Symptoms of multiple sclerosis (MS) can be hard to describe and even harder to measure, especially when they are new to you. One such symptom that many people on MyMSTeam discuss involves the feeling of head pressure.
“New symptom today,” one MyMSTeam member wrote. “Has anyone else experienced pressure in the front or top of your head?”
Knowing how to talk about subjective, harder-to-measure MS symptoms is a valuable skill. Being able to clearly explain how you’re feeling and what you're experiencing is an important part of your MS treatment and care. The more complete a picture you can paint for your health care provider, the better able they’ll be to determine what could be causing the pressure in your head and how best to manage it.
Head pressure is both an invisible and subjective MS symptom. The sensation of pressure can feel different to different people. This can make pressure hard to define and measure: The feeling can range from barely noticeable to unbearably painful, and everything in between.
This is how MS-related head pressure feels to a few MyMSTeam members:
A subjective symptom is partly defined by how it feels to a person. The other equally important part of the picture is how that symptom makes the person feel and how it impacts their life. MyMSTeam members have discussed this as well.
The severity of MS symptoms can wax and wane. Periodic worsening of your MS symptoms, called a relapse, may be a sign of increased disease activity or advancing disease progression, especially in the relapsing forms of the condition. For some, these MS relapses occur seemingly without rhyme or reason. For others, specific internal and external factors (called triggers) may lead to flares.
Some MyMSTeam members have reported that their head pressure seemed to be linked to other factors.
In MS, a person’s immune system malfunctions and attacks its own healthy tissues, causing inflammation in the central nervous system (CNS), brain, and spinal cord. This results in scar tissue (lesions) and demyelination (damage to the fatty insulation around nerves).
Lesions and nerve damage in the CNS can cause nerve dysfunction (neuropathy) by disrupting the proper flow of electrical signals between the body and the CNS. This can impact how a person processes, perceives, and responds to sensory information (i.e. smell, taste, sight, touch, and hearing). This can manifest in a variety of ways, which could include pressure in the head.
Dysesthesia may result from damage to nerves that carry information about one’s senses to and from brain. Sensory changes are often among a person’s first symptoms of MS.
The MS hug is a common form of dysesthesia. For many, it’s one of the earlier MS symptoms people experience. The MS hug, also known as banding or girdling, can feel like an unwelcome, uncomfortable hug from an invisible entity.
The MS hug is usually felt around the chest or torso, but some people feel the pressure and tightness around their heads. One member described their head pressure by saying, “It feels like a band wrapped around the left side of my head. Along with a steady, dull ache.”
Paresthesia refers to sensory changes caused mainly by pressure on nerves. Paresthesias include feelings of:
They’re not usually painful. Rather, they tend to be more uncomfortable and annoying.
Almost 25 percent of people with MS experience neuropathic pain, or nerve pain from demyelination. This can lead to long-lasting pain affecting the nerves in the CNS.
The trigeminal nerve is a large nerve that transmits nerve signals from the CNS to the mouth, face, and part of the head. Trigeminal neuralgia, or tic douloureux, is inflammation of the trigeminal nerve. TN causes sensory changes and neuropathic pain in and around the head and face in 4 percent to 6 percent of people with MS.
Neuritis refers to nerve inflammation. How it manifests depends on which nerves are involved, where they are, and the degree to which they’re impacted. Several major nerves, called cranial nerves, run across the face and the top and front of the head. Cranial nerve damage or inflammation could contribute to a feeling of pressure in your head.
The optic nerve relays visual messages to the CNS so inflammation or damage to or near it can cause blurred vision, double vision, loss of vision, and pain. Many people with MS experience vision problems caused by inflammation and nerve damage. Inflammation can also affect the tendons, muscles, and other tissues of the eye.
Optic neuritis, inflammation of the optic nerve, can affect people differently. The type of pain caused by optic neuritis, a condition common among people with MS, has been described by some as dull and throbbing, and by others as sharp and stabbing. Eye movement can aggravate or worsen these symptoms.
“I get this pressure in the roof of my mouth and bridge of my nose,” one MyMSTeam member shared. “No congestion. No headache. Not painful, just annoying. And it causes my vision to lose focus in my left eye.”
This member shared that their health care provider had ruled out a diagnosis of optic neuritis. They are still searching for an explanation for the mystery pressure in their head.
MyMSTeam is the social network for people with MS and their loved ones. Here, more than 180,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Do you experience head pressure? How does it impact your life? Share your experiences in the comments below, or start a conversation by posting on your Activities page.