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 Can Be Deadly. (Yes, Really.)

On the last day of Mental Health Awareness Month, I'd like to highlight the importance of mental health in conjunction with chronic pain/ illness/migraine.

I can say that having found the migraine community shortly after this young woman's death, I was profoundly and deeply affected by Melissa's story.
Having progressed to daily chronic myself a relatively short time before, I was struggling to deal with the pain, the stigma, and still searching for answers that at the time didn't exist or weren't widely known.

I approached the 3 year mark of my daily chronic migraine existence with trepidation because of Melissa's story, wondering what might be the day I gave up hope...and although I passed it with some relief that I hadn't harmed myself, I WAS haunted by the "It could have been me" thoughts, as I did have frequent thoughts of suicide and even a plan on a few occasions.

I'm glad to say I got help for the crushing depression I felt then; although it's by no means a cure, it does help me cope exponentially better.

Many of us are still lost there, though.

During a livestream Q&A I did on Chronic Illness on The Mighty, I touched on the story of Melissa's loss and how it affected me although I'd never had the chance to know her, and included her in my reasons that I feel so strongly about stressing the importance and relation to mental health and chronic pain/illness.

She still is a large reason that I do this.
My others are the my own experiences, my family, and the countless others who are in the trenches fighting this battle at any given time.

Yes, migraine can kill. It kills through depression, though loss of hope, and through suicide.
Yet it still isn't seen as the monstrous disease that it is.

I want to help change that. For Melissa and for every one of us.

- Selena

"The migraine community is deeply shaken by this young woman’s suicide. Those who knew her are crushed by the loss of a vibrant, warm-hearted, loving person who was only 22. And I believe that those who didn’t are haunted by the niggling thought, “It could have been me.” Even the chronic migraineurs who haven’t seriously considered suicide know the feeling of not wanting to live like this anymore. It is not that we want to die, but that the daily struggle of chronic migraine feels like it is too much to bear and the light at the end of the tunnel often seems nonexistent."
(Quote from The Daily Headache)

Photo from BrainWreck Rebels Melissa Dryer Foundation

Looking Ahead to June: Migraine and Headache Disorder Awareness Month

#june #MigraineAndHeadacheDisordersAwarenessMonth

We're coming up on one of my favorite months- Migraine and Headache Disorder Awareness Month!
I'll be sharing LOTS of awareness info intended to reach migraineurs and non migraineurs both, as well as awareness about other headache disorders.

Naturally since chronic migraine is my personal monster, I'll focus on it, but if you have a headache disorder you'd like featured here or on my Facebook page, please let me know! I don't want to leave anyone out--I know too well how that feels.

Also, a great all-inclusive page to follow (this month and all the time) is BrainWreck Rebels - they are excellent support and information for anyone with any type of headache disorder.

The Migraine Warrior and Migraineur Mutterings and Musings are excellent migraine pages as well. I'll be featuring some of my favorites throughout the month of June, so stay tuned!

The Love/Hate Relationship I Have With Medications for my Illnesses

I truly wish more people understood this about chronic illness:

We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Big difference. 

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.

And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.

I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.

And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time.

And I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.

Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.

Not "JUST" a Headache is an Inadequate Description of Migraine

I know this may be an unpopular post for many migraineurs, but I've got to say it:

I don't like the "not just a headache" thing. In fact, it drives me nuts. Why?

Because it's incorrect, and it still basically says that "migraine = headache plus some other things."

Migraine is not a "headache + some other things."

Migraine = NOT a headache at all.

Migraine = complicated neurological genetic disorder with a plethora of possible symptoms...one of which MAY or may not be pain. 

 

Not all migraineurs have head pain as a symptom.

Some migraineurs have abdominal pain instead of head pain. 

And no matter where you fall on the symptomatic spectrum, migraine attacks can be disabling, with or without pain. 

I really have to wonder how much we ourselves add to misconceptions and stigma by embracing the "not JUST a headache" movement. Why of all things did this become our rallying cry? Was this how we thought it would be more relatable to non migraineurs? 

Because if so, I think it's pretty much proven otherwise.

And worse, not only does it not make it easier for others to relate, it excludes many migraineurs and contributes to lack of knowledge and misconceptions, even within the migraine community.

Why are we using a phrase that limits migraine to a "headache + some other things" when we already feel we're not taken seriously as having a real illness?

Mental Health Awareness Month: Spotlight on BPD (Borderline Personality Disorder)

IN MY LAST POST, I EXPLAINED THAT MENTAL HEALTH AWARENESS MONTH IS IMPORTANT TO ME. 

THIS POST HIGHLIGHTS ONE OF THE REASONS WHY.

***WARNING: IF YOU HAVE ATTEMPTED SUICIDE OR ARE A SUICIDE ATTEMPT SURVIVOR THE FOLLOWING POST MAY BE TRIGGERING***

Originally published on The Mighty, April 19, 2017

Today, I read a post that made me think about how the stigma of borderline personality disorder (BPD) can lead to its diagnosis becoming a self-fulfilling prophecy. This quote in particular really hit home:

“Talking semantics may seem oversensitive, but the rhetoric surrounding BPD has got to change. Stop painting us as delirious, insane, selfish, dramatic, manipulative, etc. We’re battling a cruel, ugly monster that most people won’t understand, and we need help just as much as anyone else living with mental illness.”

BPD is all too commonly seen as a hopeless diagnosis, even by many mental health professionals. For most of my daughter’s teen years, she was in and out of psychiatric hospitals, attempted suicide several times and self-harmed. She was in the juvenile justice system and abused drugs. She was diagnosed with bipolar disorder, but I was positive this was not what she had. My son has bipolar disorder, and while I’m fully aware it doesn’t present the same for everyone, the diagnosis didn’t seem to fit her symptoms.

I had started doing my own research into mental disorders when my son was diagnosed a few years before, and something I read was niggling at my brain. I looked up borderline personality disorder. The description fit her perfectly. Every trait was dead on.

My daughter and me (2016)

Her doctors refused to entertain the thought that it might be BPD. What did I know? I was only her mother, and they were licensed mental health professionals. I was met with condescension for the most part until she was 15, when a suicide attempt landed her in the hospital yet again and the doctor treating her had more concern for her welfare. He agreed that her behaviors and thought patterns absolutely fit the description of borderline personality disorder and suggested we find a therapist certified in cognitive behavioral therapy (CBT).

Still, we almost exclusively heard medication and therapy were “not likely to be terribly effective, so we hate to saddle someone with that diagnosis.” Her official diagnosis remained bipolar disorder, but it was added that she had borderline traits in the interest of getting help geared toward her needs.

But what we discovered repeatedly was that instead of her needs being met, the misconceptions and stigma of BPD often meant she was written off as a “hopeless case” by many. Some therapists and psychiatrists still hold this view, and their clients suffer for it, even to the extent of being given up on or not accepted as patients.

We had one nurse tell us to hang in there, that she had BPD but was finally doing better. The therapist we found was encouraging and wonderful. Only two people amid a sea of professionals were hopeful.

Why is BPD so stigmatized?

Some of the most widely known traits of BPD are often seen as character faults a person could “just change if they really wanted to.” Traits such as attention seeking, intense emotional reactions and manipulative behaviors. In a teenager, they’re often blown off as being “dramatic” or “acting out.”

It’s not that simple. BPD is a disorder, not a state of mind. Treatment can help a person mitigate and manage those traits, but one cannot just “decide not to be that way.”

I’ve frequently seen it said that treatment doesn’t help because those with BPD often don’t seek it or think they don’t need it. This idea is misleading because a number of people with other mental illnesses also don’t seek treatment, think they’re OK or think they don’t need it. Yet BPD is the disorder most commonly associated with this belief. BPD is too often treated as the “redheaded stepchild” of mental disorders, even among others who have mental health disorders.

(We do a lot of SELFIES in this family. I'm sure you can't tell, right?)

With these and other misconceptions about BPD, is it any wonder many give up hope or lack support?

The amount of negative information or misinformation about BPD and the lack of positive information on the internet is appalling, which inspired my now-adult daughter to write an encouraging article about parenting with BPD which was published on The Mighty.

BPD is not a hopeless diagnosis. My daughter may still have room for improvement (don’t we all?), but over the past five years, she’s made amazing strides. She stopped using drugs and has been sober for five years, she’s back in therapy, she’s maintaining well and she is a wonderful mother to my “grandspawn.” She’s reached out to encourage others with BPD via the article she published. I’m incredibly proud of her and all of she’s done and is doing for herself and her son.

BPD is not a hopeless diagnosis. The right therapy for an individual, a good doctor, perhaps medication for associated illnesses like depression, anxiety and a strong support network — these can make an invaluable difference for a person struggling with BPD.

And aren’t our loved ones and ourselves invaluable enough to deserve those things?

My daughter is living proof that BPD isn’t a hopeless diagnosis, as are many others. But a great many need hope. Let’s help spread that hope for them instead of stigma.

Mental Health Matters As Much As "Physical" Health

May is another favorite advocacy month for me: Mental Health Awareness Month.

If you've read any of my previous blog posts, you'll know that mental health is an important subject for me, both in conjunction with chronic illness and on its own.
If you think I stress mental health awareness as it is, buckle up, because I'm going to really focus on it this month.

Mental illness has impacted my life in many areas; both of my birth kids have mental disorders, my 2 adopted kids have both had some issues with depression and trauma, I have depression and anxiety, and I have friends who live with mental illness as well. Currently, the hashtag #1in4 is trending, because 1 in 4 people have mental health issues. Chances are that if you are not the 1 in 4, you know someone who is.

Although we have evolved into a society that is more accepting of mental illness, stigma is alive and well, even within the mental health community. We have more awareness and openness about depression, anxiety, and bipolar disorder, but many other mental illnesses continue to be bypassed or misunderstood.

This month I'll be focusing on the mental health issues that have affected my life.

Happy Mental Health Awareness Month and spread awareness, not stigma!

Turning Pain Into Poetry

I love April.

April is not only my birthday month, it's National Poetry Month here in the US.

I've loved and written poetry for as long as I can remember. To me, it's as necessary as the air I breathe. So it was natural for me to incorporate my illnesses into my writing when I started progressing from episodic migraine to daily chronic, when depression had the upper hand, when traumatic memories came knocking, and when life in general dealt out lemons.

It's also my self therapy (I despise journaling personally) and a part of how I reach out to others...nothing says "me too" like reading your own thoughts, struggles, pain, loves, or triumphs in blazing emotion from another person.

And there's nothing like that "I'm not the only one" moment. I know because I've been there--from being an abuse and domestic violence victim to motherhood to depression to chronic illness to life in general to beautiful moments.

Turning pain into poetry...into a blog post...into art...into outreach...into advocacy...into connection with others.
I have never subscribed to the belief that our struggles are given to us as part of a mysterious greater plan/purpose or to better us, because I don't believe God is that cruel ("Oh, let's take her niece, because then she'll write an article about grief that helps others"...seriously? That's not the God I follow), but I DO strongly believe that we can turn anything into an opportunity to help others.
In doing so, we give it our own purpose.

This National Poetry Month, I'm celebrating that purpose.

Mourning the Loss of an Advocate: Amy Bleuel

****WARNING--THIS POST MAY BE TRIGGERING IF YOU HAVE SELF HARMED, CURRENTLY SELF HARM, OR ARE A SUICIDE ATTEMPT SURVIVOR.**** 

My heart has been heavy the past few days since the report of mental health advocate Amy Bleuel's death was released.

For those who don't know who Amy was, she pioneered a network of peer support via her non-profit organization, Project Semicolon, founded in 2013. Project Semicolon exploded into social media consciousness in 2015 when pictures of semicolon tattoos inspired by the Project took off and started spreading like wildfire, but I was a follower of the Project since 2014 when I came across a photo on Facebook dedicated to Semicolon Day:

(The above photo is from 2015, but the one I came across was the same or similar.)

Project Semicolon defines itself as "dedicated to presenting hope and love for those who are struggling with mental illness, suicide, addiction and self-injury", and "exists to encourage, love and inspire."^[8] While they are devoted to achieving lower suicide rates in the U.S. and worldwide, they do not themselves practice psychiatry, and the staff are not trained mental health professionals.^[4] Rather, they recommend contacting emergency hotlines (e.g. 9-1-1 or the National Suicide Prevention Lifeline) or seeking mental health professionals.^[9]

According to a report by the Centers for Disease Control and Prevention, suicide is the 10th leading cause of death in the United States. with 42,773 reported deaths in 2014.^{[10] (from Wikipedia)}

I can't stress enough how important the Project was to me as someone who has a past history of self harm, who has struggled with depression and anxiety, and as a suicide attempt survivor and the mother of a suicide attempt survivor.
Amy made it okay to talk about these things more openly for so many and touched so many lives with a small punctuation mark. By nature, those who self harm tend to hide what they do. There are differing reasons and methods of self harm that I won't go into here, but the nature of the stigma has prevented many from seeking help or having hope for recovery. Suicide attempts often have similar stigmas attached, and many survivors, suicide loss survivors, or those considering suicide tend to feel alone even in the mental health community. Amy gave us a place there.

As an advocate for mental health as well as chronic illness, I admired and continue to admire Amy and her message of inclusion and support.

Amy was a suicide attempt survivor who struggled with depression and trauma PTSD herself, and whose father died by suicide. As many know, survived suicide attempts increase the risk of death by suicide in an individual. Yesterday, it was indeed confirmed that Amy died by suicide.

People tend to think mental health advocates have the answers and have conquered, but we're really still in the battle with them.

We're navigating the same waters, but don't necessarily have a lighthouse in sight, a life jacket, or even know how to swim in uncharted waters...we just know we're called to help others.
Sometimes in helping others, our own self care takes a backseat; sometimes because it's easier to focus others' problems, sometimes because we get caught up in what we do, and other times because we just don't see that we have that same safety net we try to be.

When an advocate dies by suicide, people wonder what will happen to those they reached out to.
Will they feel "cheated" or abandoned?
Will they lose hope and give up?

Such a loss does not invalidate the message or their work. It makes it more important.

Rest in peace, Amy Bleuel. Your story is still not over, and neither is your legacy.

~ Selena Marie Wilson ~