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.

My College Bed

My College Bed

When I was shopping in preparation for freshman move-in, one of the main things I focused on was my bed.  I have Chiari Malformation, which causes severe back and neck pain, as well as chronic migraines that can only be treated with sleep, so I spend more time resting in bed than the average college student.  Because of this, it was extremely important that my bed be as comfortable as possible, and be a place where I could easily recharge, as well as manage my pain.  Here is everything I have for my bed, starting from the foundation.  I live in a single room, meaning I am the only one in my bedroom.

Mattress

While I didn’t have to buy this, I thought it might be helpful to show off my mattress with nothing on it.  While it is possible to request a full size mattress through disability housing, I have the standard college sized mattress, which is a Twin XL.  After sleeping on it at college orientation with nothing (and lots of back spasms), I got an idea of what I would want to look for in padding.

Wamsutta Cool and Fresh Fiberbed

The Wamsutta Cool and Fresh Fiberbed is the only mattress topper I have ever needed for my dorm bed.  It is very soft, but still provides fantastic support.  It also fits nicely in the college washing machines.  I never had to add any other mattress supports, as this provides everything I needed.  It is a soft pillow top cover that fits my mattress exactly.  It can be found at Bed, Bath and Beyond and Amazon.

Room Essentials Pocket Sheets

I bought a fitted sheet for my bed as well as several different pillowcases from the Room Essentials brand at Target.  They are easy to care for and remind me of t-shirt material.  One of my favorite features is that the fitted sheet contains side pockets, which work as a great holding place for my glasses at night.  I bought two fitted sheets and seven pillowcases (more on why I bought so many later in the post).  Sheets can be purchased here, and pillowcases can be purchased here, but are only available in-store in some regions.

Life Comfort Blanket

I bought this blanket from Costco about two years ago and loved how soft it was- in fact, I fell asleep during move-in while using it.  One downside though was that it MUST be washed before first use, or else it sheds everywhere!  I was covered in gray fuzzballs, but the problem went away right after I washed the blanket.  It can be found on Amazon here.

Twin XL Heated blanket

My college allows students to have heated blankets, but not heated mattress pads.  I received a heated blanket as a Christmas present in high school, and it has been one of my favorite gifts ever.  I got a Twin XL sized blanket for college, and I use it often- I like to turn it on a few minutes before I go to bed so that my bed warms up.  I cannot find a link for the one I have, but it was purchased for less than $50 at Bed, Bath, and Beyond.

Room Essentials Microplush Blanket

This blanket is great for layering with other blankets, or simply on its own.  I have a very similar blanket on bed at home, so I knew I would want one in college as well.  It hangs off my bed a bit, but I think that is because of how my bed is pushed against the wall.  Get it at Target. 

Room Essentials or Xhilaration Comforter

I have both Room Essentials and Xhilaration comforters layered on my bed.  They are fairly lightweight, and I can also rearrange my blankets so that I am sleeping on top of one (the comforter pictured is from Xhilaration).  I found very little difference between the Twin and Twin XL sizes between these brands, as the comforter on top was labeled a Twin size and it generously covers my bed.  They come in a variety of designs- here is my Room Essentials comforter, and here is my exact Xhilaration comforter.

Yogibo Caterpillar Roll

This pillow is what keeps me from rolling face first into the wall every morning, a problem that I often faced when I lived in a dorm with concrete walls.  It also provides great support for my back when I sleep on my side.  Get it from the Yogibo website or on Amazon, with Prime shipping.

Room Essentials Extra-Firm Pillow

I needed a pillow that was cheap in comparison to my other pillows that I could use for layering, so picked up one of these at Target.  I don’t use this as my main pillow, so it didn’t really matter how much support it had.  Get it at Target here.

Beauty Rest Extra Firm Pillows

Why do I have five of these pillows?  Well, with all of my different spasms, I have found that these pillows, in combination with firmer ones, provide optimal support and help me rest when I have terrible pain.  They do not put additional strain on my neck, and I can sleep in any position that I want.  Why do I have an odd number of these pillows when they come in packages of two?  I don’t know.  I originally purchased these from Costco, but they appear to no longer be available.  Get them from Amazon with Prime shipping here.

Yogibo Sleepybo

I talk about Yogibo products more here, but this Sleepybo is a very firm pillow that reminds me of my beloved Yogibo at home.  This pillow works amazing when I have pain behind my eyes or for elevating my legs.  It is also one of the main pillows I use at night.  It is currently out of stock on the Yogibo website, but can be found here.

Purelux comfort cool pillow

Another great Costco purchase, this is the firmest pillow I have, and the cooling sensation is absolutely amazing when my migraines make it feel like my hair weighs a hundred pounds.  It also has a curved end, so I can insert in a neck pillow if I need one, which works awesome for when I have neck spasms.  I found it on Amazon here.

Cozybo

Since I use so many blankets,  I like to keep a lightweight one at the top for when I am sensitive to temperature, or suddenly develop a migraine and find that it’s too much energy to be underneath the covers.  As mentioned in my Yogibo review, this is my brother’s favorite blanket and Yogibo product, because it is both warm and lightweight, and the material is very smooth.  Get it on the Yogibo website here.

How I stack pillows

When I stack my pillows to go to sleep, I usually do it in this order:

  • Cooling pillow on the bottom
  • Beautyrest pillow
  • Sleepybo
  • Beautyrest pillow
  • Beautyrest pillow between pillow stack and wall
  • Extra firm pillow on side facing wall
  • Beautyrest pillow on side facing wall
  • Extra Beautyrest pillow for rearranging or against the wall

Toddler Safety Bedrail

So, my first morning in my dorm room, I rolled out of bed…and then fell three feet to the floor because I forgot how high the bed was.  My parents bought me one of these toddler safety bedrails from Wal-Mart and set it up for me, so I wouldn’t do something like that again.  Weirdly enough, I’ve gotten lots of compliments from friends who would visit my apartment and talk about how they were constantly falling out of bed.  It also helps to reinforce my stack of pillows. Get it from Walmart here.

I am lucky to be able to sleep for hours at a time, and have so many things to help me sleep as well.  A lot of these items will be on sale in the coming weeks for back-to-school, so keep an eye out and set price drop alerts!

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Yogibo for Chronic Pain


I first learned about Yogibo long before I had chronic pain when we visited a store in Connecticut. My brother and I both loved how cozy everything was, but it wasn’t until years later that we discovered how amazing Yogibo really is.

I started dealing with chronic pain as a result of Chiari Malformation, a structural neurological condition, when I was fourteen years old, though I didn’t receive a diagnosis for four years. With this condition, I have constant pain in the back of my head, neck, and back, as well as the back of my legs and arms. I also get spasms and migraines, which makes the pain worse. I was also in a car accident that damaged my neck and increased my normal base pain level in my neck when I was a freshman in college. While I am very good at functioning through my pain, I rely on a lot of special tools to help me with pain management. A lot of these tools are Yogibo products.

Yogibos are similar to bean bags, but with much smaller beads and smooth fabrics, instead of crunchy feeling covers. They make a variety of products such as giant pillows, bedding, supports, and even aromatherapy. Their main target audience is children with sensory disorders, but the products are amazing for people with chronic pain as well. My brother and I have never encountered a product we didn’t like, and have difficulty picking a favorite. Below, I have outlined ten of my favorite Yogibo products and shown how they help me manage my chronic pain. This post is not sponsored by Yogibo, I genuinely love their products and want to share my favorites.

Yogibo Max
My first Yogibo product was purchased nearly four years ago when we moved to a new house and my brother and I got the Yogibo Max for our rooms. I spend hours lying down on it, as the support is perfect for my back and legs, and does not aggravate my pain. It’s easy to fall asleep on too, which is great when a migraine suddenly hits. When I broke my ankle, I found that lying on the Yogibo was one of the only ways I could relieve the pain. My friends and I use it as seating when they visit as well. This is the only Yogibo product I do not have at college with me due to its size, which is comparable to my Twin XL bed. Get it here.

Caterpillar Roll
I originally purchased this because I kept rolling into the wall while I was sleeping and would hit myself in the face. I have found that when I sleep on my side, the roll provides awesome support for my back, and combines the firm support of the original Yogibo with the soft cozy feeling of my bed. On particularly bad spasm days, I twist the roll so it wraps around my abdomen and provides compression. Get it here.

Yogibo Support
When I found out I couldn’t fit most Yogibo products into my freshman dorm, I was recommended the Support pillow. I most often use it when I am in the end stages of a migraine when I can use my electronics, but sitting upright is too much of a challenge. My friends also frequently sit on the floor with it- one of my friends will walk into my room and immediately grab it, and frequently talks about how much they like it. Get it here.

Zipparoll
After I was in a car accident and started having more neck pain than I ever had before, I was trying every neck pillow in sight, hoping it would help me manage my pain. The ZippaRoll became a fast favorite because of the familiar smooth and supportive material, as well as the fact it could be configured into a variety of shapes, as well as keep ice packs from falling down. I used it both on its own and in conjunction with other pillows. It also works well for lower back support when in the car. Get it here.

Moon Pillow
I purchased this around the same time as the ZippaRoll when looking for neck pillows. I found that it provided phenomenal back support when I was sitting upright, and worked as a neck pillow when I was lying down. I can put it underneath my hip when sleeping on my side, or underneath my chin to make sure I don’t strain my neck while sleeping. I also use it combined with the Yogibo Support. Get it here.

StressLess
This is one of the only tools that helps my shoulder spasms, and has helped me fall asleep many nights. I found that throwing it in the microwave for a minute and setting it on my shoulders provides an amazing soothing feeling unlike anything else. When I start getting spasms while talking to friends on voice chat, they will tell me to go microwave my shoulder pillow. It can also be thrown in the freezer, but I find that my shoulder spasms are more receptive to heat. It is an aromatherapy product, but this does not bother me as I find the scent relaxing. Get it here.

BodyHug
One of the newest additions to my collection, the BodyHug is another aromatherapy pillow. I typically use this for cold therapy on my back, and it also helps with my shoulders when I am lying on my stomach. I’ve also had friends borrow it when they had very bad abdominal cramps- some preferred to warm it in the microwave for about 30 seconds, others preferred the cooling sensation. Get it here.

Yogibo Mate
This may seem like a silly choice, as it is a stuffed animal made out of Yogibo material. I got one of these when I had eye surgery in December and found that it was great to lean against and squeeze, and I could easily rest on top of it if needed. Mine is a sloth, but there are other choices. Get it here.

Cozybo
My mom had bought this for me online and had it waiting for me at home. When it came in the mail though, my brother looked at it, felt it, went “hey this is awesome,” and promptly took it upstairs to take a nap. He says if he had to choose a favorite Yogibo product, it would be this one. I’ve since gotten my own, and it’s my default choice for when I take a blanket in the car, as well as during the warm summer months. I love the smooth material and how it is the perfect weight. Get it here.

Sleepybo
Another pillow that my brother enjoys, this is a normal sized pillow filled with Yogibo material. This was awesome after my eye surgery when I had to spend a while in bed, and it is one of my favorite pillows that I own. I like to stack it with another firmer pillow on the bottom and a softer pillow on top for optimal comfort. It’s currently out of stock online, but you can find it here.

 

Some of the other products currently on my wish list include the Ms. Bliss weighted blanket, WristWiz keyboard support, Yogibo round pillow, and Yogibo cube. My brother has also wanted to try the Lukso fitted sheet, Ms. Bliss weighted blanket, SinusMinus, and Yogibo Double. We both love Yogibo products, and love stopping by the stores whenever we see one- unfortunately, the closest one is currently almost two hours away.

Overall, I can’t imagine managing my chronic pain without Yogibo. As I finish typing this, I have the StressLess in the microwave and am sitting against the Yogibo Support with the Moon Pillow while wrapped in the CozyBo. These products are amazing for my pain management, and I am always quick to recommend them when a friend is dealing with pain. These products really are that incredible.

10 Staff Members To Meet in College


Before I even started at my university, I had already talked to almost three dozen faculty and staff members on the phone and in person to ensure that I would not have any disruptions in receiving my approved classroom and housing accommodations.  Because of this, I was able to learn what staff members would best help me advocate for myself and that would help me while I was in the classroom or in my dorm.  Here are ten staff members that I highly recommend talking to before move-in or the first day of classes.  Please note that some colleges might have more than one person in these positions.

Disability Services Coordinator

Before I even applied to my university, I interviewed the Disability Services office multiple times about how they handled students with low vision (read more about my questions here).  Luckily, the department is very proactive, allowing students to set up accommodations before any problems sink in, and I was assigned a coordinator that specifically worked with students who were blind or had low vision.  The first staff member I worked with was a wonderful resource and helped me write out an accommodation plan that ensured I would receive all of my services  I can’t say enough nice things about them.  Read more about my experiences setting up a file here.

Assistive Technology Specialist

Assistive technology will be your best friend in college, and it always alarms me when students don’t embrace it.  I was an unique case when I arrived at my university- as one of my colleagues puts it, “most college students don’t come in knowing what assistive technology is, let alone wanting to study it.”  The assistive technology department can help with assessments, scanning in textbooks, and providing access to labs.  Some assistive technology departments also organize testing centers for students with disabilities.

Testing Coordinator

The testing coordinator helps make sure that students are able to take tests, quizzes, exams, and more in an environment where they can receive their accommodations.  Students can be referred to this department either by the assistive technology specialist or through Disability Services.  Testing accommodations are typically written in to the Disability Services file, but some testing centers develop their own student files.  It helps to talk to this person before the first day of classes because some majors may require a placement test for math, foreign language, or English classes.  Read more about my experiences with the testing center here.

Special Populations Housing Coordinator

This person is likely part of the committee that handles the special housing requests, and ultimately assigns students with special housing needs to their spaces.  When I had issues with not being approved for special housing as well as my first housing assignment, this person helped ensure that I received the accommodations I requested, and assisted me in finding an accessible room.  This was incredibly helpful with my housing this year, as I am able to stay in the same dorm room that I did last year.  Read more about my housing accommodations here.

Resident Director

This is the staff member that oversees the dorm building and actually lives there as well.  My resident director has been awesome about relaying important information and is a great person to talk to if there is a problem.  They also have helped me with navigating outside and preparing for inclement weather.

Academic Advisor

Each major has an advisor that assists students with picking out class schedules, and can also assist if there is an issue with the professor.  They also tend to be very honest about which professors embrace having students with disabilities in the classroom, and which professors are more hesitant.  Some departments may have advisors also be professors, while others have one or two people that are full-time advisors.

Student Support Specialist

For students who are apprehensive about a situation or potential situation, talking to a member of the Student Support staff can be a great help.  When I was worried about a situation with another student, the staff listened to all of my concerns and helped me develop a plan to ensure that I wouldn’t have to worry about the situation anymore.  This department usually has a confidentiality agreement in place, meaning that they do not have to report what is said in the meetings unless the student requests that they do so.

Security/Police

I made a note with university police that I use a blindness cane and have low vision, so that they would be able to assist me easier if I called.  I also made a note of what room I lived in on campus so if there was a fire alarm and I couldn’t escape, they would know where to find me.  One of my friends who has a severe medical condition gave police an abbreviated medical history, so they could assist emergency medical staff in administering care.

Student Health

While I didn’t work with them until I had my first visit, having a copy of your medical history and health insurance with the Student Health office can be invaluable, especially if you have a chronic illness.  I have a note in my file that I have Chiari Malformation, chronic pain, chronic migraines, and low vision.  Read more about my experiences with Student Health here.

Mail Services Coordinator

This may seem random, but talking to the Mail Services coordinator is very important.  With my low vision, I cannot use combination locks, so I contacted this person to ensure that the mailbox assigned to me would be one that uses a key.  Another one of my friends contacted them to ensure their mailbox would be accessible to someone using mobility aids that couldn’t bend over.  In the event that it’s impossible to go get mail, you can contact the coordinator to authorize someone else to pick up mail as well- I authorized my resident advisor to get my mail after I was in a car accident, and other friends have authorized me to pick up their mail while they were in the hospital.

While not everyone may need to talk to each type of person on the list, I have been grateful for the resources that each of these people have provided me with.  They all have helped, in one way or another, to ensure that I am thriving in the college environment.

How to Deal With Being Sick in College

I seem to get sick once a semester, and because of my existing chronic illness, I am more miserable than a majority of my friends, who just have whatever sickness is going around. One of the main reasons I am so miserable is because with Chiari Malformation, my head pain gets worse every time I sneeze or cough, and my vision also becomes extremely difficult to control. Thankfully I’ve already been sick once this semester, so I shouldn’t have to worry about getting sick again. Here are some of my tips for dealing with being sick in college.

Have a pre existing file with Student Health/Campus Clinic

My file contains information like my drug allergies/intolerances and a summary of my low vision and Chiari Malformation, as well as other chronic conditions. I also have a list of medication I am on and an abbreviated medical history. This helps the doctors because they don’t have to ask for a lot of information from me.

Skype into class

Since no one else wants to get sick either, ask to Skype or phone call into class for the day. If this is not an option, ask the professor for guidance on class attendance.

 

Have food delivered or ready to be picked up

 

The dining hall at my school has special prepackaged meals that can be picked up by a friend or RA for a student who is sick. If that isn’t possible, try to visit the dining hall during the off hours, and avoid touching things as much as possible.

 

Have over the counter medication delivered

 

I stocked up on over the counter meds when I got sick by ordering them using Amazon PrimeNow. At the time, everything was sold out on campus because so many students were sick, so this system worked. If you must travel somewhere off campus, try not to take the bus, and instead ask for a friend to drive you. Bonus points if this friend has already been sick and/or is the one that made you sick.

 

Spend time recovering

 

Don’t just mask the illness, make sure to treat it and spend time resting. The last time I was sick, I found myself sleeping for several hours, something that helped my migraines and eyesight tremendously. By spending time away from others, you will be able to relax and focus on getting better.

To anyone reading this out of necessity, I hope you feel better soon!