Lyme disease can result in sensory overloading, causing patients to develop a sensitivity to both light and sound.
A few years ago, some new friends invited me for a night out at what I thought was going to be a quiet restaurant. When I got to the establishment, though, I discovered it was a club with strobe lights and loud music. Wanting to be polite, I sat down at a table with the group and tried to make conversation. I lasted about five minutes before I needed to excuse myself.
Before I got sick with the tick-borne illnesses Lyme disease, babesiosis, ehrlichiosis, and possible bartonella, I enjoyed nights out at clubs. I danced the night away to loud music. I never even noticed lighting. Now, the neurological effects of my illnesses cause sensory overload, with particular sensitivity to light and sound. Bright flashing lights, fast-moving images on a screen, or even fluorescent lighting in a store can make me want to turn away and close my eyes. Loud noises ranging from music to an action-packed movie make me quickly cover my ears or turn down the volume.
Doctors Explain the Science Behind These Lyme Symptoms
As Brian A. Fallon, MD and Jennifer Sotsky, MD explain in their book Conquering Lyme Disease: Science Bridges the Great Divide, “Lyme disease can affect the sensorium early and severely, and such effects, in some cases, persist beyond recovery from other symptoms.”[i] The disease can affect the sensorium via the infection itself and systemic immune effects, changes in neurotransmitter balance, and altered neural pathways, all impacting sensory processing. For some patients, this might mean sensitivity to extreme lights or sounds that can cause a flare of other neurological symptoms. Just a few minutes of overload can bring on a sense of my head feeling “full,” brain fog, or twitching and burning extremities. Drs. Fallon and Sotsky note, “Exposure to light may lead to headaches, eye pain, or even panic attacks. It can be very helpful to recognize that the feeling of extreme anxiety in certain settings is related to sensory issues rather than coming out of the blue or in reaction to interpersonal tension.”
For other patients, the sensitivity may come from more subtle light or sound exposure, things that other people might not notice but that can send the Lyme patient’s nervous system into overdrive. I know one patient who felt like she was listening to loud music if someone merely whispered on the other side of the room. Repetitive noises, like a ticking clock, can be especially grating. “Most of us take for granted that our senses provide us with a more or less accurate representation of the external world,” write Drs. Fallon and Sotsky. “But when colors appear suddenly too intensely bright, or normal ambient sounds, rather than being soothing, grate against us like a rasp on metal or fingernails on a blackboard, then there is a brutal awakening to the fact that we are, in our very essential being, at the mercy of our sensory apparatus.”
What Lyme Patients Can Do to Control These Symptoms
Because sensory overload may or may not improve with treatment as other symptoms do, patients need to learn to control external factors that can set this symptom off. For example, I have realized that I can handle watching a movie in the theater as long as I don’t sit too close to the screen, and as long I as wait in the lobby during previews, which tend to be particularly loud and flashy. I’ve gotten rid of ticking clocks from my home. I’ve turned off the “zoom” feature on my phone, so it doesn’t look like the apps are flying at me when I open the screen.
Making these lifestyle adjustments can be frustrating, especially if you’re someone who previously enjoyed big shows and now cannot. For me, the modifications are worth it to avoid neurological symptom flares. And while my sensory overload has not gone away, it has improved over time. When I was acutely ill, I couldn’t even watch a movie on a small screen at home. Loud voices were too much for me. My tolerance has improved, and now I can handle acoustic concerts and stores with fluorescent lights. And I don’t need a club scene to enjoy a night out with friends. I just need their company, which is more fun anyway when I don’t have to shout over loud music to talk to them!
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The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.
[i] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (315).
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.