Patients with autonomic dysfunction such as POTS often have a very difficult time dealing with chronic fatigue and pain. Despite the multiple treatment options, many treatments are limited and patients still struggle to maintain a normal quality of life. Unfortunately, this may lead to disruption of routines such as going to school or participating in social activities.
POTS is typically highly frustrating for both patients and their families. The time taken to just get a diagnosis can be very long, usually with a lot of useless medical interventions and tests along the way. Symptoms may often be dismissed simply because doctors are not familiar with POTS or its symptoms and they don’t know how to evaluate for it or treat for it. This is frustrating for both patients and their families. Therefore, once the diagnosis of POTS is finally made there is a lot of relief.
The problems associated with a misdiagnosis of POTS are not trivial. Missing school due to untreated symptoms can often lead to missing opportunities to advance academically and thus missing out on pursuing chosen careers. Often lengthy periods of time taken out from school can lead to schools considering this as truancy and even forcing court involvement into what is seen as neglect. For this reason, education of school and other officials is important.
The road after a diagnosis is long and frustrating also. Once a diagnosis is made and a treatment plan commenced there may be an initial improvement in symptoms, however, some symptoms may continue to be present. In addition to patients having a reduced quality of life, parents and other family members also experience significant difficulties, as the POTS will become a central part of the family life.
Decreased participation in physical activities can lead to physical deconditioning which is known to lead to worsening of the symptoms. Decreased participation on social activities can lead to social isolation, and subsequent lowering of confidence. This is made worse by the fact that POTS patients may avoid social activities because they are anxious about symptoms occurring.
The initial goal of a POTS treatment program is to improve symptoms and increase quality of life. But it’s important that the goal is to return POTS patients to a normal quality of life that involves returning to usual work and social activities. Treatment of POTS is not based around any single medicine, but rather an entire lifestyle change. This involves alterations in dietary and sleep patterns. Avoiding triggers, learning to manage symptoms and altering daily routines are key. Initiation of a gradually structured exercise program is critical. Initiation of medicines may be required, and often a trial and error approach to see which ones work and which ones are tolerated without side effects.
The fact is that these goals can only be achieved by the input of care teams experienced in the management of POTS. These teams should be aware of the challenges faced and experienced in individualizing care. For those patients with a predominant contribution of chronic pain to their symptom, comprehensive pain rehabilitation programs are key. Support groups may also be a useful component in a care plan.
The good news is that whereas years ago there was hardly an acknowledgement of the existence of POTS, there is now a large body of medical literature that has highlighted not only the condition, but also the fact that it is relatively common. It is also proven that there are treatment options that can lead to a significant improvement in the quality of life for POTS patients and hope that the majority of POTS patients can achieve a return to normal or almost normal functioning.