Living with Malignant hyperthermia of anesthesia
A severe reaction to certain anesthesia drugs that causes high body temperature and muscle stiffness.
Understanding Malignant hyperthermia of anesthesia
Signs include a very high body temperature, fast heart rate, fast breathing, too much acid in the blood (acidosis), muscle stiffness, and breakdown of muscle tissue (rhabdomyolysis). People at higher risk are said to have MH susceptibility. It can show up at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Very high body temperature (malignant hyperthermia)
- Fever
- Muscle stiffness
- Painful muscle spasms
- Fast breathing
- Fast heart rhythms
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 RYR1 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
RYR-1 Foundation 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: RYR-1 Foundation
- 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 RYR-1 Foundation 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
Susceptibility may be caused by changes in any of several genes, including RYR1. It is inherited in an autosomal dominant way, so a change in one copy of the gene can be enough. People with certain inherited muscle diseases, like central core disease and multiminicore disease, are also susceptible.
Also known as: anaesthesia related hyperthermia; anesthesia related hyperthermia; anesthesic-triggered malignant hyperthermia; hyperthermia of anaesthesia; hyperthermia of anesthesia; malignant hyperpyrexia
Patient organizations
- RYR-1 FoundationMalignant hyperthermia of anesthesia · United States
- Malignant Hyperthermia Association of the United StatesMalignant hyperthermia of anesthesia · United States
You are more than your diagnosis
Perspectives from people navigating life with Malignant hyperthermia of anesthesia.
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