with Lyme Disease in 2012. I did get bites and presented to a doctor with the bulls eye rash, they gave my a week of standard antibiotics and a steroid cream and sent me on my way. I knew nothing about Lyme Disease at the time and unfortunately neither did the doctor I saw. I wish I knew what that rash meant at the time and got a course of doxycycline and would have been spared the comp [...]

May 19th, 2019|9 Comments

C’s story of living with Lyme Carditis

Dear Dr Gupta,  I saw your post on Facebook regarding wanting to hear from patients with Lyme disease. I thought I would get in touch as I think it's important to raise the profile of Lyme disease, and my initial contact was with cardiology which might be interesting for you. Clinical history: I have a long history of being bitten by ticks in Sweden, where I have received tick bites dozens of time [...]

May 8th, 2019|3 Comments

Holly’s story of living with POTS

I started feeling heart racing problems when I was about 8 and complained about it, I grew up knowing if I did a lot of physical exercise I needed to sit down so my heart would stop racing and hurting. In high school when I was about 15 I noticed I got dizzy when I stood up, I thought it was normal and learnt to live with it, and then I started to notice the fatigue and struggling to keep up with [...]

November 14th, 2018|2 Comments

J’s story of living with ectopic heart beats

I've had ectopics for 6 years. I also have SVT once-twice a year, but it does not bother me and my cardiologist says it is not dangerous. My ectopics cause a severe anxiety and agoraphobia. I try not to give up, but it's bigger than me. They go away when I work, when I do sports (I ride a horse everyday) but after that I just get nervous and start to panic. Usually I have 0-10 ectopics a day, but [...]

September 23rd, 2018|3 Comments

L’s story of living with ectopic heart beats

My ectopics are bad some days and not noticeable other days; caffeine is a definite no! I find that taking salt baths help with ectopics/palpitations, the bath salt contains magnesium, potassium and calcium and it’s absorbed into the system When they do happen, my ectopics feel like a pause and then a thud followed by a quiver type feeling until my heart rhythm returns to normal - sometimes I get [...]

September 23rd, 2018|0 Comments

A’s story of living with ectopic heart beats

I've had my ectopics for about 4 years, mostly PVCs. Magnesium helped tremendously to reduce them for about 3 years, and then they came back with a vengeance almost a year ago. Magnesium alone was not helping anymore. I had my cardiologist perform some more thorough testing including an echocardiogram and Holter monitor. It was confirmed that I was having hundreds to thousands of extra heart beats [...]

September 23rd, 2018|3 Comments

R’s story of living with ectopic heart beats

I've had them ever since my very first panic attack 25 years ago. I go through periods of time where I don't have any. Then, they come back out-of-the-blue and usually last for months. And then as suddenly as they returned, they suddenly disappear again. They often get worse during my cycle. [...]

September 23rd, 2018|1 Comment

G’s story of living with ectopic heart beats

Mine started when I was 20 I am now 64. I can identify certain triggers alcohol and caffeine being the main ones and cut these out of my life at a very young age . It has taken me until the last couple of years to believe anxiety/ stress has something to do with it but I do believe it does . I take a calcium channel blocker and magnesium taurate and although not gone have improved my condition dra [...]

September 23rd, 2018|1 Comment

S’s story of living with ectopic heart beats

I have read messages from the young and the old, people who endured Ectopics for years and some some like myself who have only recently become aware of them. I have tried just about everything, from the scientific to the bizarre, but nothing truly gets rid of them. I have come to the conclusion if they have been check and double checked by cardiologist and they are sure they are doing no harm, the [...]

September 23rd, 2018|0 Comments

I’s story of living with ectopic heart beats

I had an ablation 5 years ago after having 2 episodes of racing heart (4 hours at 210bpm). The ablation was s success but after it I started getting ectopic beats. I’ve had a further two ablations to try to alleviate the ectopics without success. For the past three years I’ve tried lots of things from magnesium to breathing exercises but nothing has helped . I get ectopics constantly and they can [...]

September 23rd, 2018|3 Comments

J’s story of living with coronary artery spasm

My first episode was while I was at work. I had been rushing around as we were very busy and short staffed but I had been sitting for half an hour when the chest pain started. So I was carted off to A&E and subsequently admitted, but not onto the cardiology ward as there were no beds. Fortunately my troponins were negative showing there had been no damage to my heart. I was sent home after bei [...]

September 22nd, 2018|3 Comments

B’s story of living with microvascular angina

I'm 36 years old. Mom of 2 precious children (7 and 5 years of age). I was an extremely active elementary school teacher but I am currently on disability since being sidelined by chronic angina in 2015. I am writing to share my story about living with coronary microvascular disease. It is notoriously difficult to diagnose and even more difficult to treat and unfortunately I have experience with bo [...]

September 16th, 2018|50 Comments

B’s story of living with ectopic heart beats, SVT and vagal AF

When your rhythm is a dancer Living with heart rhythm disturbances It started around four years ago. I am in the middle of my 40s, married, father of two children and successful in my job. I suffered from some kind of burnout due to heavy workload and as a consequence thereof I had some trouble with my stomach and heartburn. My GP sent me to hospital for some days to get a clinical internist check [...]

September 16th, 2018|20 Comments

Julia’s story of living with Lyme’s carditis and POTs

I’m extremely ill. Prior to 2010, I was a ballroom dancer and extremely active for 53. In june of 2010, I suddenly lost balance and coordination along with other symptoms. I went to the Cleveland clinic and all over trying to figure out what was happening. In 2011, I was diagnosed with pots. I kept asking why but no one was interested. I became home bound a lot and I needed help. I had horrible di [...]

September 11th, 2018|0 Comments

Lynne’s story of living with Lyme’s carditis

I first became ill July 2016 after a vacation in the woods. Never saw a tick but I had a small bullseye. I knew nothing about lyme disease so I never saw a doctor. I have almost all the symptoms of a tick borne illness. My chest pain and fast heart rate started in November 2016. My ECG changed but nothing was ever found linking my heart as the problem. I was told its stress, depression, esophageal [...]

September 11th, 2018|1 Comment

Wendy’s story of living with Lyme’s carditis and POTS

It was autumn 2015, and I didn’t realise anything was wrong until I woke up from what I can only describe as an ‘absence’; I was lying on my side, on my sofa, and I was confused, disorientated. I didn’t feel ‘right’. I wasn’t myself. Emotionally, I was numb. My behaviour had been erratic recently; that week I had literally pulled the hair out of my head in rage, and then spent several days staring [...]

September 9th, 2018|2 Comments

Chris’ story of living with Lyme carditis

In 2011, after a summer full of trail running in the Northeast US, and tons of tick bites including one that was fully engorged and tough to remove, I suddenly became very ill with a fever of 105, a pinpoint rash covering my entire body, and a swollen throat. Thinking I had strep, I visited a family doctor who informed me she thought it was Lyme and ran a basic ELISA test (which came back negative [...]

September 9th, 2018|1 Comment

Elizabeth’s story of living with AF and the Roemheld syndrome (Gastrocardiac syndrome)

I am 73 years old and have had A-fib and ectopic heart rhythms since 2016. The first paroxysmal A-fib event happened while I was bending over and twisting my neck in my garden. But since then, I have noticed that any straining of my neck may irritate it and later I will have an A-fib event. Also, I now notice that if I eat a big meal, or have indigestion, or bloating, my heart rhythm changes. It s [...]

September 8th, 2018|5 Comments

D’s story of living with the Roemheld’s syndrome (Heart palpitations caused by stomach issues)

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 [...]

September 8th, 2018|98 Comments
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