April 5, 2024

Disclaimer: The information provided here is for educational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, cure, or prevent any medical condition. Instead, use it as a starting point for discussion with your healthcare provider. Always consult with a qualified healthcare provider before starting any new medication, supplement, device, or making changes to your health regimen.
Living with dysautonomia and orthostatic hypotension means that something as simple as getting out of bed requires strategy. I remember the first time I almost passed out/fainted. I jumped up to catch a ringing phone and suddenly, my vision had white blotches, my ears were ringing, and I just couldn’t tell where I was in space. Now, that dizzying dance has become a part of my daily routine.
My days are carefully choreographed. I stand up very slowly. I shower with a chair beneath me, as the heat and the standing can send my blood pressure into a nosedive. I dress myself while seated, with clothes laid out on my bed to minimize the bends and twists of my body that could rock my very unstable boat. I measure my days by the number of steps I can take without feeling faint.
I plan my routes through stores, always looking out for places where I can sit or lean if all the blood in my head suddenly decides to visit my feet. Social gatherings are navigated with the precision of a strategist, claiming a chair with my bag right away, especially one with an ottoman where I can elevate my feet, and always positioning myself near a wall or a chair, just in case.
Midodrine is a sympathomimetic amine that is metabolized in the body to its active form, desglymidodrine, which activates alpha-1 adrenergic receptors and causes blood vessels to constrict (tighten). This medication is primarily prescribed to manage orthostatic hypotension (OH), a condition where blood pressure drops significantly upon standing. Usually, when we stand up, our autonomic nervous system (ANS) tells the blood vessels in our legs to tighten, preventing gravity from pooling the blood in our legs and taking it away from our brain. However, when the nervous system doesn’t work properly and the blood vessels don’t tighten when we stand up, blood rushes into our legs and abdomen, depriving our brain, which can lead to symptoms of lightheadedness, dizziness, and fainting.
Midodrine's ability to stabilize blood pressure has led to its off-label use in the management of conditions like postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance. These conditions are found frequently in people with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). By promoting better blood flow, midodrine provides a potential avenue for symptom management in these complex and multifaceted conditions, helping patients improve their daily functioning 1, 2.
Dysautonomia refers to a group of medical conditions that result from a malfunction of the autonomic nervous system. The ANS controls the 'automatic' functions of the body, such as heart rate, blood pressure, and digestion. Midodrine is primarily used to manage orthostatic hypotension, a common form of dysautonomia where blood pressure drops significantly upon standing 3. This sudden drop in blood pressure can lead to a variety of disruptive symptoms, including:
Dizziness or lightheadedness
Fainting or near-fainting spells
Blurred vision
Weakness
Fatigue
Nausea
For those experiencing dysautonomia as a secondary complication of Long COVID or ME/CFS, these orthostatic symptoms can be particularly pronounced. They often severely impact daily functioning, making routine tasks like standing in the kitchen or taking a shower feel like monumental challenges that require careful planning and pacing 4.
Midodrine itself is a pharmacologically inactive medication, commonly known in the medical field as a prodrug. Once ingested, midodrine is metabolized and converted in the body to its active form, desglymidodrine. Desglymidodrine directly activates alpha-1 adrenergic receptors located on the smooth muscle lining of blood vessels 5. This targeted receptor activation leads to several key physiological changes, including:
Vasoconstriction (narrowing of blood vessels)
Increased vascular tone
Elevated blood pressure
By activating these alpha-1 receptors, midodrine helps counteract the rapid blood pressure drop associated with standing up. This mechanism of action thereby alleviates the primary symptoms of orthostatic hypotension and helps maintain adequate blood flow to the brain, allowing individuals to remain upright and active much more comfortably.
Midodrine is effective in reducing the symptoms of orthostatic hypotension, thereby improving the ability of patients to safely engage in their daily activities. Its role in managing symptoms of dysautonomia secondary to Long COVID and ME/CFS is based on its proven ability to stabilize blood pressure, enhance vascular tone, and significantly reduce orthostatic intolerance.
Midodrine's safety profile has been well-established for its FDA-approved indication. Common side effects include:
Scalp tingling
Goosebumps
Urinary retention
Gastrointestinal discomfort
It is important to note that midodrine should be used with caution in patients with supine hypertension (blood pressure that is abnormally high while lying down). Because of its mechanism of action, midodrine can further increase blood pressure when a patient is in a horizontal position, requiring careful monitoring by a healthcare professional.
Whether you have been living with dysautonomia or orthostatic hypotension for years or have only recently been diagnosed in connection with Long COVID, ME/CFS, or EDS, midodrine is a medication that may prove beneficial. Its safety and efficacy in the management of orthostatic hypotension and other forms of dysautonomia, like POTS, can help address many of the symptoms, such as fatigue and dizziness, that you navigate every day. If you are interested in exploring midodrine as an option, consult with your healthcare provider or visit RTHM to learn how this approach can help combat autonomic dysfunction and support your path to better health.