We all can measure our quality of life, but have you considered where your “visual quality of life” falls on the scale?
Dr. Kathleen Digre, a distinguished neuro-ophthalmologist and former president of both the American Headache Society and the North American Neuro-ophthalmology Society, provided more insight on this.
Those who experience a symptom such as photophobia likely can. “Having severe photophobia … really can affect the visual quality of life,” Digre said.
A study of 106 individuals with varying headache disorders was conducted to analyze the burden of migraine, including the impact on visual quality of life. The results “indicate[d] that visual quality of life is significantly impacted by migraine,” particularly “greater for patients with chronic migraine.”*
Previous similar studies have also included individuals who suffer from common neuro-ophthalmic disorders (some which include thyroid eye disease, idiopathic intracranial hypertension, optic neuritis, myasthenia gravis, and cranial conditions).*
“The chronic migraine visual quality of life was as bad as diseases like optic neuritis with Multiple Sclerosis,” Digre said.
“Migraine has many associated visual symptoms such as aura, photophobia and visual blur. Most migraine patients are photophobic during an acute attack.”*
This is very debilitating and deserves much more understanding by the general public.
Across the board (in clinic / research) it has been concluded that “Individuals who have photophobia as their main complaint… many of these also have migraine… their visual quality of life is even worse than those with chronic migraine,” Digre said.
Photophobia is not to be taken lightly. It is disabling. It requires adjustments in the person’s daily life. It isn’t something that can be turned on or off. And without doubt, it is a symptom many wish they did not experience.
Digre expanded, “This is a symptom that is worthy of more study and understanding because I think it’s been severely overlooked.”
The reality is that sufferers of photophobia find it can be easy (and much more comfortable) to seek out and live in darkness.
“Retreating into darkness … is really counterproductive,” she said, providing a very relatable analogy. “Think of yourself going to a matinee and then coming out into the light. Even a person who does not have light sensitivity, comes out and squints a little bit, and you’re under a little bit of discomfort.”
Now, “imagine that is your discomfort all the time – that’s what [photophobia sufferers] are sensing,” she continued.
This really puts it in perspective.
“Chronic darkness will increase the perception and pain of light sensitivity.”**
To further clarify that, “If you stay in the dark all the time, even normal light is going to seem really bad. You have to come into the light.” This circles directly back to getting evaluated by the proper doctor and receiving the right diagnosis.
“About 21% of the patients with photophobia were disabled; disabled meaning not working,” Digre said.
Digre’s passion and dedication to clinical research on disorders in women is remarkable.
When asked what she finds to be the most under-represented condition in women (in addition to photophobia), she said, “About 80 to 90% of all of our idiopathic intercranial hypertension individuals [are women]. This is a condition of Papilledema – headache in obese young women of child-bearing age, [with] raised intracranial pressure.”
The NIH defines Papilledema as “a condition in which increased pressure in or around the brain (intracranial pressure) causes swelling of the part of the optic nerve inside the eye (optic disc). Symptoms of increased intracranial pressure include headache or nausea and vomiting.”***
She also finds that chronic migraine, dry eye, overlapping fibromyalgia and other types of chronic pain conditions need more awareness brought to them.
Through community awareness and clinical efforts by experts like Digre, we can look forward to promising strides in the future.
Dr. Kathleen Digre is distinguished in the field of neurology and neuro-ophthalmology at the Moran Eye Center. She serves as Chief, Division of Headache and Neuro-Ophthalmology at University of Utah and previously held the position of President of the American Headache Society and the North-American Neuro-ophthalmology Society. She is listed in Best Doctors of America.
*Hanson, L. L., Ahmed, Z., Katz, B. J., Warner, J. E., Crum, A. V., Zhang, Y., … & Digre, K. B. (2018). Patients with migraine have substantial reductions in measures of visual quality of life. Headache: The Journal of Head and Face Pain, 58(7), 1007-1013.
**Digre, K. B., & Brennan, K. C. (2012). Shedding light on photophobia. Journal of neuro-ophthalmology: the official journal of the North American Neuro-Ophthalmology Society, 32(1), 68–81. https://doi.org/10.1097/WNO.0b013e3182474548
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