How Is A Pots Diagnosis Made
Problems with the autonomic nervous system can be difficult to diagnose. The standard test for POTS is the tilt table test. During the test, you are secured to a table that tilts from being horizontal to almost a 90-degree angle. The test measures your hearts response to switching from laying down to standing up. Some people with POTS faint during this test, even if they rarely faint standing up.
Although the test seems straightforward, many things can interfere with it. Its important that a POTS specialist oversees it. Its best to work with a doctor who has diagnosed and treated patients with POTS. This could be a cardiologist, a neuromuscular specialist or another doctor.
Do Cfs Subjects Have Orthostatic Symptoms
The study was completed by 39 CFS and 25 control subjects. All subjects completed questionnaires and submaximal exercise stress tests. Orthostatic complaints of Dizziness and Lightheadedness were scored while recumbent and after 5 min of standing. Dizziness and Lightheadedness were absent while recumbent and standing in 56% of controls and 15% of CFS indicating that portions of each group had no orthostatic complaints. Because the majority of control scores were 0, we initially defined a positive score as1. Controls and CFS were compared before exercise . While recumbent, Dizziness1 and Lightheadedness1 occurred in only 0/25 and 3/25 controls, respectively. In contrast in CFS, Recumbent Dizziness occurred in 15/39 and 18/39 subjects, respectively . After standing, 4/25 and 5/25 controls developed Dizziness and Lightheadedness, respectively. Again, more CFS had Dizziness and Lightheadedness after 5 min of standing . Incremental increases of 1 or more occurred in 4/25 controls and 25/39 CFS subjects for both Dizziness and Lightheadedness . Mean symptom scores were significantly greater in CFS than controls for Dizziness and Lightheadedness while recumbent, standing, and Symptoms . Therefore, CFS had significant Dizziness and Lightheadedness while recumbent and standing. OI was demonstrated by the dynamic increase in Dizziness and Lightheadedness after standing up.
Fig. 1
How Is Pots Diagnosed
POTS diagnosis can be complicated because the symptoms can affect a wide range of organ systems, and the most bothersome symptom for each patient may differ. In most instances, symptoms have been present for months before the diagnosis is made. Your doctor will perform a physical exam, order bloodwork and arrange a standing test or a head-up tilt table test to confirm POTS.
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New Forms Of Orthostatic Intolerance Popping Up
Peter Novak, MD, PhD, has been making the invisible visible.
Peter Novak, a board-certified neurologist, and autonomic nervous system specialist at Brigham and Womens Hospital in Harvard, is right in the middle of the ME/CFS/POTS/Lyme/Long-COVID soup. Hes become something of a specialist in making the invisible visible and uncovering new forms of orthostatic intolerance.
After linking hypocapnia to reduced blood flows to the brain in his own strange group of patients, he called the new condition hypocapnic cerebral hypoperfusion. Like his colleague David Systrom, Novak was being handed patients who just didnt fit the mold. In Novaks case, he was getting patients who had all the symptoms of POTS but who didnt experience heart racing upon standing.
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What Are The Symptoms Of Postural Orthostatic Tachycardia Syndrome
POTS symptoms vary from person to person and may include:
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Severe and/or long-lasting fatigue
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Intolerance of exercise or a prolonged worsening of general symptoms after increased activity
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A pale face and purple discoloration of the hands and feet if the limbs are lower than the level of the heart
POTS symptoms typically get worse:
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In warm environments, such as a hot bath or shower, a hot room or on a hot day
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In situations involving a lot of standing, such as waiting for a bus or when shopping
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If fluid and salt intake have not been adequate, such as after skipping a meal
POTS symptoms may also get worse when you get a common cold or an infection. In severe cases, POTS symptoms can prevent a person from being upright for more than a couple of minutes. This can greatly affect all aspects of personal, school, work and social life.
Although the origin of POTS symptoms is physical, sometimes people attribute the symptoms incorrectly to psychological disorders such as anxiety. While some people with POTS have anxiety disorders similar to the general population, POTS is not caused by anxiety.
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Ethics Approval And Consent To Participate
As already stated in the methodology section: The study was carried out in accordance with the Declaration of Helsinki. All ME/CFS participants and HC gave informed, written consent authorizing us to use their medical records for research purposes. The study of the use of clinical data was approved by the medical ethics committee of the Slotervaart Hospital, number P1736, Amsterdam, NL. The testing of HC was approved by the same ethics committee, number P1411.
Lf Bp Spectral Power And Total Bp Variability Is Increased In Cfsand Pots Before Tilt Compared With Control And Is Further Increasedafter Hut
There is enhanced vasomotor tone as indicated by increased BP variability in CFS and POTS compared with control. The data suggest an intact sympathetic vascular efferent arm of the baroreflex. Intact Valsalva phase II supports the inference. A separate contribution to increased BP variability may arise from decreased HRV. It is known that heart rate changes influence diastolic BP they may also exert an effect on systolic BP through changes in cardiac filling times and through the Treppe phenomenon. We believe that R-R interval variations serve to prevent rapid oscillations in BP, and decreased R-R interval variability destabilizes BP and increases BP variability. Enhanced sympathetic activity is consistent with results from other laboratories: Streeten defined the disease state of hyperadrenergic orthostatic hypotension with modestly enhanced norepinephrine and epinephrine plasma levels. Jacob et al. noted decreased blood volume associated with increased plasma catecholamines. Furlan et al. demonstrated increased muscle sympathetic nerve activity, increased LF/HF, and increased LF BP spectral power in their patients with chronic orthostatic intolerance and orthostatic tachycardia. These patients also had decreased HRV in the upright position.
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Onset Epidemiology And Natural History
Onset of symptoms of orthostatic intolerance often follows an infectious disease a relation to abnormalities in the inflammatory response have been proposed.1 Patients often slowly improve after the initial infectious illness, only to become ill again spontaneously or during an intercurrent infection.1 Approximately 75% to 80% of patients are women ranging in age from 14 to 50 years22 and therefore roughly span the ages from menarche to menopause. POTS is relatively uncommon in preadolescent children and may have a distinct pathophysiology in the very young. The reasons for sex preference are unclear, although women are known to be more vulnerable to orthostatic intolerance.23 Relations with the menstrual cycle or with altered estrogens or progestins are yet to be established.24 The illness may follow a remitting and relapsing clinical course, often enduring for years, but seems in many instances self-limited. Pregnancy may resolve abnormalities . Similar findings and clinical course have been described under a number of names, including the hyperadrenergic syndrome of Streeten25,26 and idiopathic hypovolemia of Fouad.27 As currently construed, POTS was first reported in adults.1,2831 Subsequently, pediatric cases of POTS were reported and showed that POTS is a common form of orthostatic intolerance during upright tilt in adolescents with chronic fatigue syndrome .32,33 There is evidence for POTS in adult CFS in 25% to 50% of cases.34
Who Treats Postural Orthostatic Tachycardia Syndrome
In many cases, your primary care physician is qualified to treat POTS. For complex POTS cases, it is often helpful to have input from a neurologist or cardiologist experienced in this condition. Rehabilitation physicians can help as well in developing an exercise plan that works for you.
Myositis and Neuromuscular Diseases | Q& A with Dr. Tae Chung
Neuromuscular rehabilitation specialist Tae Chung discusses neuromuscular diseases and how they are treated, including with rehabilitation. He also talks about treatment options for myositis and POTS, as well as the current research in the field.
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How Would You Describe Fatigue Associated With Pots
People with POTS experience fatigue differently. Many describe it as feeling beyond exhausted. Its as if your energy is completely depleted. The fatigue is probably hundreds of times worse than your worst flu. People with POTS may also have trouble concentrating and thinking straight. Doing simple tasks may feel like youve just run a marathon.
This fatigue might come and go, hitting you without warning daily, weekly or less frequently. For some people, extreme fatigue lasts for days. Others may experience periodic attacks. It can come on at any moment even if you just woke up. And there is no amount of sleep or coffee that can make it go away.
Orthostatic Tachycardia In Cfs Is Qualitatively And Quantitativelyindistinguishable From Orthostatic Tachycardia Associated Withpots
On the simplest level, these data show a relation between the autonomic findings in POTS and findings in CFS. This suggests that adolescents with POTS have symptoms similar in many respects to children with CFS, and have patterns of HRV and BP variability similar to children with CFS. I and my colleagues have reported HRV data before . Others have also reported a relation between POTS and CFS and have demonstrated an association with neurally mediated hypotension , although results are variable .
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Q: Why Is Pots Often Misdiagnosed
A: Many of the symptoms described above seem very cardiac-driven. However, at the hospital or ER, the doctors will find that the POTS patients heart is fine. Its actually the adrenaline thats producing a lot of these symptoms to compensate for a neurologic problem.
Often, patients have so many symptoms and are consulting so many different specialists that theres no cohesive assessment or treatment. In addition, POTS symptoms are often misdiagnosed as adrenal fatigue a term used to describe a group of symptoms when nothing else can be used to explain it.
Awareness of POTS in todays medical culture is limited. Recently, however, theres been a growing awareness of POTS thats evolving across the board. As the general population is learning more about it, the medical community is being educated as well.
Another Ang Ii Problem Crops Up Impaired Baroreflex Sensitivity
The Vanderbilt researchers didnt waste any time. The very next year, in Altered Systemic Hemodynamic & Baroreflex Response to Angiotensin II in Postural Tachycardia Syndrome, they investigated the impact of high Ang II levels in POTS patients.
They infused Ang II into POTS patients and healthy controls. As suspected ,the healthy controls responded to the increased Ang II with increased blood pressure: the POTS patients, however, did not.
That suggested that Ang II receptors lining the smooth muscles of the blood vessels were simply not responding well in POTS and that the desensitization hypothesis might be correct.
Interestingly, the study found that Ang II was, on the other hand, doing its job of retaining sodium. That indicated that problems with sodium retention were not causing the low blood volume seen in many POTS patients.
Then they found another possible high Ang II-related problem a balky baroreflex sensitivity response. The baroreflex response refers to the rapid changes seen in heart beat intervals when blood pressure changes. The heart should, in a matter of seconds, alter its beat in response to any changes in blood pressure. The diminished baroreflex sensitivity seen in the POTS patients was strongly correlated with increased Ang II levels. Since the baroreflex response impacts the heart rate, the researchers proposed that high Ang II levels likely contributed to the excessively high heart rate seen in POTS during resting and standing.
The Gist
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Patients Material And Methods
This was a retrospective study of patients referred between October 2012 and August 2020 to the Stichting CardioZorg, a cardiology clinic that specializes in the assessment and treatment of those with CFS and ME. All eligible participants had been referred by their general practitioners for the diagnosis of ME/CFS. Patients underwent a detailed clinical history, physical examination, laboratory analysis, ECG and echocardiography. Based on their symptoms, we established the diagnosis of chronic fatigue syndrome according to the Fukuda Criteria and myalgic encephalomyelitis according to the international ME criteria . In all patients, alternative diagnoses which could explain the fatigue and other symptoms were ruled out.
From the entire referred population, patients were selected for this study if the HUT and a CPET were available and performed within a 1 year interval. HUT was performed because of the clinical suspicion of OI. CPET was performed for a variety of reasons: assessment of the heart rate at the ventilatory threshold , to guide exercise activity , to demonstrate reduction of the exercise capacity on day two of a 2-day CPET protocol , and to assess the degree of disability for social security claims.
Postural Orthostatic Tachycardia Syndrome
Postural orthostatic tachycardia syndrome is a condition in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. It is a form of orthostatic intolerance , a type of dysautonomia. Other symptoms of an orthostatic nature occurring in response to upright posture may accompany the tachycardia. These include headaches, fatigue, sweating, nausea fainting and dizziness may occur. The autonomic nervous system is in charge of heart rate and blood pressure but it has become dysregulated. The female to male ratio of patients with POTS is 4:1.
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Thinking Outside The Box
This is the second of three posts on IVIG treatment and autoimmunity in chronic fatigue syndrome , POTS and fibromyalgia.
Findings in autoimmune dysautonomia are opening up new possibilities for POTS, ME/CFS and possibly fibromyalgia.
Its time to start thinking outside the traditional ME/CFS/POTS/FM boxes. Its possible that if youve been diagnosed with these diseases that you may actually have an autoimmune dysautonomia an autoimmune disease which has attacked your autonomic nervous system. It seems more and more likely that, given the proper testing, a significant subset of ME/CFS/FM/POTS patients will fit into that category.
Dr. Schofield at the University of Colorado and Immunoehealth, Denver, and Dr. Chemali of the Eastern Virginia Medical School, in Virginia, are two of the doctors leading the charge. In a Dysautonomia International video, Dr. Schofield called herself an autoimmunologist one of the few around. A lot of what she does, she noted, doesnt fit into the current silos in medicine, but then neither do her patients.
A recent study of IVIGs effectiveness demonstrated what kinds of patients these doctors are treating and how effective the treatments can be.
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Central Nervous System Symptoms And Hypocarbia
Many symptoms of orthostatic intolerance are related to reduced cerebral blood flow. Such symptoms had been demonstrated in adults and since by investigators in children.14,15 Symptoms are associated with inadequate systemic venous return to the right heart , although precise mechanisms remain controversial. In addition, cerebral autoregulation fails in relation to the onset of dyspnea, hyperpnea, and hypocarbia. Cerebral vasoconstriction in POTS ensues in affected individuals and may be diagnosed as hyperventilation syndrome or panic attack. Interestingly, similar respiratory signs can be produced in control subjects given sufficient provocation. The underlying cause of orthostatic hyperpnea remains obscure, but postural stimulation appears to be necessary, and interactions between carotid baroreceptor and chemoreceptors are probably the root cause.
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Clinical Characteristics Of A Novel Subgroup Of Chronic Fatigue Syndrome Patients With Postural Orthostatic Tachycardia Syndrome
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Objectives A significant proportion of patients with chronic fatigue syndrome also have postural orthostatic tachycardia syndrome . We aimed to characterize these patients and differentiate them from CFS patients without POTS in terms of clinical and autonomic features.
Methods A total of 179 patients with CFS attending one of the largest Department of Health-funded CFS clinical services were included in this study. Outcome measures were as follows: symptom assessment tools including the fatigue impact scale, Chalder fatigue scale, Epworth sleepiness scale , orthostatic grading scale and hospital anxiety and depression scale , autonomic function analysis including heart rate variability and haemodynamic responses including left ventricular ejection time and systolic blood pressure drop upon standing.
Results CFS patients with POTS were younger , less fatigued , less depressed and had reduced daytime hypersomnolence , compared with patients without POTS. In addition, they exhibited greater orthostatic intolerance and autonomic dysfunction. A combined clinical assessment tool of ESS 9 and OGS 9 identifies accurately CFS patients with POTS with 100% positive and negative predictive values.
Pots: A Little Known Cause Of Extreme Fatigue
Everyone knows what being tired feels like at the end of a long day. But some people experience fatigue so severe and so seemingly random that its hard to describe. If that sounds familiar, there could be more going on than daily stress.
While there are many causes of fatigue, one of them is frequently missed and misdiagnosed: postural orthostatic tachycardia syndrome . Physical medicine and neuromuscular specialist Tae Chung, M.D., answers questions about POTS and extreme fatigue as one of its symptoms.
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Exercise Diet And Medication To Treat Pots
While there is no cure for POTS, there are treatments available that can help manage symptoms and improve quality of life. Exercise training is one of the most commonly prescribed therapies and is very beneficial for improving POTS symptoms. Patients can start with activities that dont involve being upright such as swimming or using a rowing machine or stationary bike to avoid exacerbating their symptoms.
Other lifestyle changes include increasing fluid intake and adding extra salt to your diet, both of which have been shown to decrease POTS symptoms, and wearing compression stocking to help with blood circulation.
While some POTS patients can manage symptoms with lifestyle changes alone, others may be prescribed medications. Beta blockers are often prescribed, which work to tighten up blood vessels and keep the blood flowing.
POTS is condition that sadly goes undiagnosed for too long in many patients. But with a proper diagnosis and treatment plan, patients who have been plagued by the mysterious symptoms often for years can regain control over their lives.
