Living with Postural orthostatic tachycardia syndrome
A rare genetic condition in which standing up causes dizziness, a fast heartbeat and tiredness because of a problem with a nerve chemical transporter.
Understanding Postural orthostatic tachycardia syndrome
When a person goes from lying down to standing, they can feel dizzy, have palpitations and a fast heartbeat, feel tired and have blurry vision, even when blood pressure stays normal. Fainting, confusion and shortness of breath can also occur. It is caused by a shortage of the norepinephrine transporter, which leads to high norepinephrine levels in the blood. It starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Fast heartbeat on standing
- Dizziness
- Palpitations
- Tiredness (fatigue)
- Blurred vision
- Fainting
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in SLC6A2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Dysautonomia International and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Dysautonomia International, Global Autoimmune Institute
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Dysautonomia International and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the SLC6A2 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: chronic othostatic intolerance; familial orthostatic tachycardia due to norepinephrine transporter deficiency; irritable heart; orhtostatic intolerance; orthostatic intolerance due to net deficiency; postural orthostatic tachycardia syndrome due to net deficiency
Patient organizations
- Dysautonomia InternationalPostural orthostatic tachycardia syndrome · United States
- Global Autoimmune InstitutePostural orthostatic tachycardia syndrome · United States
- Dysautonomia Support NetworkPostural orthostatic tachycardia syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Postural orthostatic tachycardia syndrome.
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