Can Pots Syndrome Start All Over Again?

Postural Orthostatic Tachycardia Syndrome (POTS) is both mystifying and misunderstood by most anybody, including most doctors. A relatively new disease, POTS still lacks a set of universally followed, predefined handling guidelines. (This often results in confusion and frustration among patients and their physicians.)  Instead of regurgitating the little information about POTS that can be plant in medical textbooks, we decided to survey POTS patients (over 900 of them). Past combining the largest survey of POTS patients ever conducted, our feel treating the disease, and the about recent medical literature on the topic, we hope to help demystify the medical mystery that is POTS.

This guide – which we're calling the POTS Center – is intended to exist the about comprehensive online resource on POTS. The POTS Center will be constantly updated to reflect the about electric current literature related to POTS. This page includes an overview of the disease, along with the almost notable findings in our survey. Please don't forget that each section has a page defended to it, where y'all can notice more in-depth data. All content is written by i of MyHeart's volunteer cardiologists and then reviewed by at least ii others.

Then without further ado, we welcome you to the POTS Center – a pocket-size place on the internet where we combine real patient feedback with published information and our ain experience treating the illness – with the hope we tin can make the lives of those suffering from POTS a lilliputian easier.

To find experts in POTS around the United states check out XpertDox.

What Is POTS? A Brief Definition

POTS is a class of dysautonomia that affects the menstruation of blood through the body, thereby causing dizziness when standing. Technically, someone has POTS if their centre rate increases by 30 beats per infinitesimal or their heart rate is greater than 120 beats per minute within ten minutes of standing up.

The autonomic nervous system regulates involuntary actions that allow the body to function. When we stand, for example, the body needs to conform an entire gear up of processes to allow this. Upon standing, a pregnant amount of blood automatically falls to the lower torso. Autonomic reflexes ensure that blood gets appropriately distributed to the upper body by changes such as muscle tone, vessel tone, heart charge per unit, and pumping responses in the middle.

In that location is a range of diseases that affect the autonomic nervous organisation known as dysautonomia. POTS is 1 of them. In POTS, there is increase in heart rate and light-headedness on standing, as well as practice intolerance, fatigue, and a multitude of other symptoms. POTS may exist then severe that even normal everyday activities usually taken for granted such every bit bathing or walking may be severely limited.

Although anyone tin can be afflicted by postural tachycardia syndrome, it is by far almost prevalent amid woman in their teens, twenties, and thirties. There is a wide spectrum of POTS-like disorders that falls nether the umbrella of dysautonomia, several of which do not have the increase in heart rate.

Symptoms

POTS is most usually known for causing dizziness upon continuing. In some cases, patients actually faint when trying to stand, earning POTS the nickname of "the fainting disease". However, dizziness and fainting are just a few of the many oft debilitating symptoms POTS patients boxing on a daily basis. Additional symptoms include:

• Headaches
• Nausea
• Abdominal hurting
• Chronic Pain (General)
• Chest Pains
• Centre Palpitations
• Fatigue
• Shortness of Breath
• Insomnia
• Brain Fog
• Sweating Abnormalities
• Weakness
• Bladder Dysfunction
• Tremors

Co-ordinate to our survey, fatigue (95.2%) is the nigh common symptom – which isn't surprising considering the commonality of POTS and Chronic Fatigue Syndrome (CFS). Dizziness when standing is the second most common symptom (95.2%), followed by brain fog ( 93.1%), and eye palpitations (92.0%).

When reviewing these symptoms, information technology's no wonder POTS is called "the invisible disease" – nearly every symptom is subjective.It's important to recollect that although dizziness is the trademark symptom, POTS does a lot more than but make someone dizzy.

Of the symptoms, patients report fatigue to be the most problematic or troubling symptom associated with POTS. Fatigue is likewise to blame for many of the complications that come with POTS. For example, it's mutual for teenagers with POTS to have a hard time getting to school on time in the morning time. Patients too find it incredibly difficult to get out of bed at all. People suffering from POTS can notice themselves in a frustrating bicycle – they won't experience meliorate unless they're active, all the same they don't' take the energy to exist active. Frustratingly, with POTS the symptom seemingly preclude its treatment, i.e. information technology'due south very difficult not accept a sedentary lifestyle without enough energy to get out of bed, much less run several miles every day.

Dizziness (48.5%), encephalon fog (43.8%), headaches (37.1%), and chronic pain (34.ix%) were rated the most challenging symptoms after fatigue (71.8%). You can read more than virtually POTS symptomology hither. Brain fog is a unique symptom associated with POTS. Nosotros take a section dedicated to brain fog and POTS here.

Diagnosis of POTS

POTS is typically diagnosed through a variety of tests, the near common of which is called a tilt table examination. With this test, patients are strapped to a tabular array which is tilted to simulate the process of standing up by forcing claret from the upper torso to the legs. Tilt tables aren't available at all hospitals, and so some doctors diagnose POTS by monitoring changes in centre rate and blood pressure while the patient moves from laying down to standing up.

Diverse types of doctors tin can diagnose POTS, but our survey found that cardiologists nigh normally diagnose the illness. We should note that a big pct of respondents who selected "Other" indicated a neurologist diagnosed their status. Click hither to read our detailed section of diagnosing POTS.

Challenges Faced by People Being Diagnosed with POTS

Unfortunately, individuals oft face a number of barriers before and while being diagnosed with POTS. The reasons for this require farther research. Yet, it is currently far also difficult for patients with POTS to receive proper diagnosis and handling.

For example, Postural Orthostatic Tachycardia Syndrome is often misdiagnosed by doctors' as anxiety, panic attacks, depression, or some other psychological disorder. Of those surveyed, over 78% said it was suggested they suffered from a psychological not concrete, disorder when being diagnosed.

At that place is no medical evidence that people with POTS are predisposed to feet or panic attacks. On the contrary, existing literature suggests individuals suffering from POTS are as probable or less likely to have a mental disorder than the average population.

Another notable finding in our survey is the amount of time patients can suffer from frequently debilitating symptoms earlier receiving proper treatment. Nearly half stated it took more than 2 years to receive a diagnosis.

While we don't know the reason it'south so difficult for patients to receive proper handling for POTS, we can conclusively say that it's non because these patients aren't trying to empathize the cause of their symptoms.

Making this worse – and as is the instance with nearly whatsoever medical consequence – receiving a proper diagnosis is cardinal to improving POTS patients' quality of life.

Treatment of POTS

There are three primary treatments for primary POTS; nutrition, practise, and medication. Diets that are high in sodium and low in gluten take proven to be constructive in some patients. (Yous can find more on the best POTS nutrition here.) It's too important that those suffering from POTS exclude certain items from their nutrition, which you lot can read more than most hither. Exercise has likewise been proven to help patients accost some of the symptoms they experience. Yous tin can read more about how exercise helps in this section. Finally, several medications –  and combinations of medications – tin can assist to relieve POTS. Click here to read our in-depth section near treatments and specific medications used for POTS.

The About Effective Treatment?

In our survey, nosotros asked patients whatthey foundto be the most effective treatment for POTSin their experience. Over 53% indicated medication(s) were most helpful, followed by diet (11.1%) and exercise (10.v%). ("Other" was the 2d most common response, with over 25%. Nosotros hope to learn more well-nigh these treatments by working with the POTS community in the hereafter.) As physicians, we don't feel comfortable endorsing medication as the single all-time handling, because there'southward so much variation from patient to patient. The all-time course of action is to work with your doctor to detect a treatment plan that works for you. You tin discover scientifically-supported treatments and the corresponding literature in our department detailing POTS treatments.

Types of POTS

We cover the types of POTS in more particular here. In summary, POTS is divided into a few types – neuropathic and hyperadrenergic. Neuropathic POTS relates to a disorder in the nerves that forbid blood from being pushed back upward to the centre from the legs. Hyperandrenergic POTS is related to high levels of norepinephrine as the source of the symptoms. Furthermore, the disease can be classified as Secondary POTS. In this classification, the dysautonomia is a outcome of another condition or disease in the torso. Click hither to find a more than detailed explanation of the types of POTS.

What Causes POTS?

POTS is a very complex disease that can have many causes. Generally speaking, causes of POTS are broken down into two sections: main causes and secondary causes. Primary causes of POTS are frequently the source of the disease for younger patients. Some of the primary cause agents of POTS include nitric oxide, neuropathy, physical deconditioning, and diverse viruses. Secondary causes of POTS are when another disease or condition cause the disease. Some examples of secondary causes include:

• Anemia
• Adrenal Disorders
• Ehlers-Danlos
• Lyme Disease
• Tumors
• and many others

Read this section on "Causes of POTS" for a much more comprehensive list of causes along with supporting medical literature of each.

A Call For Awareness & Understanding

Some gauge that roughly 500,000 people in America suffer from POTS; however, with the difficulty associated with receiving a diagnosis there's no telling how many patients have POTS and don't fifty-fifty know it. While we don't have whatever short-term or easy solutions for these problems or homeopathic cures to provide, at that place are a few points worth making.

It's off-white to conclude that increasing awareness about this mysterious disease – not just amongst those who take POTS but among their friends, family members, and loved ones – helps the patients manage their condition and, possibly more importantly, believe they can overcome a challenging status.

It's this statistic that motivated us to create the POTS Center. We'd encourage yous to share this resources – or if not this resource, any medically accurate and helpful resource on POTS – with anyone you see fit. You never know who may have POTS merely, due to challenges mentioned above, never got the diagnosis that could help them regain control over their life.

About the Survey

The survey was conducted via Facebook Groups dedicated to POTS Syndrome. We asked that only people with an official diagnosis take function; however, no additional efforts were made to "proof an official diagnosis". Thanks so much to all of those that participated!

References & Resources

Review Articles

Adolescent fatigue, POTS, and recovery: a guide for clinicians. Kizilbash et al. A comprehensive review of POTS, mainly written for clinicians, excellently written.

Postural tachycardia syndrome (POTS). Raj. An first-class review article on POTS in a highly reputable journal.

Postural tachycardia syndrome: a heterogeneous and multifactorial disorder. Benarroch et al. A review article on POTS.

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Source: https://myheart.net/pots-syndrome/

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