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Migraine Stories: Catie, a College Student With Chronic Migraine

What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Catie, a college student with chronic migraineCatie is a 20-year-old college student who has had chronic migraine her entire life. She remembers her first attack at age three, but was not diagnosed until she was five. In writing how migraine shapes her life, she said, “Because I have been dealing with this for my entire life I have no idea what normality feels like, but I also have no idea what kind of person I would be today without it. Having to push through the pain has made me a diligent student and a more empathetic human being, and it has also taught me the value of self-care. Additionally, migraine has given me direction as a student of public health, and in the next few years I hope to do research on the relationship between chronic disease and mental health.” It was a pleasure getting to know this vibrant young woman.

Do you feel like you’ve missed out on school experiences because of chronic migraine?

I don’t necessarily feel like I’ve missed out on anything, but there are definitely certain college experiences that I can’t have as a migraineur. For example, I know that if I want to take care of myself I can’t drink a ton of coffee and pull an all-nighter or go out drinking and partying, because these situations all involve triggers for me. And while I don’t exactly long to partake in these activities, I often feel that I have a difficult time relating to my friends whose lives seem to revolve around them.

How do you manage school with chronic migraine? Do you have any tricks for making it easier? Do you manage differently in college than you did in high school?

I’ve found that managing college with chronic migraine is surprisingly doable so long as I keep in mind that life has not afforded me the luxury of procrastination. Because I have no way of knowing when a particularly bad attack will come on, I always make sure my work is done a few days in advance of the due date. Doing this helps prevent migraine from affecting my grades and holds me to the same standards as everyone else, which is important to me.

In my opinion, college is a much easier environment to navigate as a migraineur than high school. One reason for this is that college assignments are always given far in advance of the deadline. In high school, one bad attack could be enough to affect my grades since homework was due just a day or two after it was assigned. Additionally, college gives me the autonomy to decide if I’m feeling well enough to go to class or if I need to leave to take my medication. In high school, I didn’t get to make these decisions for myself, and that often resulted in delayed medication and worse attacks. Finally, in college all the course material—including PowerPoints and often lecture recordings—is posted online, so I am at less of a disadvantage if I do need to miss class.

What coping strategies do you use to deal with chronic migraine?

The most effective coping strategy for me is to think of all the positive ways migraine has impacted my life. Sure, migraine has caused me incredible amounts of pain over the years. But it has also profoundly influenced who I am. Migraine has helped shape me into a diligent student and a resilient, empathetic human being. I don’t know who I would be without migraine. So every time I have an attack, I have to tell myself that I’ll come out of it a little stronger. I hope that one day I won’t have to live with migraine. But I also have to accept the likelihood that it will always be a part of my life, and I have to be okay with that.

What symptoms bother you the most?

The pain is by far the worst part. It honestly feels like a thunderstorm in my head. I know how little sense that makes to most people, but I don’t know how else to describe it. I can feel the throbbing just by placing a finger on my temples, and the pain gradually centers above my right eye and becomes increasingly intense. It really feels as if the pain has no limit, and it’s very frightening.

What do you wish people knew about migraine?

I wish more people understood that migraine is a chronic disease that can affect a life as profoundly as diabetes or epilepsy. I think people tend to see migraine as a singular event, and that just doesn’t match up with my experience. So much of my life is centered on trying to avoid the pain. So when people who have had a few bad headaches claim that they “know exactly what I’m going through,” that feels really unfair to me.

What else would you like to share?

I would just like to share this photo of myself and my boyfriend, Nick. Nick has been phenomenal in helping me cope with migraine over the past couple years. He is known for spending entire Friday nights lying next to me in a dark room and for reminding me that my migraine attacks are not my fault—not even the ones that follow a moment of weakness involving a Starbucks latte (my biggest and most tempting trigger). I’m so grateful to have that kind of support.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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NDPH Stories: Mom of a Teenager With New Daily Persistent Headache

What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

A few weeks ago, you saw the story of Francesca, a 15-year-old who has new daily persistent headache. Kate, Francesca’s mom, shared her experience of parenting a teenager with NDPH.

What kinds of health care providers have been most helpful in
your daughter’s treatment?

Getting to this diagnosis was a long, difficult, and painful journey. Daughter kept complaining of headache after mono was supposedly over. Her doctor and several others could see no reason for a headache.

Started with pediatrician, then took her to ENT – discovered she had another sinus infection which was believed to be source of headache. Another round of antibiotics. Still complaining of headache. Back to ENT who put a camera up her nose, no sign of sinus infection.

Took her to a second pediatrician for second opinion as the headache was resulting in missing a lot of school. He performed an extensive battery of blood work, testing for everything including vitamin deficiencies. He called me and said, “there is no reason your daughter should not be in school, there is absolutely nothing wrong with her.” (He was wrong.)

Daughter started cutting school to stay home to sleep. When she was caught it was a real wake-up call for everyone. Her pediatrician said to take her to Stanford to see a pediatric neurologist. That was the first phase of getting to a real diagnosis. The neurologist immediately identified the headache as a chronic daily migraine, prescribed the COQ10, Maxalt and Topamax. We ended up changing docs after a few months as this one was very difficult to get an appointment with; Stanford had opened a new clinic in SF so transferred care to that site and saw a different Stanford neurologist for almost a year there. She took my daughter through the meds up through Propanolol and decided that my daughter would be better off at the adult headache clinic where, if accepted as a patient (she is a minor so it was up to the director) she would become eligible for more types of treatments. She had first appointment in July of this year – so far very happy with the clinic. On first visit there she was diagnosed with NDPH. It was bittersweet –having a name for this thing, but then learning more about it and slowly realizing how devastating it can be to a person’s life.

Do you have advice for anyone who is still searching for a doctor who knows about NDPH?

In our case, we did not know about NDPH until my daughter was diagnosed with it. If a headache is not going away, see a neurologist. Find a major medical clinic and go there. Major teaching hospitals are a good place to start. We are really fortunate to live near one of the finest medical centers in the world with a first rate clinic for headache and facial pain.

What other advice would you give someone with NDPH?
Don’t give up. Find a doctor that you trust. A doctor who also is a migraineur is a real plus.

Find a support group. You are often on your own in finding support. These seemed very elusive but I found a great group for parents on Facebook. It has been invaluable. It is a closed group, meaning you have to apply to be a member of the group. I cannot begin to tell you how alone I felt before finding that group, which has only been in the last six weeks. The collective knowledge in the group is amazing. There is also a group for teens and young adults. But even small children can have NDPH. As a parent it is critical that you find support and other parents to talk with. This is a huge, life-altering, debilitating illness. It is not a simple little headache.

What is the hardest part about your daughter having NDPH?

For the parent it is realizing that some of the dreams you have for your child may have to be adjusted. The route to college may not be the route you’d planned, you may have to look at alternate ways of just getting through high school. You have to be very flexible with your dreams, hopes and expectations.

It’s hard dealing with people who have no clue what it is and think that your kid is just pulling a fast one on you to get out of school. Let me tell you, it takes way more work to fake wellness than it does to fake illness.

School is stressful for both the child as patient as well as the parent. Even with a 504 plan, you really have to push and be your child’s advocate and sometimes it is exhausting. I know teachers have hard jobs but it is really discouraging when two out of six teachers show up for the 504 plan meeting at the beginning of the school year. It is especially frustrating to hear a teacher tell you that it is stressful for them to have your child in their class. Public schools are designed for healthy students. There is no mechanism in place to deal with a kid with a chronic illness.

It is hard to know how hard to push your kid. You have to communicate a lot to know when her physical limits are being reached. A lot of stuff doesn’t get done. Homework. Housework. A lot of stuff does get done: spending time together. Playing games together. When your kid is home by herself day after day, she is bound to get bored. She can’t sleep during the day due to the strict sleep regulations and is exhausted a lot, probably due to pain and depression. I’m a single mom working full time. But when I do get home, I have to try to push her to do some homework. She’s not always able to do it. Another side effect is an overall lack of organization, in part due to being overwhelmed by being so far behind, but I think the headache lends itself to that too. And if she’s had a true migraine, then she often gets a “migraine hangover.” Anyway, we play games together – there are a couple that we like to play on the iPad. One of our favorites is 7 Words. We don’t have traditional television, we stream everything. When she is feeling exceptionally crappy, I don’t limit the television. We have a couple of shows that we like to watch together, like “Big Bang Theory” and “Castle.” We do these things because she really isn’t up to doing other things like homework. It’s hard because I think others judge us, judge me for my parenting, and they are not in this situation. It’s really easy to say “If I were the one in that situation I would do X, Y, and Z.” But the reality is – we never truly know how we will react in any given situation until we are faced with it ourselves.

What else would you like to say about NDPH?

An UPside to NDPH is that I think it has brought my daughter me closer together.

Also, please stop asking me if my daughter’s headache has gone away. You will know if and when this happens. I will hire a skywriter and host the largest fireworks show known to mankind. It is not a series of multiple headaches, it is ONE LONG HEADACHE THAT NEVER ENDS.

Learning about other people’s treatment can help us figure out our own. Here’s what Francesca has tried and is currently doing.

Topamax, which was effective for about a year and got the headache down to a 2 or 3 on the pain scale. Then it stopped working. A sinus infection may have triggered the spike back up, it has been at a six or greater on the pain scale since February of this year. Verapamil, propanolol and microgestin (birth control) were all ineffective. Doxycycline was  ineffective and very poorly tolerated.

Also: tested for allergies, both for common things in the house and nature, and another for foods. Had several that were in the “might cause problems if around enough of it category” so we use special bedding to limit exposure to dust mites in pillows and mattress. Also on montelukast sodium (generic for Singulair) and loratadine (generic for Claritin) daily.

Recently started taking an anti-depressant at my request. While not exhibiting outward signs of depression, I think that it would stand to reason that someone experiencing pain at this level and also dealing with the social isolation caused by missed school would have to be somewhat depressed. Neurologist agreed, so prescribed escitaloprma oxalate (generic for Lexapro).

Ondasetron (generic for Zofran) for nausea brought on when NDPH spikes to migraine.

Botox – had her first round of injections in November, unknown if effective yet.

Acute meds: Originally was given 25 mg sumatriptan (generic for Imitrex); ineffective (we now know the dose was way too low, given at a pediatric dose for a person who at the time was already the size of an adult). Rizatriptan benzoate (generic for Maxalt) worked for about a year, then stopped working. Now taking sumatriptan at 100 mg and that is working to bring migraine down. NDPH remains. So pain goes from an 8 when spiking to migraine back down to a six.

Supplements: COQ10 and melatonin to aid sleep

Lifestyle:

  • Absolute regular sleep schedule, in bed by 10 pm up at 6 am 7 days a week
  • Sunglasses whenever outside
  • Carries earplugs to use when around loud noise such as on school bus
  • Sees therapist to work through issues about school/pain/teen life

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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NDPH Stories: Teenager With New Daily Persistent Headache

Sharing readers’ stories is something I did in the early days of The Daily Headache, but it fell aside when I got to sick to cope. After emailing with the mother of a teenager with new daily persistent headache (NDPH), I decided to revive this feature. To share your story, send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.

Fifteen-year-old Francesca has had new daily persistent headache (NDPH) since she had Epstein-Barr mononucleosis in November 2012. She also has migraine. This is Francesca’s story. Soon, I’ll share what her mom, Kate, has to say about her daughter’s experience. [updated with link to Kate’s story]

What are your symptoms? How severe is the pain?

My headache pain can vary. For the last six months it has been a 6 out of 10 on the pain scale. Usually it’s on my temples and is more intense on my left side. Often it hurts in the back of my head near the base of my skull. I am sensitive to light, sound, and some sharp smells, they can increase the pain.

NDPH often comes on after an illness, accident or medical event. Did you have a precipitating event?

Before I had NDPH in my last year of junior high I got mono in the beginning of November. That lasted about two months or longer. After that I had multiple back-to-back sinus infections. I was still sick after that and I went to various doctors that kept giving the same answer that I was not sick. My mother then took me to a neurologist who diagnosed me with chronic daily headaches.

What is the hardest part about having NDPH?

The struggle doing daily activities that come natural to healthy people. Being sensitive to lights, sounds, and sometimes smells conflict with simple tasks. Sometimes when I stay at home with a migraine I can’t even leave the dark den because when I move in unfavorable ways the pain flares up. The days I do go to school it’s extremely hard to focus. During classes, I’ll try to listen but then zone out. When I snap back to reality I realize I missed some of the lecture and notes.

What do you wish everyone knew about NDPH?

Not everyone knows about it because informing lots people doesn’t really help anyone. Unless there is a person in their daily lives expressing the pain of NDPH, they cannot understand the struggles and stress that family members and the patient live with. Those who sympathize but do not witness the pain cannot truly comprehend.

What other advice would you give someone with NDPH?

The pain extremely sucks at the beginning and it will continue to suck for however long you will have it. You are probably confused or tired of the continuous pain and want it to go away fast. Gradually you’ll understand that getting healthy again is a slow process and you may suffer for a long time. Being a student who has NDPH it is quite hard because you have to go to school. Some teachers sympathize and give you the support and others can’t understand why you can’t just do the work because it is “only a headache.” They just don’t get it.

I’m not saying it’s not hard for an adult who has NDPH because they have to deal with the responsibilities of an adult and be functional and responsible.

But you can’t become a functional adult in society and be constantly tied down when you are still in your teens.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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Migraine Documentary in the Works

Out of My Head migraine documentary Kickstarter“Out of My Head,” the documentary that the Migraine Project is producing, looks to be an excellent film detailing the intricacies of migraine in an engaging, thought-provoking way. The filmmakers, director Susanna Styron and producer Jacki Ochs, have interviewed top experts in the field and many people who have migraine. The trailer includes top-notch information and illustrative descriptions of symptoms. As professional filmmakers, Styron and Ochs are working on what looks to be a high-quality film.

Neither Styron or Ochs have migraine. You may be surprised that I find this encouraging. To me, it signals a deep commitment to telling the broad story of migraine and its impact, rather than only the story of one or two people. I also think it provides an advantage in creating a film that appeals to people without migraine, which improves the chances of raising awareness. That’s not to say they’re disconnected from the emotional landscape — they’re both motivated by their love of people with migraine, including Styron’s daughter.

“Out of My Head” promises to be an excellent film that reaches a wide audience — the filmmakers have a distribution plan that includes screenings at film festivals, educational institutions, medical schools, clinics, hospitals and patient/advocacy organizations. But it’s not quite ready.

The Migraine Project is doing a Kickstarter campaign to fund the work necessary to finish the film. As I type, they’re $13,224 away from their all-or-nothing goal of $92,000, which they must reach by 6 p.m. MST on . Please watch the trailer and read about Out of My Head on Kickstarter and consider making a donation if you’re able. It’s an impressive project spearheaded by experienced professionals that I believe will result in an excellent awareness-raising migraine documentary.

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Migraine and Chronic Pain in Teenagers

Having a chronic illness or chronic pain is life-altering and the stigma of invisible illness can be infuriating for anyone, but it can be especially difficult for teenagers. Sometimes the very people who are supposed to support and protect them — teachers, coaches, school nurses, doctors and even parents — don’t even believe them. (Sadly, many of you don’t have to imagine this scenario because you lived it.)

Psychology professor and Psychology Today blogger Nancy Darling, whose teen son has migraine, provides an insightful and touching take on migraine and chronic pain in teenagers.

Withdrawn, Irritable Teen? Is It A Migraine? points out that migraine often doesn’t look like migraine and that the associated absentmindedness, irritability and isolation can look like a normal “teenage funk.” She also explains why migraine looks so much like a kid trying to get out of going to school.

Children Who Go to School in Pain walks readers through a day when her son has a migraine. The most poignant part is “faking being well.” That’s right, despite the common accusation that the chronically ill are faking illness, many of us are actually faking being well. Whether you’re a teenager or adult, I’m betting that resonates with many of you; it certainly does me.

Please take a look at Dr. Darling’s posts. Even if you’re not a parent, the struggles she describes are important for everyone to be aware of. As a former teenager with chronic illness, I’m relieved to read about a topic that gets far too little attention.