Living with Orthostatic hypotension 1
An inherited condition, also called dopamine beta-hydroxylase deficiency, that affects blood pressure and other automatic body functions.
Understanding Orthostatic hypotension 1
Symptoms come from a lack of norepinephrine, a chemical messenger of this nervous system. Signs can appear in infancy, such as droopy eyelids, low blood pressure, vomiting, dehydration, and low blood sugar, but diagnosis often comes in adolescence. Later, a sharp blood pressure drop on standing can cause dizziness, blurred vision, or fainting. GARD says symptoms may improve with treatment, and often worsen in adolescence if untreated.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood pressure drop on standing (orthostatic hypotension)
- Fainting spells
- Droopy upper eyelids (ptosis)
- Tiring quickly with exercise
- Fatigue and sleep problems
- Stuffy or inflamed nose (rhinitis)
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, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in DBH 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 may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Dysautonomia International
- 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
- 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 DBH gene cause this condition, leading to a lack of norepinephrine. It is inherited in an autosomal recessive way, meaning a child inherits a changed copy of the gene from each parent.
Also known as: congenital dopamine beta-hydroxylase deficiency; dbh deficiency; dopamine beta-hydroxylase deficiency; noradrenaline deficiency; norepinephrine deficiency; orthostatic hypotension 1, due to dbh deficiency
Patient organizations
- Dysautonomia InternationalOrthostatic hypotension 1 · United States
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