Light Sensitivity (Photophobia) and Migraine

Said everyone with light sensitivity accompanying/preceding a migraine attack ever. (Too bad we often can’t sleep through the symptoms…sigh.)

Photosensitivity is a term used to describe an abnormal sensitivity to light. For practitioners, photosensitivity is a vexing symptom since the pathophysiology of its cause is not well understood and little is known about appropriate treatment. For the patient who has the symptom, disability may ensue and frustration from lack of understanding of the medical community can be prevalent.

Terminology

The term “photophobia” is somewhat of a misnomer since phobia refers to a fear of light. We use the word to denote patients who have an abnormal sensitivity to light. While all of us have experienced an uncomfortable sensation when we have gone from a darkly lit room or theatre to the bright outdoors, we soon adapt to the sensation and the light is comfortable again. However, in some patients, bright lights—even normal lights—are always experienced as uncomfortable. “Photo-oculodynia” refers to a non-painful light source producing pain in the eye. “Dazzling” is a term used when things appear too bright, but, while everything is bright overall, the light is not bothersome or painful.

Etiology of Photophobia

Many conditions cause photophobia, and the most common condition is migraine. Indeed, photophobia is one of the cardinal features and appears prominently in the International Headache Society’s classification of migraine. Photophobia has been shown to be present during and in between migraine attacks. Furthermore, just having the symptom of photophobia predicts that the individual has underlying migraine (Muelleners et al).

https://americanmigrainefoundation.org/understanding-migraine/photosensitivity-and-the-headache-and-migraine-patient/

For many of us, light sensitivity is a real problem; not only can it accompany or be the first sign of an attack–it can set off an attack. Some chronic migraineurs find that for them, photosensitivity becomes persistent to the point of being a constant (I’m one of them–um…yay? Do I get a prize? Maybe sunglasses…). Some of us end up getting tinted lenses or wearing sunglasses indoors on a regular basis.

For me, being daily chronic and constantly light sensitive, sunlight and fluorescent lighting are my worst enemies (why I don’t tan and rock the Casper look). At worst, they can cause pain to flare horribly. At best, they’re a low key irritant that raises my symptomatic level a notch or two.

I avoid fluorescents if at all possible, but unfortunately grocery shopping is a must (can’t starve myself despite nausea trying, and the others in my house kinda like food). Fluorescent lighting and bad music on the overhead, not to mention loud announcements and sometimes loud customers make grocery shopping my personal hell. I’m always wiped out and feel lousy (or lousier) afterwards.

Nighttime driving with photophobia? HAHAHAHA…not on my agenda unless it’s an emergency, for a few reasons:

1. Headlights.

All I see coming at me–no road, no traffic lines; JUST. HEADLIGHTS. BLINDING. ME.

2. “Does that vehicle have double headlights, or am I seeing double again?”

3. HALOS AROUND ANYTHING REFLECTIVE. HALOS AROUND LIGHTS. AND WHATEVER THAT LOVELY PHENOMENON IS IN THE BOTTOM PICTURE.

Sure, they’re pretty. They’re also a huge distraction while driving. Not entirely certain if this is an aura or a photophobia thing, but yeah. The first time I saw halos around reflective stuff, I said to my son, “Look! Pretty!” And nearly drove into a ditch because I was so distracted.

4. No pic for this one, but:

“Are those colored halogens in my rear view? Or multicolored halos? Or are those police lights?”

(Please tell me I’m not the only who has that happen.)

5. THIS. FEELING. RIGHT HERE.

Yeah, I’ll pass, thanks.

Photophobia, thou art a scourge upon mine eyes!

-Selena

#MigraineAndHeadacheDisorderAwarenessMonth #MHAM #migraine #chronicmigraine #spreadawarenessnotstigma #NotAHeadache #DownTheRabbitHole #photophobia

I Wear My Sunglasses At Night

The only problem with these cheap Walgreens sunglasses is they’re so dark I can’t see well at night or indoors.

Migraine causes us to be hypersensitive to stimuli around us, in the environment, or that we come in contact with, much as asthma does for someone with the condition.

Like asthma, if you don’t have migraine (which is the condition, not the individual attacks), your body is not wired to hyperreact as ours does.
Triggers (stimuli) are NOT the cause of attacks. Migraine disease is the cause.

This is a genetic neurological condition, not a headache at all. Migraine can occur without the symptom of head pain and can still be disabling.

Photophobia (light sensitivity) can occur before an attack, during an attack, and can even be a problem between attacks for many migraineurs. Since I’m daily chronic, it impacts my life in many ways (for some examples of how it affects me, read my blog post Light Sensitivity (Photophobia) and Migraine).

With the month of June being Migraine Awareness month, many organizations are working on ways to increase and spread the awareness of migraine and to try to make migraine more visible. One such group is Shades for Migraine. They have designated June 21 to be Migraine Solidarity Day and are asking for individuals to participate by wearing sunglasses all day! Since this day happens to be my birthday, I am aware that June 21st is the longest day of the year. While the importance of sunglasses may seem strange to some individuals, for those who experience photophobia it is definitely something that hits home. For many of us, sunglasses are a major life necessity for survival.

https://migraine.com/living-migraine/shades-migraine-event-photophobia/

Shades for Migraine is an event to show solidarity with migraineurs and to raise awareness of migraine, and it’s on June 21st. I participate in it many days by default–I’m one of the many with migraine who have abnormal light sensitivity all of the time (“all the time” means just that–it doesn’t go away). I’m almost positive I’ll be participating tomorrow, too.

If you are also participating in Shades for Migraine, head over to my blog’s Facebook page and post some pics of you in your shades!

– Selena

#migraineurproblems #MigraineAndHeadacheDisordersAwarenessMonth #MHAM #migraine #chronicmigraine #spreadawarenessnotstigma #NotAHeadache #DownTheRabbitHole #photophobia #shadesformigraine

Hope at a High Price

And for many of us who can’t afford an $8000+ price tag,
that’s exactly what we’ll continue doing…and doing…and doing…

I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.

This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.

What good is a highly promising medication if those who need it most can’t afford it?

– Selena

"Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation. 

But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say. 

A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur. 

The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size. 

Amgen Inc. AMGN, -1.03%  has already filed for approval, and Eli Lilly & Co. LLY, -0.21%  and Teva Pharmaceuticals Industries Ltd. TEVA, +1.61%  have plans for later this year.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday. 

But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike. 

Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face. 

“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”

Read the full article at New migraine drugs have promise — and a $8,500 price tag.

#MigraineAndHeadacheDisorderAwarenessMonth #chronicmigraine #NotAHeadache #migrainenews #MHAM 

Migraine and The Trigger Trap

Image from migraine.com 

Weather and wine and chocolate, oh MY! Those terrible triggers!

(An important distinction here before we continue: triggers are NOT what "causes" migraine. Migraine is a disease that causes sensitivity to triggers (stimuli). If one does not have migraine disease, triggers don't affect them in this manner.)

Today I came across an interesting post from a friend's Facebook about a study on triggers:

 "Our study results show that people with migraine have great difficulty identifying their personal triggers and their suspicions may be overly influenced by beliefs popularized on the internet. Unfortunately, these misperceptions lead to a lower quality of life by people avoiding many things they love but without good scientific reason,” explains Alec Mian, CEO and founder of Curelator Inc. 

The first study examined trigger suspicions in users with episodic vs. chronic migraine and revealed an unexpected disconnect between suspicions and scientific reality. Both groups suspected virtually the same set of triggers. However, after using Curelator Headache, which scientifically determines true risk factor associations, significant differences in triggers were revealed between episodic vs. chronic participants."

The funny thing about this is that it ISN'T a new idea. I've been talking about how triggers may not actually be triggers since reading a few articles in this vein a few years ago, and how triggers are often cumulative, so the most recent events or substance that pushes an attack into existence may be the one blamed, when in fact it's a progression.

Take, for instance, this article from WebMD and one on a correlating study from TIME magazine, both from 2013:

 "In his clinical practice, he sees many patients whose quality of life suffers as a result of both their migraines and their efforts to avoid triggers that they believe will lead to attacks. In addition to light and exercise, other proposed triggers include stress, emotions, and certain foods. 

But there’s little evidence that any of these things really do trigger attacks, says Goadsby. He hopes that, in addition to the current study, there will be much more research on triggers. 

“There are tens of millions of people with migraine,” says Goadsby, “and all they have to go on are tales handed down about what triggers them.”
(WebMD) 

"You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks. “What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”  

Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”  

Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine."
(TIME) 

The TIME article prompted me to test some of the things I'd previously thought were my triggers, one of which was pepperoni pizza--one of my all time favorite foods and something that is high on the list of things thought to contain classic triggers (aged cheeses and aged, dried, fermented, or smoked meats).
Guess what I found? It did NOT always set off an attack. The times it seemed to were usually times I was already in danger of one, pointing to the cumulative factor, or that it wasn't one.

Now, triggers CAN change over time; as my attacks progressed to chronic, so did the things that could set them off. But many of those were environmental or cumulative. Some were unavoidable, like weather--scientists don't know why weather/barometric pressure are likely to set off attacks for so many of us, but it has shown that it does. Others were fragrances like perfumes or cleaning products (bleach is the number one).

When I became daily chronic, triggers more or less went out the window. Nothing actually set off an attack as mine was 24/7, 365, but some things could certainly worsen my pain/symptomatic level. Weather is still the most reliable one, but fluorescent lighting is up there, along with odors and certain chemicals. Too much exercise can exacerbate it, but carefully paced exercise or exertion may or may not. I seem to have a stunning zero food or drink triggers...and I suspect some of us may have less of them than we think.

One of my friends is entirely triggered by environmental allergies ; she's literally allergic to the environment.
I know allergens in the environment affect mine adversely.

The takeaway here: triggers may not be what we've thought they were, either in what we think they are or in their influence on migraine. This may not change how you see them, but it's worth following.