Perfectly fine when lying down, but a splitting headache upon standing… Watch out for 'Intracranial Hypotension Symptoms'

When you opened your eyes this morning and were still lying in bed, you probably thought your condition was going to be wonderful today. However, the very moment you set your feet on the floor and tried to walk to the bathroom, a severe pain suddenly struck, feeling as if a heavy weight was violently pulling the back of your head and neck downward. Unable to stand any longer, you slipped back into bed, and like magic, within a few minutes, your head cleared up and the pain vanished as if it had never happened. It feels quite strange. You might have been searching the internet with a frustrated heart, wondering if you were just faking an illness or if a migraine could possibly toy with a person like this. Today, at Seoul Jeil Neurosurgery, we would like to unravel the secret behind these intracranial hypotension symptoms—a specific type of orthostatic headache that worsens uniquely when sitting or standing—as if we are sitting right beside you, having a quiet conversation.

Source: The Korean Headache Society, Clinical Characteristics and Diagnostic Guidelines for Orthostatic Headaches

Normally, when we say our head hurts, we tend to first think of a sensation where the brain feels completely full of pressure, as if it is about to burst. This is because expressions like "my blood pressure rose" or "the intracranial pressure became high" are familiar to us. However, this condition begins in the exact opposite situation. Our brain and spinal cord float inside a clear fluid called cerebrospinal fluid (CSF), which keeps them safely protected from external shocks. In a way, it acts as a natural airbag. But a problem arises when a microscopic hole or tear develops in the dural sac—the membrane that holds this fluid—and the fluid begins to stealthily leak out. As the total volume of cerebrospinal fluid decreases, the buoyancy that keeps the brain floating weakens. In this state, when we lift our bodies upright, gravity causes the brain to sag downward. At this time, the sensitive blood vessels and nerve membranes holding the brain are pulled tautly downward, triggering a splitting, excruciating pain.

Source: Seoul National University Hospital Medical Information, Pathophysiology of Spontaneous Intracranial Hypotension

In fact, a story of a female office worker in her 30s who visited our neurosurgery clinic comes to mind. She mentioned that just 10 minutes after starting her work while looking at the monitor at the company, her head felt like it was breaking and she felt so nauseous that she couldn't sit up at all. She said it was such an ordeal even to stand in line at a restaurant during lunchtime that she eventually ended up practically leaning and lying down on top of a closed toilet lid in the restroom, which slightly eased the pain and allowed her to barely get through the day. Hearing her say that she was perfectly fine when lying down but in agony when standing, people around her gave her uncomfortable looks, saying things like, "Aren't you just faking it because you don't want to work?" or "Maybe you should visit a psychiatric clinic." She suffered immense emotional distress because no matter how many migraine medications she took, they had no effect. It was only after she underwent a detailed examination, discovered a cerebrospinal fluid leak in her spinal region, and received appropriate treatment that she was finally able to stand up confidently and enjoy her daily life. Like this, there are truly many people fighting a lonely battle amidst the misunderstandings of those around them and pain from an unknown cause.

Source: Korea Disease Control and Prevention Agency Rare Disease Helpline, Patient Case and Clinical Course of Spontaneous Intracranial Hypotension

Commonly, when a headache is severe, people worry about scary diseases like a brain tumor or a stroke and seek out large hospitals. However, it is very common for them to return home feeling disheartened after being told that nothing is wrong on a computed tomography (CT) scan or a conventional brain magnetic resonance imaging (MRI). Because they cannot find the cause, they try to endure it by taking handfuls of strong over-the-counter anti-inflammatory painkillers, but unfortunately, intracranial hypotension symptoms have a completely different mechanism from typical vascular migraines or tension headaches, so painkillers are rarely effective. As the amount of leaking cerebrospinal fluid increases, the downward sagging force of the brain becomes stronger. Consequently, it doesn't just cause a headache; it can also be accompanied by auditory abnormalities, such as hearing a ringing sound (tinnitus) or a muffled sound as if it's coming from far away. A blurred vision or double vision where objects overlap, along with a stiff neck and a rushing sensation of nausea, are also typical signals that occur as the cranial nerves are pulled downward.

Source: Journal of Korean Neurosurgical Society, Analysis of Various Clinical Symptoms of Spontaneous Intracranial Hypotension

Therefore, you should clearly observe whether your headache worsens rapidly within approximately 15 minutes of sitting or standing, and whether the pain miraculously improves within 20 to 30 minutes when you lie horizontally and flat in bed again. Occasionally, it happens when excessive pressure is applied to the spinal membrane, creating microscopic cracks, after abruptly lifting a heavy object, coughing severely and continuously, or straining excessively in the restroom. Cases that occur spontaneously without any special trauma also account for a significant portion of the total patient population. If the symptoms are in a relatively mild, early stage, you might experience the good fortune of natural healing. This can happen simply by putting aside work or studies for a few days, maintaining bed rest where you lie completely flat, drinking more than 2 liters of water daily, and appropriately consuming caffeinated beverages to replenish the leaked cerebrospinal fluid and allow the tiny hole to close on its own.

Source: Asan Medical Center Journal of Medicine, Effectiveness of Conservative Treatment for Spontaneous Intracranial Hypotension

Nevertheless, if your symptoms do not show signs of improvement or the intensity of the pain actually worsens even after lying down for more than a week, it means the hole is too large to close naturally. In this case, you must consider more active neurosurgical treatments. At this time, the most representative and effective method is an autologous blood patch, namely an epidural blood patch procedure. In this approach, about 10 to 20 milliliters of venous blood is drawn from the patient's own arm, and then, while watching a radiological fluoroscopy device, this blood is accurately injected into the epidural space right outside the spinal membrane where the cerebrospinal fluid is leaking. The injected blood coagulates in that spot, acting like a natural adhesive to physically plug the torn hole tightly. Many patients experience a dramatic improvement where the orthostatic headache that tormented them for a long time noticeably disappears right after the procedure as the pressure of the cerebrospinal fluid is restored. Since the procedure time is relatively short and safe, there is absolutely no reason to blindly endure a headache of unknown cause and make the illness worse.

Source: Korean Journal of Anesthesiology, Treatment of Intracranial Hypotension Using Epidural Blood Patch

Frequently Asked Questions about Cerebrospinal Fluid Hypovolemia (Q&A)

Q1. It really doesn't hurt at all when I'm lying down, can this still be an intracranial hypotension symptom? A1. Yes, that is correct. Rather, the fact that the pain completely disappears or becomes very minimal when you lie down is the most decisive clue to differentiate this disease. This is because the influence of gravity disappears, allowing the sagging brain to return to its proper place, and the irritation applied to the sensitive membranes stops.

Q2. Why is there absolutely no effect even when I take general painkillers or migraine medications? A2. Over-the-counter painkillers usually contain ingredients that dilate brain blood vessels, reduce inflammation, or relieve muscle tension. Intracranial hypotension is a physical pressure issue where the brain sags due to a lack of cerebrospinal fluid, so the pain cannot be controlled with medication unless you plug the hole that is the cause or replenish the fluid.

Q3. What causes the cerebrospinal fluid to leak, and does it leave serious, permanent damage to the brain? A3. The spinal membrane can tear due to minor trauma, strenuous exercise, or severe coughing, and it can also occur without any particular reason. Since the disease itself does not destroy the brain cells themselves, you can recover completely without permanent brain damage once the pressure is restored through proper treatment.

Q4. I heard that drinking coffee or beverages containing caffeine helps, is this true? A4. Yes, it is true. Caffeine temporarily constricts cerebral blood vessels and stimulates the production of cerebrospinal fluid, providing supportive help in relieving pain. However, since this is only a temporary measure, it cannot replace fundamental treatment.

Q5. Am I able to return to daily life right after receiving the blood patch procedure? A5. Although the headache improves immediately right after the procedure, you must maintain bed rest, lying flat and straight on a hospital bed for at least 1 to 2 days until the injected blood settles firmly into the hole of the spinal membrane. Avoiding lifting heavy objects or bending your waist excessively for about a month is the way to prevent a recurrence.

Source: Severance Hospital Health Column, Proper Understanding and Management of Intracranial Hypotension

An excruciating headache that feels like the head is breaking can make the very act of standing up terrifying, completely shaking up a patient's life. In summary, the core of intracranial hypotension symptoms is a severe orthostatic headache that occurs whenever one stands up because the brain sags downward due to a cerebrospinal fluid leak caused by a crack in the spinal membrane, and it can be accompanied by tinnitus or double vision. In the early stages, one can expect improvement through fluid intake and bed rest. If the symptoms persist, you can return to your daily life safely and quickly through a blood patch procedure that plugs the hole with your own blood. Therefore, we advise you not to endure it foolishly and to receive a meticulous diagnosis from a neurosurgeon.

Source: Seoul Jeil Neurosurgery, Behavioral Guidelines and Summary Guide for Patients with Intracranial Hypotension