7.1. Variability in disease course and progression

← PREVIOUS: [[7. Prognosis and Future Outlook]] | NEXT: [[7.2. Impact on daily life and functioning]] → -------- ##### Summary >[!Summary] >- feature of POTS is cyclical nature of the symptoms[[#^1]] >- some patients have episodic symptoms, cycles of several days of intense orthostatic intolerance followed by a similar period when their symptoms are less[[#^2]] >- in a study, 29% reported that their symptoms have generally improved a little, 13% that it improved a lot, 10% reported no change in symptoms, 30% reported that their symptoms had worsened a lot and 14% that it worsened a little[[#^3]] >- 29% whose symptoms improved a little or a lot reported that medications were the predominant reason for this improvement ; 52% reported that nonpharmacological factors had also been helpful (in addition to medications)[[#^3]] >- a larger proportion of participants seen at an Autonomic Disorders Consortium site reported symptom improvement (54%) in comparison with those who were seen elsewhere (43%)[[#^3]] >- patients reported having to go to the emergency department significantly fewer times after their diagnosis of POTS[[#^3]] >- orthostatic tachycardia of POTS is exaggerated in the morning compared to the evening[[#^4]] >- physiologically normal for orthostatic tachycardia to vary slightly from day to day and for diurnal variability to exist such that greater orthostatic tachycardia occurs in the morning than later in the day[[#^5]] >- longer duration of symptoms before therapy has been associated with poorer longterm outcomes[[#^6]] >- clinical experience suggests that symptoms and function can improve with treatment, but many patients do not achieve permanent remission[[#^7]] >- the prognosis for people with the condition is variable[[#^8]] and difficult to ascertain due to the heterogeneity and our incomplete understanding of the underlying pathology[[#^9]] >- the majority of POTS patients may experience improvements in their symptom severity, while symptom progression and complete recovery are evident only in a minority[[#^9]] -------- >*“Another *([p. 2](zotero://open-pdf/library/items/I4WAD8AG?page=2&annotation=KSAQ69Z5)) feature of POTS is the cyclical nature of the symptoms.” ([[Low-2009]], [p. 3](zotero://open-pdf/library/items/I4WAD8AG?page=3&annotation=ZCK77MW7))^1 >*“Others have cycles of several days of intense orthostatic intolerance followed by a similar period when their symptoms are less. Some patients have episodic symptoms at rest associated with changes in BP and HR that are unrelated to arrhythmias. The HR alterations are typically a sinus tachycardia, although a bradycardia can occur.14 Fatigue can be a problem during these episodes. Some describe periods when they have trouble retaining fluid, in spite of heavy intake.” *([[Low-2009]], [p. 3](zotero://open-pdf/library/items/I4WAD8AG?page=3&annotation=935TM7YM))^2 >*“Compared to when their symptoms started, 1702 (42%) patients reported that their symptoms had generally improved a little (n = 1167; 29%) or a lot (n = 535; 13%). Ten per cent (n = 400) of participants reported no change in symptoms. Additionally, 1756 (44%) patients reported that their *([p. 5](zotero://open-pdf/library/items/48AJ3KVL?page=5&annotation=DMY8E3WQ)) symptoms had worsened a lot (n = 1197; 30%) or a little (n = 559; 14%). Almost two-thirds of respondents (n = 2552; 63%) believed they have always had a tendency to have POTS-like symptoms for most of their lives. Nearly, one-third (n = 490; 29%) of participants whose symptoms improved a little or a lot reported that medications were the predominant reason for this improvement. A majority of participants reporting some improvement (n = 876; 52%) reported that nonpharmacological factors had also been helpful (in addition to medications). A larger proportion (P < 0.001) of participants seen at an Autonomic Disorders Consortium site reported symptom improvement (n = 187/347; 54%) in comparison with those who were seen elsewhere (n = 1974/3476; 43%). Participants reported having to go to the emergency department significantly fewer times after their diagnosis of POTS (paired difference in visits: 1.7 (95% CI: 0.9, 2.7; P < 0.001), although they still averaged 8 ± 20 visits postdiagnosis.” *([[Shaw-2019]], [p. 6](zotero://open-pdf/library/items/48AJ3KVL?page=6&annotation=277BGXWJ))^3 >*“The orthostatic tachycardia of POTS is exaggerated in the morning compared to the evening.” *([[Garland-2015]], [p. 3](zotero://open-pdf/library/items/CAWTWYLR?page=3&annotation=26VRQ6YM))^4 >*“It is physiologically normal for orthostatic tachycardia to vary slightly from day to day and for diurnal variability to exist such that greater orthostatic tachycardia occurs in the morning than later in the day.”* ([[Raj-2022]], [p. 1](zotero://open-pdf/library/items/YN8BG2FZ?page=1&annotation=D3WEA95S))^5 >*“longer duration of symptoms before therapy has been associated with poorer longterm outcomes”* ([[Raj-2022]], [p. 2](zotero://open-pdf/library/items/YN8BG2FZ?page=2&annotation=8BKJSFGW))^6 >*“clinical experience suggests that symptoms and function can improve with treatment, but many patients do not achieve permanent remission”* ([[Raj-2022]], [p. 2](zotero://open-pdf/library/items/YN8BG2FZ?page=2&annotation=ZW4J6ZQQ))^7 >*“The prognosis for people with the condition is variable, but at least a quarter of those diagnosed are unable to work, with QoL and functioning significantly affected”* ([[Knoop-2023]], [p. 2](zotero://open-pdf/library/items/P2VFKVHY?page=2&annotation=MDJI2SW3))^8 >*“The ([p. 8](zotero://open-pdf/library/items/HLELIN7I?page=8&annotation=QHI5CX6H)) prognosis of this condition is difficult to ascertain due to the heterogeneity and our incomplete understanding of the underlying pathology. Nevertheless, insights on the prognosis can be gained from the reports from several centers. A prospective, longitudinal study of 56 patients who were treated at the Mayo clinic with a combination of nonpharmacologic interventions and β-blockers (54%), fludrocortisone (24%) or midodrine (17%) found improvement in 70% of patients, while 30% became worse after 1 year of treatment.82 A retrospective review of POTS patients from the same clinic showed symptomatic improvement in up to 80%, although only 33% were managing recreational activities 5 years after diagnosis and 73% were still requiring treatments.83 Questionnaires returned by 172 of 502 patients from another retrospective study indicated symptom resolution in 19%, improvement in 51% and unchanged or worsened symptoms in 12% of POTS patients at 5 years.84 Thirty-one percent of patients responding to a phone questionnaire reported being asymptomatic ~10 years after their first consult.85 Taken together, the majority of POTS patients may experience improvements in their symptom severity, while symptom progression and complete recovery are evident only in a minority.”* ([[Wells-2017]], [p. 9](zotero://open-pdf/library/items/HLELIN7I?page=9&annotation=EVS8G2TX))^9 >![[Sandroni-1999-4-x303-y81.png#invert_B| 400]] >([[Sandroni-1999]], [p. 4](zotero://open-pdf/library/items/X25GXI7E?page=4&annotation=MU6S65Q8))