Life with Chronic Migraines


The year is 2011, but I’m in too much pain to remember that at the moment. I’ve forgotten a lot of things- my own name, the name of my cat, what town I lived in, and who the president is. All I can sense is levels of pain that I have never felt in my life before, and I wish they would stop. My parents thought I was having a stroke, the local hospital thought it was a drug overdose. It wouldn’t be until three days later at the children’s hospital that I would get pain relief and the diagnosis of chronic migraines, something no one else in my family had.

Chronic migraines are defined as “more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use (International Headache Society).” Migraines commonly run in families, and can coexist with other neurological conditions as well. Another name for chronic migraines can be chronic daily headache. Since 2011, I have had more than 15 headache days a month, sometimes reaching up to 30 headache days, where I have a debilitating migraine every day, a symptom connected to my diagnosis of Chiari Malformation.

For me, my migraines are drug resistant, though my neurologists over the years have had me try several different medications with awful side effects. Topamax made me never hungry, Verapamil made me dizzy, Amytryptiline and Imitrex gave me allergic reactions, and Neurotin gave me worse side effects than I ever could have imagined. I was missing school to go sit in the nurse’s office or missing band performances because the flash photography was similar in frequency to a strobe light, my biggest trigger. I had to navigate freshman year of high school while on large amounts of migraine drugs with weird side effects, yet still having chronic pain. I wish that experience on no one.

I started to manage my symptoms with massage therapy and acupuncture, and found that helped a lot with managing my migraines. It didn’t lessen their frequency, but because there was less pain in my neck and shoulders, the pain seemed more tolerable. I also start finding simple remedies that help me manage my symptoms, like peppermint essential oil to combat nausea or doing yoga to release muscle tension. Using alternative medicine has helped me a lot, though I understand that it isn’t meant to cure my migraines.

My senior year of high school, I was in almost all virtual classes for several reasons, one of which was my chronic migraines. I would sleep through my first period class, come to school for second and third period, and often leave during fourth period. Alternatively, I would stay through fourth period and then go home and crash in bed. Sleep was really the only way I could manage my migraines, which could be triggered by flashing lights, loud noises, the weather, or seemingly nothing at all. Food triggers were ruled out as the cause of my migraines, as well as vitamin deficiencies and similar conditions. My migraines were confirmed to be caused by Chiari Malformation in October 2015.

Fortunately, I have been able to attend college several hours from home and continue to manage my migraine condition. I have a private bedroom, meaning I do not have a roommate, but do have 1-3 suitemates who I share a bathroom and living area with. My disability housing accommodations state that I should have a lower-level private room with air conditioning, and the ability to make my room completely dark, as I am sensitive to light and sound when I have migraines. I also have a file with Office of Disability Services that says I have migraines. I schedule my college classes at times where I usually don’t get migraines and often come home from class and sleep (read more about my bed here). I have also gone to class with migraines before, as I know the migraine won’t improve whether I’m sitting in my room or sitting in the classroom.

Often times, people can’t believe that I am able to function through my migraines so well, and ask how I am able to live through this pain. The truth is, I have two options- let everything consume me and just sit in my room all day, or get used to the pain and live my life. While that first option may be beneficial for some people (and I understand pain is relative), I have chosen the second option of developing a superhuman pain tolerance and just living life. I do not like talking much about my condition in real life, because I do not want sympathy or attention from others, especially people I barely know, as I can manage my pain just fine. My close friends and family know the depth of my condition, and that’s more than enough.

I can’t say that life with chronic migraines is the best thing ever, but I can say it has made me a more understanding person. Whenever someone around me experiences migraines, I can relate on a deep level to the pain, sensitivity to the world, and feeling like hair weighs 100 pounds. I understand there are people who have it worse than me, but my hope is that my experiences with chronic migraines can help someone else understand their condition more.

Too High-Functioning


The teacher is passing out the classwork for the day, and there is a noticeable lack of large print or colored paper at the bottom of the pile. As it comes time to give classwork to my section, the teacher looks at me and goes “Oh shoot, I forgot you needed large print. Figure something out.” My best friend next to marks another tally on a list we call “times Veronica didn’t get her work”- in one class, we have over two dozen tallies.  I often leave the classroom to go enlarge my assignment, since I know that if I don’t, the teacher will give me a zero and remind me of how they wished I wasn’t in their class. Even though I have an IEP, and have had one since kindergarden for my low vision, that doesn’t seem to stop teachers from continuing to discriminate against me. I report this to my case manager or other staff member in the special education department, and they pretty much say the same thing each time:

“You’re so high functioning, it’s easy to forget about you!”

My parents and I are in an IEP meeting because I currently have a C, or a D, or a F in one of my classes. The teacher has repeatedly forgotten or refused to enlarge my work, saying it is a waste of resources. I have As in almost all of my other classes, Bs in a few of them. My parents are trying to figure out how an A student is getting such low grades, and why nothing is being done about it. But, by technicality, Cs and Ds are passing, and the special education department says that everything is fine, after all:

“You’re so high functioning, we have other students to take care of!”

I need some additional resources in the classroom. I try to bring this up with special education staff both at my school and at the district level. Most of my requests are ignored, because I shouldn’t need the help. When people do appear from the district level, they are asking me questions about other students, or strictly talking about other students, saying that I am an easy case, they don’t have to worry about me, there are worse-off kids that deserve their time, and I am wasting their time. I realize that the only way I will succeed is if I figure it out myself, since they always tell me:

“You’re so high functioning, you don’t need our help!”

I’m a college student who is studying assistive technology and am waiting for a friend after a band performance. I’m holding my instrument, wearing sunglasses that block out the glare of the lights, and balancing my blindness cane in the other hand. While I’m waiting, a person I have never met walks up to me and starts asking a series of rude questions about my vision and how they had never met someone like me before. They do not stop talking to me, and get frustrated with me that I don’t respond. Later on, I am told to apologize and answer their questions, and their response is almost exactly what I expected:

“You’re so high functioning, that’s inspirational!”

My typical response to people calling me high functioning used to be saying “thank you, and so are you.” However, recently my attitude changed about this, and I realized that I could replace the negative phrase with a more positive one. Despite the best efforts of school personnel, I have been able to see past the negative circumstances given to me and still succeed in school. I have discovered my passion for assistive technology and helping others to succeed. My condition is a major factor in my life, yes, but it isn’t the only thing in my life. I am not just high functioning:

“I am high achieving.”


How Do People With Low Vision…Go To Prom?

It seems like every year, a news story circulates about how a student with a disability and a student without a disability go to prom together.  It’s usually touted as something inspirational and kind, since the students with disabilities are perceived as not having many friends or being the outcasts of the school, and the student without a disability is considered a completely awesome person just because they are spending time with the other student.  I was talking about this phenomenon with a friend who jokingly asked if my prom date made the news for going to prom with the only girl with low vision in our school.  Thankfully, we were just treated like every other couple at prom, and had a blast.  Here are some tips that can help ensure everyone has a good time, without winding up as the center of attention for having a disability.

Make sure you can easily move around in your clothing choice

This applies more for the ladies, but make sure that it is easy to move around and walk without falling in whatever clothes that you pick.  At the two dances I attended in high school, many of the girls would take off their shoes the moment they got to the dance floor, but would often trip over their long dresses.  I chose to wear flats the entire evening so I had traction and reduced my risk of falling- as my date put it, I trip over enough flat surfaces as it is, so there is no need to put me in high heels.  If you use a blindness cane, make sure it can’t be caught in your dress or shoes either.

Taking pictures before the dance

Before the dance, the parents in our group took photos of all of us.  If it is an issue, make sure to notify them that you are sensitive to flashing lights so that they know to turn the flash off.  Also make sure that there are no obstacles in the picture that could pose an issue- for example, falling down a flight of stairs or into an open body of water.  Also, make sure the photographer tells you where the camera is located so you aren’t staring into space.

Have your date familiarize themselves with being a human guide

While I didn’t use a blindness cane in high school, I had a habit of frequently running into walls, people, objects, and generally missing visual cues.  Luckily, my prom date was my best friend who had gotten used to guiding me to all of my classes and alerting me to obstacles.  It never hurts to remind your date that you have trouble seeing and may need additional help navigating at prom.  Check out my post on how to be a human guide here.

Figure out the layout of the dance floor

At the beginning of the dance, my date described to me the location of the stairs leading to the dance floor, where we were sitting, the entrance/exit, and where poles were located.  While I never was further away than arm’s reach from them, this was still very helpful information to remember in the event we got separated.

Request that photographer avoid your area

If bright, flashing lights in your face are a concern, talk to school administration and the photographer prior to the dance, and remind them again at the dance, to avoid taking photos of you or pointing the camera directly in your face.  With the way that the dance floor was laid out, it was easy to avoid the flashing lights that were used, and the photographer was more than happy to accommodate our request.

If possible, ask for the event to not use blue and red flashing lights

This wasn’t a problem at my school, but a prom that another friend attended had pulsing red and blue lights that they described as seizure inducing- they had to sit out for a few minutes because of the lights, and they’re not even migraine or seizure prone.  This is another good thing to talk about with school administration, as many students can get migraines or seizures triggered by these lights.

Have a place to hide out

There was a period of time at prom where a lot of unfamiliar, loud music and dancing was taking place, and my prom group and I decided to go hide out in the lobby of the hotel we were at.  This helped prevent sensory overload and also gave us a break from dancing- since I couldn’t navigate to the tables near the dance floor easily, it was much easier for everyone to meet in the lobby.

Handling rude comments

I had a few people crack jokes about my date going to prom with someone who was visually impaired, and a few others asking me if I could even see what was going on.  My best advice for this is to ignore the weird comments, or just laugh them off.  It is not worth getting into an argument over.

Don’t be afraid to have fun!

Before the dance, I was very nervous about what to expect and was worried that something would go wrong.  Luckily, my date was a totally awesome person, and my prom group was filled with awesome people as well.  Prom is about spending time with your high school friends before you all graduate, and it’s a wonderful way to make memories.

I hope your prom is lots of fun!

 

Answering Stranger’s Questions- College Edition

As college decision day approaches, prospective students and their families have been touring my college, trying to decide what school will be the best fit for them. Often times, college is the first time people are exposed to a large, diverse population, and it can seem overwhelming. Naturally, people are inquisitive and like to ask questions, sometimes not thinking about how to phrase them.

Because of all of the visitors on campus, I have been using my blindness cane more often for identification purposes, so I am less likely to be hit by a car. With low vision, it can be difficult to navigate campus when there are so many visitors driving around. As I have been walking on campus, I have had many families approach me or loudly talk about me using a blindness cane, sometimes in a very rude way. It can be difficult to answer these questions, especially when they have negative or offensive tones, but education is one of the best ways to combat ignorance. Here are some of the questions I have been asked over the last two weeks by visitors, and how I answered them. I have been requested to add a trigger warning for what may be considered ableist slurs/language and offensive terms.

Whoah! Are you totally blind?

No, I have low vision and poor peripheral vision, meaning I have trouble seeing what’s around me. I use my blindness cane to help me analyze my environment and as a cue to other people that I can’t see very well.

Can you see me?

For some reason, I often hear this when people are standing right in front of me.  I usually respond with “sort of” or “yes.”  If it is someone who is convinced I can’t see anything, I usually find some feature that I can mention to them, for example a blue shirt or green backpack.

Look kids, a blind girl!

I was walking with a friend when someone yelled that in our direction. We didn’t want to yell back that I had some vision, because that would waste time. Instead, my friend yelled back”check it out, a sighted person!”

What’s with the sunglasses inside?

I wear tinted glasses to help with light sensitivity and glare. No, they aren’t transition lenses, they always are this color. And yes, I guess I do wear sunglasses at night, like the song.

What’s your major?  Oh, that’s not a real major

I’m studying assistive technology and software engineering, which is a fairly uncommon major but there are many different careers available, so I will not have an issue finding a job after graduation.  I have learned to give an example of what I will do after college, so when I say my major, I add that I am “studying to create tools for people with disabilities.”  Often times, people then think my major is really cool!

How come she can see but uses a cane?

Another friend was asked this by an employee while we were at a restaurant. My friend explained I have some sight, but still rely on the cane frequently. A different friend responded by saying “she runs into less walls this way” or “it’s easier to figure out where she is based on the taps of the cane.”

You’re too pretty to be blind!

While I’m not blind, I have low vision, my favorite response to this statement is “apparently not!”

You’re too young to not be able to see!

See above- apparently not!

Why do you disableds think you can just parade around campus?

This was said to me earlier this afternoon, and I just wanted to shove my post “You Belong” in their face. People with disabilities fought very hard to be able to attend college, and we deserve to be here, just like everyone else.

I didn’t know blind people could go to college!

I’ve answered this a couple of ways. For people that seem pleasantly surprised, I say that there are laws that make this possible, and I am grateful for the opportunity. When someone seems surprised in general, I just say “here I am!” And when someone seems greatly upset that someone with low vision can attend college, I just smile and move as quickly as I can from the situation.

You’re taking education away from someone who can see!

I got into this college not because of what I have, but who I am as a student. It had nothing to do with my low vision- my essay to admissions wasn’t even about my eyesight, it was about volunteer work. I’m not here because I can’t see.

Hey, can you give us directions to…oh nevermind

I’ve had several people approach me for directions, look at the cane, and quickly try to move away. I actually know this campus extremely well, and would be happy to help you find your way to wherever you need to go!

How bad is your eyesight?

I used to explain a lot more, but now I just say “it could be worse, but it’s still not great.” This question doesn’t really bother me, as often it is how people start conversation when they first meet someone with low vision, but it still can be an interesting question to answer.

I hope these answers help you when dealing with questions of strangers. Feel free to add more questions/answers in the comments below!

Having an Undiagnosed Chronic Illness in High School

Back in high school, people often asked me why my vision was so bad, why I had frequent migraines, why I wore a leg brace several days a week, and how I simultaneously looked completely normal.  It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself.  Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.

Isn’t there medicine/glasses that can fix this?

WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again.  Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have.  I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about.  Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is.  Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.

You’re faking for attention

Ah yes, I must be faking my condition.  I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage.  I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird.  I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick.  And most of all, I love  not being able to do my classwork because I can’t see it, and having the teacher give me a zero!  All sarcasm here, but people say that a condition is fake when it is something they don’t understand.  What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.

I wish I had your condition, haha!

I wish I didn’t have this, but hey, things happen.  There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights.  Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal.  I just laugh off the comment and drop the subject.

What do you even have?

If you can answer this question, then you would be a totally awesome person.  My condition baffled doctors for many years.  When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions.  About a year later, he looked at us and said “time to find that zebra!”  I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn.  Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had.  Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with.  I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition.

If I were you, I would be in bed

Well, I would love to be, here I am at school regardless.  Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done.  I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me.  While pain definitely is relative, I have learned to function through it and be able to continue living.

Why can’t you do this anymore?

As my vision has gotten worse, my need for accessible materials has grown exponentially.  I’ve also found it more difficult to participate in activities like dance.  It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done.  I got more into writing and playing instruments after I got sick, and took up several other interests as well.  This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done.

Have you tried essential oils?

I have had several people tell me that my symptoms can be cured by essential oils.  I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms.  I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.

Aren’t you a little young to be dealing with these medical issues?

Yes, yes I am.  Another favorite response to this question is “apparently not!”  Chronic illness can strike at any age, it does not discriminate.  While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that.  Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends.

Why can’t you do this, but you can do that?

The environment I am in greatly influences whether I am able to perform a certain task or not.  If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them.  Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in.  Just because I can do something one day doesn’t mean I can repeat the same task the next day.

It would suck to be you

Actually, no.  Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise.  I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning.  As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition.  It’s important to be grateful for the opportunities I have.  My illness will always be something I have, and never who I am.


 

How Do People With Low Vision…Go To Restaurants?

I went out to dinner with one of my friends several weeks ago.  When we got to the restaurant, they requested that we get a large print menu, so that way I would be able to read it.  The server looked at us like we were absolutely insane, and told us just to hold the menu closer to our faces.  My friend was very surprised that there were no large print menus, or even Braille menus available, and figured it would be illegal to not have these menus available.  Truth is, restaurants aren’t legally required to provide accessible menus, and I’m yet to encounter a large print menu anywhere.  Here are some of my tips on how I navigate restaurants.

Read the menu online

Websites tend to be very good about accessibility and have PDF files or simple webpages for the menu.  If I know where I am going ahead of time, I will browse the menu online and pick a few dishes I might want.  For websites with poor contrast, I copy and paste the menu into a notepad or word processing program and increase the font.

Bring assistive technology

I often bring my SmartLux or use a magnification app on my phone to read menus on the go. The only pitfall is that lighting conditions can be less than ideal, or the fonts may be difficult to read, so this is not always reliable.

Have someone read you the menu

This is most discreet at places where the menu is printed on boards high off the ground.  Have a staff member or friend read items off the menu.  Alternatively, you can take a picture of the boards and then zoom in on the text.

Order the same thing as your friend

I tend to order the same thing as my friend if I find reading the menu too tedious or too frustrating.  No one has ever found this weird, and we also haven’t worried about confusing plates or things like that.  Luckily, a lot of my friends are used to me doing this.  Sometimes they will even just scan the menu for me and order me something they think I will like.

Always get the same thing

While he doesn’t have low vision, my brother will often order the same thing every time he goes to a restaurant.  Be it a burger, macaroni and cheese, or pizza, he says he never has to worry about reading a menu or being disappointed by trying a new thing.  If you develop a rotation of a few dishes at a particular restaurant, you can order easily and not have to worry about menu drama.

Think about silverware

One of my friends has said that one of the most amusing things to watch is me attempting to cut food and cutting either very large pieces or weirdly small ones.  When possible, I try to order foods that aren’t difficult to eat or that can’t easily spill.  At a restaurant that my friend and I go to often, the server will make a note to cut food ahead of time so that way I am not so frustrated.

Advocate for accessible menus

With the aging population increasing and low vision becoming more common, the demand will only continue to grow for accessible menus.  Encourage your favorite restaurants to print out a large print copy of the menu, or even order a Braille copy.  All patrons should be able to order with dignity and order what they want.

To The Parent Using Flash Photography in a Restaurant

Dear Parent,

I know you were very excited today to be attending the end-of-season party for your child’s sports team at a local restaurant today. The entire team was there, enjoying pizza and talking to each other, sometimes very loudly. There’s nothing wrong with enjoying the celebration, and this letter isn’t to complain about the noise (though my brother wasn’t happy about it being so loud). My problem is that to document this occasion, you decided to take several photos with the flash on. By doing this, you ruined my evening, and could have sent someone to the hospital.

You see, I have chronic migraines that are triggered by strobing or rapid flashing lights, such as those from a camera. When I see those lights, I get an intense migraine that knocks me out for a few hours. However, it’s not just me and fellow migraine sufferers who can have an adverse reaction to flashing lights. Photosensitive epilepsy is common in children, and those flashing lights could trigger a seizure. Seizures aren’t just limited to epilepsy, either- there are many other conditions that can have non-epileptic seizures caused by flashing lights. Some people have light sensitivity in general, and bright flashing lights can be an issue. Even people with anxiety disorders and PTSD can have flashing or strobing lights as a trigger. That’s a lot of people that could be affected by a rapid camera flash!

I understand wanting to photograph your child with their friends, but by using flash photography, you could be putting other people around you in danger. A better solution might be to take a big group photo at the beginning or end of the event, so that way you can see everyone. You can also just turn the flash off and continue taking pictures like you were, and simply retouch them for lighting later.

I’m pretty sure you ignored my mom when she told you that your camera could trigger a seizure, or a migraine like it had in me. My hope is that someday you will understand just how dangerous flashing lights can be for others, and you will think twice before using that camera flash in a crowded restaurant. For all you know, your child could develop a condition like this, and then you’ll be the one wishing all of the flashing lights would disappear.

Sincerely,

My head still hurts