Social Media Used to Study Migraine Symptoms

We all know the basic symptoms of having migraines. Sensitivity to light and sound, nausea, skin is sensitive to the touch, smells can be overwhelming. But have you ever heard of hallucinatory symptoms associated with migraines?

What are hallucinations?

When you hear the word “hallucination,” you may imagine taking mushrooms or LSD and seeing purple elephants and unicorns. But in the most basic form, a hallucination is something that is perceived to be present that is actually not.

A definition from Dr. Sacks

Famed neurologist, Dr. Oliver Sacks, wrote an entire book on the matter based on his observations with patients of all kinds. Some hallucinations were drug-induced, while others were not. “Hallucinations are defined as percepts arising in the absence of any external reality - seeing things or hearing things that are not there.”

Do hallucinations occur with migraine?

Migraineurs experience hallucinations, sometimes without realizing it. There are three main types: olfactory (smelling), auditory (hearing) and gustatory (taste). Have you ever smelled cigarette smoke or burning rubber (olfactory)? What about music being played on repeat or a high-pitched tone (auditory) that fades away before a migraine hits? Ever have a metallic taste in your mouth (gustatory)?

What causes these symptoms?

Some of these symptoms can be explained. Maybe you have tinnitus and often have a ringing in your ears. Or a certain medication might cause a metallic or blood-like taste in your mouth. But sometimes these phenomena don’t have a medical cause. That’s when it could be a hallucination.

The small of smoke is my attack warning

I occasionally smell cigarette smoke when I’m nowhere near a smoker. I ask the people around me if they smell smoke and they look at me crazy. That’s when I know I’ll get a bad migraine in the next few hours or days.

If you’ve never heard of this, don’t be surprised. Most neurologists and headache specialists don’t ask their patients if they experience any of these symptoms. And sometimes a patient brushes it off, not wanting to mention it for fear of seeming a little looney.

Can social media tell us more?

At the American Headache Society (AHS) conference in San Diego June 9-12, Dr. Cynthia Armand from the Montefiore Headache Center presented findings of a study that used social media to gather data on olfactory, auditory and gustatory hallucinations in migraine patients.

Hallucinations are underreported

Dr. Armand explained that social media is a unique tool to study these migraine symptoms that may not be readily recognized. They are not typically included in traditional patient screening and are underreported by patients.

Which channels were used? The researchers teamed up with a social media migraine outlet to ask their audience of about 200,000 members to report sensory symptoms three times per week for three weeks. Information was gathered from Facebook, Twitter, and Instagram. Facebook garnered the most responses. Using social media was found effective in research because the data was in real-time and patients had less of a filter than with their doctors.What were the findings?The study found that of the 678 responses, olfactory hallucinations were the most commonly reported. Patients smelled cigarette smoke, cat urine, cleaning products, food aromas, and perfume. Auditory hallucinations were next with patients experiencing ringing, pulsing, buzzing, and even music, typically classical. Gustatory hallucinations were the least common with dry, unpleasant, blood and food-associated tastes being reported.Was social media helpful?In conclusion, the research shows that social media can be a vital tool in collecting data, and neurologists and headache specialists need to include these symptoms as part of their intake surveys.Have you ever experienced one of these symptoms? And have you told your doctor about it?

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