Social Media Used to Study Migraine Symptoms

By Katie M. Golden

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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Join the conversation

seraphimgen
I have certainly had the smoke or burning smell, which leads others to think I'm just a little off the planet.. usually in a few hours I am, with pain. Sometimes there is the smell of cooking, either a fish smell or sometimes even a curry. I like curry.. and can't find it! I don't think my doctor would take any of these symptoms seriously, he would just likely brush it off with a polite "ok,and what else", and not make notes or any observations.
1. leilanisiplon
 Oh my goodness. I thought I was going crazy. I swear I heard my husband say something twice, and he didn't. We got into a fight because of it. This has happened more than once, and I just chalked it up to my prodrome/confusion aura. Another thing that happens sometimes is a metallic taste in my mouth. I don't recall if it happens before or during my episode though. I didn't give it too much attention.
2. Katie M. Golden Moderator
 Seraphim, Having the olfactory hallucinations really can't be treated. You should tell your doc just so it's in your records, but you're right. Your doc is likely to do anything about it. -Katie
Katie M. Golden Moderator
Leilani, I'm glad you read this and now you know, it's not just you! -Katie
lizflynn
Olfactory and hallucinations is a reality for some but before you decide with certainty that there is no real source of the smell please consider that some migraineurs often have a natural and/or migraine related heightened sense of smell, and that fumes can travel beneath and above walls from one property to another in a building with shared walls; and through windows (open or closed)/AC units/doors etc. I say this because I used to think I was occasionally "imagining" cigarette or burning smell but realized that it was various neighbors who smoke while relaxing indoors and out.
1. lizflynn
 "Olfactory hallucinations" (the *and* in 1st sentence is a mistake).
2. I am with you in this, I get that for some people there may be no actual sources to the smells, but I can always trace the smells to a source, and from prodrome through the end of the whole cycle, my sense of smell is as if I were blind or deaf. Since I first read about the hallucinations and the olfactory ones, I have had the same reaction. Tinnitis has just recently been added to my issues, which may be medicines. It's starting to really bother me. Cheers!
Katie M. Golden Moderator
Liz, You make a really good point! -Katie
wendyd
Yes, to cigarette smoke, scents of fresh from the oven hot chocolate chip cookies, various bad scents, and cooking gas - the cooking gas scent was strong enough I called the Fire Sept. Rarely sound, but I spent an hour continuously checking my cell phone once because I could swear I heard it ringing.
peggy-wildsmith
Bananas.. I smell bananas and see clusters of blue bubbles and thin red zigzag lines. Thought I was going crazy but am now pretty nonchalant about it.
Finding this site has been such a life-saver (and mind-saver too!) for me! I used to think I must be off my rocker (and most of my co-workers did too I'm sure!). I would smell cigarette smoke in my office (which was in the center of the hospital nowhere near any windows); I hear noises in my house - sometimes like an old time music bar - other times I would SWEAR I hear cicadas and it's the middle of winter. Nice to know I'm not actually as crazy as I felt!
mrst53
I am glad I am not nuts. I smell burning rubber. I live in the country, and I figured someone somewhere was burning trash and had thrown on a tire, since the dump charges for tires and no one wants to pay for them. I have never told the doc, because I didn't put it together with the migraine or if I did, figured it was the smoke.
s1ei2c
I feel like the term "hallucinations" may be a weeeeeee bit inflammatory. I have heard of all of these, have all of these and my doc just calls them auras. Isn't that what they've been called for a long time? Yes, hallucinations are technically what they are, but I feel like this is just a new wrapper on an old package.
not found
Certainly for me its olfactory and auditory hallucinations. They can be part of both prodrome(precursor to migraine) and aura (part of migraine). I smell cigarette smoke in the middle of the night sometimes (that has actually awakened me) and I hear what sounds like a murmured conversation on the TV downstairs when its not on. I do have chronic tinnitus and can tell I'm in a cycle if its really screaming, or if I hear Salvation Army bell ringers. And Of course, certain meds do trigger the louder tinnitus. All this was on an extensive list I gave to my new neuro, which I don't think he even bothered to read...
mahtamouse
I used to go crazy looking for this sickening sweet smell of death... I drove my family crazy asking repeatedly if they smelled it too, while looking high and low for the source of this horrid smell. Took me years to finally realize that whenever I smelled this, it meant that I was in for one hellacious nightmarish migraine. I'm now on a preventative RX so thankfully that smell isn't as frequent as it used to be, but at least I now know that if I do get this smell to immediately reach for my pain meds. It's like my early warning system; my canary in the mine.
1. Katie M. Golden Moderator
 Elliegal, I get olfactory hallucinations too. Took me so long to link them to my migraines. Just thought I'd share this article with you. <a href='https://migraine.com/blog/experiencing-smells-taste-prior-to-migraine/' target='_blank' rel='noopener noreferrer nofollow'>https://migraine.com/blog/experiencing-smells-taste-prior-to-migraine/</a> Glad you have meds that are helping! -Katie <a href='http://Migraine.com' target='_blank' rel='noopener noreferrer nofollow'>Migraine.com</a> Moderator
petitemathilde
For hallucinations am I the the only one having visual hallucinations ? I've had those for about a year and I used to freak out quite a bit. it's mostly shadows or fleeting forms moving way too quickly out of my field of vision but when I am in a closed room at home I know it is not real and not really possible. I haven't told my doctor yet, it's been a while since I had these but they started coming back lately. I don't think I can possibly put that in visual aura or disturbance it doesn't feel the same and it goes away within seconds
1. DonnaFA Admin
 Hi petitemathilde! Never fear, you are absolutely not alone. We have multiple articles on the site that speak to hallucinations. I thought you might be interested in <a href="https://migraine.com/?s=hallucinations&submit=Go" target="_blank">browsing through the list. </a> In relation to the specific symptoms you describe, dark shapes and three-dimensional effects, you may especially want to see <a href="https://migraine.com/migraine-aura/visual-aura/" target="_blank">Visual Aura</a>. Please know we're always here to share support or just to listen when you need a friendly ear. -All Best, Donna (Migraine.com team)
alexandriasz
I smelled things burning, like cigarettes or electrical wires, for decades before I found a Dr who knew what was going on. I tasted metal so often, I considered getting all my fillings replaced, thinking it was the filling leeching into my system. I've never heard music, but I've heard "talk radio" just loud enough to annoy me but not so that I can understand what's being said. And I constantly think I hear people talking just outside the bedroom window (we live on 10 acres and have no neighbors). When I first told a Dr about hearing the voices, she kept insisting that they were telling me to do something and she wanted to know what they were telling me to do. I haven't told any Dr about that since. So many do not understand migraine at all.