Category: Reader Stories

Reader Stories

Chronic Migraine Attitude Determines Altitude for Sarah

Kerrie Smyres

Sarah, a 20-year-old student at Brigham Young University—Idaho, shared this essay she wrote about living with chronic migraine for her English class.

Pain in My Brain

By Sarah Smith

chronic-migraine-attitudeI bury my head into my pillow trying to apply pressure to my skull. I pull up the covers to block out any light and hopefully to muffle any sound. I lay there motionless. My head throbs, pulsating, feeling as if at any moment it may explode. Dizziness sets in, and I continue to not move; maybe it’ll go away. I start to feel nauseous. I lay there with nothing but this pain and my thoughts: “How long will this last? Why can’t things just be normal?”

I have suffered from chronic migraine since I was five years old. Growing up, doctors would tell me that, “Your migraines will probably go away when you have menopause.” This was not very reassuring to hear. When I reached the age of 14, I started going to a neurologist. I would meet with him every three months and answer all of his questions and give him a review of my health. He prescribed me some medication that only helped some of the time. Eventually, when I was about 15, my neurologist suggested that I get an MRI, which I did, but there was nothing to be found. I continued to take medications for my migraines until I was about 17 when I decided that I didn’t want to be dependent on pills, and that I should try to figure out the triggers that cause my migraines.

Because I get migraines so often, about 3-4 days a week, it was/is hard to pinpoint exactly what the triggers are. It didn’t take long to discover my biggest migraine culprit – florescent lighting. Since the lighting of a room is not something I get to decide, it is extremely difficult to prevent a migraine from happening in these situations. If I’m in a room with florescent lights for a short period time, it’s not that much of a problem. However, high school was incredibly difficult for me, because I was around these lights for eight hours at a time. Much of the time my migraines will last more than a day. Because of this, I would go to school for a day, get a migraine, and miss the following day. This happened so frequently that I missed a large portion of my senior year and almost didn’t graduate.

Some of my other triggers include wind, long exposure to the sun, bright lights, loud noises, inconsistent sleep schedule, and eating more sugar than normal. The symptoms I have from migraines vary on the degree of pain. I usually experience blurry vision, dizziness, nausea, and severe headache.

I have found that the best cure for a migraine is simply to sleep. I will often also take ibuprofen or Excedrin Tension Migraine. Sometimes, even these don’t work, and I just have to wait the migraine out. These are the worst types of migraines, because no matter what I do I just need to let the migraine run its course.

In addition to almost not graduating high school, my migraines have impaired other aspects of my life. When I have a migraine I can’t go out and do the things that everyone else is doing. This was especially hard while growing up, because all I wanted to do was play with the other kids and do what they were doing. It was also hard to explain why I couldn’t go out and play with them. Most children don’t understand what a headache is, let alone a migraine. So in addition to being left out, I was also misunderstood. All I wanted to do was fit in.

In the end, I learned that the state of my health was not the determinant of the relationships I had with my friends. My attitude and character were the deciding factors of my relationships with others. Although I may not have had a physical presence some of the time, I was still able to have a bond with my friends. It also helped that they were genuinely acceptive of me, which made me incredibly grateful.

There is a saying, “Attitude determines altitude.” I have come to believe this. It has helped me to cope with a debilitating chronic illness, and it has brought me closer to my friends, family and God. Thomas S. Monson shared his thoughts on attitude which has been a great inspiration for me. He said, “So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment. We can’t direct the wind, but we can adjust the sails. For maximum happiness, peace and contentment, may we choose a positive attitude.”

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

Doctors, Reader Stories

A Neurologist’s Gifts of Skill and Compassion

Kerrie Smyres

Reader Joanell Serra wrote this thoughtful essay about her neurologist as a guest post for The Daily Headache. 

Injection-able Moments

By Joanell Serra

If you met my doctor in a coffee shop, you might guess he’s a bartender, or a school teacher. Not a renowned neurologist. He lacks the arrogance and aloofness of a typical top specialist.

Dr. M greets me like a friend in the waiting room, jokes as he hands me a three page patient release form, and chats as he fills an enormous syringe with toxins, steroids, and other potions. Today, he’s attempting to block my occipital nerve, the apparent culprit for my migraine.

The first time I came here, he asked me why I was switching doctors.

“My old neurologist doesn’t like immigrants,” I said. “He told me Trump was the only one who could save us. We needed to build a wall to protect ourselves from the Latinos, and throw the Muslims out too. I couldn’t go back to him, regardless of his medical expertise.”

“That’s terrible.” Dr. M commiserated. After a moment’s pause, he added. “I’m an immigrant you know.”

He explained his long history of migration, from the middle-east, through Europe, all the way to UCSF.

His fingers probe my scalp, until he locates a spot at the base of my neck. The needle goes in, pain waves coursing from my spine to my face, radiating from my jaw to the outer edge of my eye.

I try to be still while cursing quietly. This pain means he’s on track. He has the right spot.

“Keep breathing.” He says. “Think about a moment in your childhood.”

“Are you kidding me?” I blurt out. “That won’t help me relax!”

We stop while we both laugh, and catch our breath. We are temporarily joined in this partnership: he administers pain. I weather it. Together, we might beat this thing. Although the odds are against us. Most chronic migraineurs get worse over time, not better.

My headaches cause bizarre symptoms, but Dr. M consistently reassures me.

“Is it normal that it’s worse when it rains?” I ask him.

“Yes.”

“And that words move on the page if I try to read?”

“Absolutely. Common problem.”

“And my teeth hurt, my hands go numb, and I can smell onions cooking in a house around the corner?”

“Typical.”

He doesn’t offer me false hope, or an instant cure. But there’s healing in knowing I am not alone.

In a time when our politicians demonize immigrants, and threaten to expunge them from our midst, my health relies on the skills of this one. And I’m glad it does.

I’m so grateful Dr. M crossed the world to be here, in this moment, my doctor. Whatever made him immigrate—probably very challenging reasons—I’m better off for it, as are his many patients.

Dr. M brought with him not only a passion for medicine, and surgical skill, but warmth, a sense of humor, and an eagerness to partner with me in this difficult process. These are all gifts. I appreciate them. Even his skill with a very long needle.

Joanell Serra MFT lives and writes in Northern California. An award winning playwright, and short story writer, she has published stories in Eclectica, Blue Lake Review, Black Fox Literary Magazine, Poydras Review and LimeHawk.  She attended the Santa Barbara’s Writer’s Conference as a prize winner, and belongs to the Squaw Valley Community of Writers and the California Writers Club. Her story, Night Swimming was recently chosen and performed by Wild Sound Festival (June 2016).  She plans to publish her novel, Tangled Vines, in 2017. You can read more of her work and find links to many of her stories at www.joanellwrites.com.

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

30 Things Meme, Community, Reader Stories

30 Things for Migraine and Headache Awareness: Share Your Story!

Kerrie Smyres

Share your story! 30 Things Migraine and Headache Awareness MemeRaise migraine and headache awareness by sharing your 30 Things! Here’s how: Instructions and Submission Form for 30 Things for Migraine and Headache Awareness

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

 

 

Chronic Migraine, Reader Stories

Migraine Stories: Insights from a Teenager With Chronic Migraine

Kerrie Smyres

Having chronic migraine is always difficult, but living with migraine as a teenager is particularly tough. At the age of 17, Sidney already knows how devastating chronic migraine can be. It’s impact reverberates throughout her life, especially in lost friendships and being behind in school. Yesterday she began a stay at a comprehensive pediatric pain rehabilitation center—please keep her in your thoughts as she goes through this intense process. I so hope she finds some relief. She shares her story up to now with you below. She’s also making notes about her stay at the pain clinic and hopes to share the experience with you. 

Here’s how to share your story. And you can read more readers’ stories here.

Migraine Background

My diagnosis is chronic migraine headache with (occasionally) aura, light and sound sensitivity, lightheadedness/dizziness, and nausea but thankfully without vomiting. I am 17. I was diagnosed with episodic migraines when I was about 5 years old. I’ve had them ever since I can remember and my parents say that I started complaining of them as soon as I could articulate what was going on. I find the fact that chronic pain and illness in general is so unknown. But maybe that’s a side effect of such a widespread thing. All the people who experience it are forced to isolate themselves, so we don’t ever see them.

Migraine’s Impact on Sidney’s Social Life, School

This illness has taught me that I’m very comfortable being by myself and that I don’t need a constant companion to be happy. But, it’s a catch 22. I can actually be SO comfortable by myself that ‘alone time’ can stretch on until I’ve isolated myself too much. I will list the affected areas in the order they have been most impacted:

1) My social life. Since my illness started 4 years ago I have moved once. I had already lost most of my friends before I moved but I was able to hold on to 2 really essential people I care about. Since moving, I haven’t been able to make any friends.

2) School. I should be graduating this year, and the two really good friends I mentioned earlier are. But because of my migraines, I have fallen at least a full year behind on school, if not more.

Coping

migraine-teenager-dogsI would have to say that at this period of time, I’m not coping very well, and that my main coping source comes from my pets. My relationships have pretty much been beaten down to my parents. I’ve been surprised by how much closer this has brought me to my Mom, and how it’s made me realize how similar I am to my Dad. My parents show their support by continuing to put up with me. I don’t always (most always) make it easy and I can’t put into words how much I appreciate that simple fact. I have one really good relationship with a health care provider and the others are just okay. I really like my neurologist (who is actually a headache specialist), and the others (like psychiatrist and therapist) are supportive but not really knowledgeable of my illness. They each support me in the ways that they know how, and that’s all I can really ask for.

Nerve Stimulator: Relief… Until it Stopped Working

migraine-teenager-nerve-stimulatorI got the neurostimulator trial in June 2015. The electric leads go from the occipital area in the back of my head and over my ears to my forehead just above the eyebrows. [The leads are external, as this photo shows, only during the trial.] The rechargeable battery is about the same size as a pacemaker and was implanted in my non-dominant shoulder. My scar is about an inch long and is easily covered up. Usually for the first year, the stimulator needs to be readjusted for intensity and duration. This implant is very similar to what someone with chronic back pain would get.

During the trial and for the first few weeks I had the implant, my pain was kept at 5/10 at the most, and 0 pain at the least. I was singing hallelujah! Then after my grandmother died in the beginning of September, the stim stopped working. I don’t know if stress, or grief, or this crazy idea that my body learns to reject any type of treatment provided, but that was a big blow to take.

Now, for any of you that might want to check this out, there are two problems to consider: 1. You have to be referred or seen by a headache specialist. 2. The stim is VERY EXPENSIVE! My co-payment was about $10,000 with insurance paying much more. That being said, I hope there are some of you out there who can use find relief from this treatment.

Sidney’s Advice for Others With Migraine

My advice would be to make sure you like your provider and you feel that they are actually helping you. I’ve found that any Dr. I didn’t like, I didn’t feel was giving me proper support. Also, don’t be afraid to change providers if you’ve come to a standstill in your care. Even if you really like so-and-so, you need to actually feel like they’re helping you and things can get worse if this stops.

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

Chronic Migraine, Community, Reader Stories

Migraine Stories: From Chronic Migraine to Advocate & Fundraiser

Kerrie Smyres

migraine-fundraiserKatie has turned living with chronic migraine into a chance to help others and raise awareness about the disease. In addition to starting a support group for people with migraine called Migraine IDAHO, she is hosting the second annual Haturday for Heads fundraiser. Haturday for Heads has already raised $740 for the Migraine Research Foundation through online hat sales (sorry, they’re sold out!) and will be hosting an in-person event in Boise this Saturday, April 23. The Boise event will be from 2 to 4 p.m. at BBQ4Life, which will donate a portion of food sales to migraine research. You can also enter to win some great raffle prizes at the event. If you can’t attend in person, Katie encourages you to share your story on social media (tagged #haturdayforheads2016) or donate to Haturday for Heads on CrowdRise.

Get to know Katie and learn more about Migraine IDAHO and Haturday for Heads in this interview she kindly did with me:

Katie’s migraine story

I remember my head hurting as a young kid, especially in the summer time and having to lay on the couch. But I don’t think I had true migraines until my teen years. Around 15 then got to a point that I decided I need to see someone. We (my parents and I) started with the eye doctor to rule out any vision issues, when my vision ended up at 20/20 we moved on to a neurologist. When I had my fist visit he asked me a question I will never forget, “When was the last time I did not have a headache?” I could not answer, I thought about it and could not remember the last day that I did not have some form of head pain.

He strapped the diagnosis of chronic daily headache with migraines on me and decided that we were going to shock the daily headaches into stopping. I spent a day at a outpatient facility having some drugs pumped into me with an IV. I do not remember what it was all I know is it made me nauseous and I vomited multiple times. It was such a terrible experience that when he asked me if it worked and my headache had stopped, I lied and said yes so that I would not have to do it again. From there over the years I tried different things, other neurologist with preventives, chiropractors, digestive health. Nothing has yet to work well.

I have had a few years here and there where my migraines and daily headache have been better and I managed without any medication. Now I have my baseline headache everyday, around a 2-4, with migraines anywhere from 3-7 days a week. I don’t get an aura, I do have sensitivity to light and noise. Most of the time my migraine is on both sides, but can be more intense on the right. I rarely get nausea, which is good because the few times I have, I ended up in the ER because the nausea was uncontrollable. Fatigue is also a big symptom for me.

What Katie wishes people understood about migraine

I wish that people understood that I did not choose this. That I am not lazy, that my house is messy sometimes because I am exhausted and it hurts to bad to move. I want people to realize that this is a disease and there is not a cure, I may find something that provides relief but I still have this disease/illness, it will not magically go away.

The motto that helps Katie cope with chronic migraine

One day at a time.

About Migraine IDAHO

Migraine IDAHO is a community, a group for sufferers to have support. A group to help raise awareness and provide education and resources on migraines. Right now there is a closed support group on Facebook. It started after I had found some national migraine support groups on Facebook. I always had felt like I was alone with migraine growing up. I felt like I was the only person who was experiencing this kind of pain. Once I got on Facebook and found others like me, it really helped learn more about my disease and accept it. So I wanted to create in Idaho a group that I never had, a place where that young girl, and all sufferers, were not alone. Eventually I hope the Migraine IDAHO can hold in-person support groups, do educational talks at school and businesses about migraine, and continue to raise funds for research.

About Haturday for Heads

Haturday for Heads is a migraine awareness and fundraising event. All the proceeds go to the Migraine Research Foundation. This year there was an online design contest for the hat design, hats that could be purchased on worn on April 23, and then an in person event at BBQ4Life. [Hat sales are over for this year, but follow Migraine IDAHO on Facebook so you can be sure to get one next year.]

For the last 4 or 5 years I have wanted to do some sort of event for that would help raise awareness and educate about migraines, raise funds for research, and strength the migraine community. I had communicated a few times with some of the folks at Miles for Migraine about getting a race here in Boise. The manpower needed and the logistics have not lined up yet, and I say yet because having a Miles for Migraine race here in Boise is still a goal for Migraine IDAHO. Anyways, I had the desire and want to do a event, I just needed a catalyst to make it happen.

I was back in school at Boise State University to finish up my bachelor’s degree and one of the last classes I took was Communication in a Small Group. We were put into small groups and our semester project was to do something that make a change in the community. When I heard what our assignment was, I instantly knew that this would be my opportunity to do an migraine event. It took some persuasion on my part, but I was able to get my group on board with the idea.

We only had two months to organize and our event in class so we keep it pretty simple. We had it at BBQ4Life and had a few silent auction items and a few of us made silly hats to wear. We raised around $200, which was great. After the event last year I had someone tell me that they were asked, “When are we going to have a Haturday for Heads in our city?” That got me thinking that I needed to make this a national if not worldwide event, and why not, migraines are all around the world. So I thought a good way to be able to include people everywhere would be to have a hat designed just for Haturday for Heads and people could wear it the day of the event and post pictures online. This way anyone anywhere, even the ones of us in bed with a migraine could participate.

I have already surpassed a lot of my goals for this year. We had some great designs submitted that were voted on. And then when the hat was available to purchase, we ended up selling 42 and raised $720. We still have the in person event at BBQ4Life, if would be great if we raised some more money, but for me the big goal there is to have awareness in the local community increased.

I have big dreams and goals for future years. This year we had people across the nation purchase a hat, next year I would love to see people internationally involved. In following years I would like to see some in person events happen in other cities. Also, if the Haturday hashtag became one of the top used tags, that would be awesome!

How you can participate even if you don’t live in Boise

Anyone who purchased a hat can post pics the day of the event with #haturdayforheads2016 to all social media sites. If you didn’t get a hat purchased in time, you can donate to the Haturday for Heads CrowdRise page. Also, if people comment, share, and post about Haturday for Heads they can be a part of it and help spread awareness. It would be great to see the internet explode with #haturdayforheads2016. Be it post in their hats, or just post about themselves and how migraine has affected them.

I am hoping I can do a live video post on Facebook at BBQ4Life, if so it will be on the event page.