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Nicole’s Journey With Spontaneous Intracranial Hypotension

On a Sunday morning, I woke up with a dull but prominent headache. It was unlike anything I’d ever felt before. It was accompanied by moderate neck pain. I took Ibuprofen and figured that would do the trick, however, I was surprised when the pain never subsided. As the day went on, the headache got increasingly worse to the point where I could only lay down to get relief and I was severely bothered by light and sound. After four days of this, I went to the ER where they treated me for a migraine. When I got home from the ER, the next morning the headache was still there. I was baffled, frustrated, and in a lot of pain.

I started feeling like this was my life now, every day a headache. After a few more days, I developed double-vision which ultimately brought me back to the ER.  I had 2 MRIs, a CT scan, and eventually a spinal tap to rule out the more serious diseases of the nervous system. The MRI showed inflammation of the meninges and pituitary gland. They kept me at the hospital and I got a chance to meet with the neurologist. He wanted to do a spinal tap to rule out more serious diseases like MS and meningitis but he was truly baffled at my symptoms, as I was able to pass all the tests and I wasn’t running a fever. It was the nature of my headache that finally brought him to the possibility of what he called Spontaneous Intracranial Hypotension (SIH) or in other words a Cerebral Spinal Leak. The main symptom of this issue is a postural or orthostatic headache – a headache that gets worse upon being upright but improves or goes away completely when laying down. In this situation basically, your brain is being deprived of the cushioning that CSF provides and sags, wreaking all kinds of havoc on the surrounding nerves. It’s also the reason why painkillers aren’t effective.

This kind of headache gets misdiagnosed and mistreated often and I just want to help bring awareness to the subject as many doctors and neurologists are unaware of this condition. I was lucky as my neurologist had seen one case before in his 29-year career and I was able to get the correct diagnosis and expedite treatment, but many are not as lucky as I was. The pain from this type of headache is debilitating, you can’t live your life lying down all the time. I want people to know there are treatment options that work for this kind of headache. I think it’s important for doctors and neurologists to consider a CSF leak when a patient exhibits these kinds of symptoms regarding a headache.

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Rachel’s Story of Living with Chronic Migraine

I am 25 years old and live with chronic migraine due to a car accident seven years ago. Since the age of 18, I have had daily migraines that range from 3 to 5 on the pain scale. I have been to three neurologists, countless physical therapists, chiropractors, and dietitians. I have tried alternative therapies like dry needling, massage therapy, and acupuncture, but there has been no relief.

I’ve been on all medications under the rainbow and tried Botox without success. Migraines are on my mother’s side of the family. One of my aunts had success treating her migraines with Botox, but another aunt was not as lucky. My mother attributed her migraines to the late shift she worked. My grandpa had migraines, but he does not get them now due to a blood pressure medication he takes.

I believe that I will always have to live in pain for the rest of my life. I feel like I have tried everything.

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Jane Schapiro

The poem “Migraine” is written by Jane Schapiro and included in her most recent book of poetry, Warbler. Jane is the author of three books of poetry, Tapping This Stone (Winner of the Washington Writers’ Publishing House Award, 1995), Let The Wind Push Us Across (Antrim House, 2017), and Warbler (Kelsay Books,2020). Jane Schapiro is a writer living in Annandale, VA. 
The painting is by the artist Rita Blitt and serves as the cover art of Warbler

“What do we know beyond the rapture and the dread?” Stanley Kunitz

Migraine by Jane Schapiro

I

Pain, please I beg of you.
Let me sleep, let darkness rock me out of this world.
Take what you like, just go away.

What am I supposed to learn, what tidbit of truth
might I find circling this toilet bowl?
Please Pain, I beg of you.

Beyond the threshold, children’s voices:
Can we come in? What should we eat? Everyone,
can you go away?

Outside my room, questions pound
against my door. Do not disturb,
I beg of you.

How readily I betray,
pray to that Golden Calf:
Pain, take what you like.

Would I bind my first-born,
lead her to the altar?
Pain, please, I beg of you,
take what you like just go away.

II.

There must be a blessing for when the veil lifts,
reveals the world as a luminous bride,
a few words we can whisper upon our return
when we kneel and kiss the Promised Land.
Anchored to the morning light, I sit,
mug of coffee, smell of toast,
the dog sleeping against my feet.
Ah, sweet life. Sweet, inviting life.

III
Down the street,
azaleas have bloomed.
A yard has exploded
in pinks and reds.
Neighbors gather.
Magnificent. Divine.
Nobody mentions the tangle of shrubs
that spawned such a glorious sight.

 

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Sean’s Hope for College Accommodations

I developed sudden onset post infectious headache after having viral meningitis. The headaches were so bad that I could not function for years.  Instead of graduating high school early with several years of college credits and even the opportunity to do prime research in the area of developmental biology and bacterial enterocolitis, I was bedridden for days that flowed into weeks and years.

I was treated with increasing doses of triptans and tricyclics with disabling side effects on their own. Several neurologists told me that all headaches are migraines so the treatment should work, and if it doesn’t, it is all in my head (which it is in a sense). I finally came across a neurologist who had a little more knowledge of autoimmune sterile headaches and was willing to change course allowing me some recovery on steroids, and newer approved biologics.  While there are European approved biologics that cross the blood-brain barrier, the use would be off-label in the US, and I cannot afford it, so I am only partially treated.

I finally looked at resuming my dreams of continuing my education. I applied to a university that offered a great diversity of courses and research. When school started I was still not well enough and had to defer for a year.  The first year provided to be a test of the ADA. My headaches are made worse by the same triggers as my asthma; pollution, poor health, and disturbed sleep. Everywhere I went on campus, the dorm, lecture halls, and administration buildings, I encountered someone smoking, using incense, or fragrances. I was exposed to significant VOCs such as fresh paint, pulling diesel exhaust fumes into the building, mold, etc. I had a roommate that even opened the windows during the fires to air out the medical marijuana he was using, which housing told me was his right.

Nowhere was safe, except the library, but how would I get to it? Where would I sleep, get food, get instruction? At the time, they did not allow remote attendance. I was so ill with life-threatening asthma, and in so much pain from severe headaches, I could not complete that semester.  The next semester, COVID happened – Yeah – There is a silver lining in the dark cloud of this terrible pandemic – I could attend remotely.

My home is unfortunately in one of the top 10 worst air quality cities in the country. Soot from fires, seasonal allergies, dust, and record heatwaves caused a concentrated attack on my wellbeing. No amount of HEPA filtration could keep the pollution out. Houses are meant to breathe. My medication was changed to trial a new type, which was less effective. I had not gone back onto the high dose steroid regimen again, and my headaches and asthma again took over my life.

Will I be able to attend remotely for most of my courses?  Will I be able to get a quick response when the air quality in the facility I need to be in is causing me to be sick? Will I be able to have flexible scheduling and perhaps complete my work independently? I hope so. I am looking at other universities’ student accommodations, and I am hoping my university will adopt some of them. Other universities and public institutions have great policies on fragrance, controlling smoking, allergens, and VOCs. I contacted some of the other institutions on how they implemented their clean air practices and shared the information with the university. The university has much better workplace accommodations for the same disabilities than it has student accommodations, so it is a start.

I am hoping to see more education and mitigation of poor air quality and the health effect on post-secondary education, housing, and the workplace in general. For now, I remain the veritable canary advocating for better practices while trying to get a recognized degree from a great institution.

 

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The Three Es of Migraine Advocacy by Ronetta Stokes

Advocacy is not just a word; it’s action. Taking action means you are standing up for something you truly believe in. Once you take that power you start a mission to support others through engagement, empowerment, and encouragement. I call it my 3 E’s of migraine advocacy.

Engagement is taking what you believe in and engaging others to believe in as well. When I started my migraine journey I felt alone, unprepared, and unaware. I began to step out of my comfort zone and speak up for myself. I found others on social media who were going through the same things I was. I started to engage myself in conversations with others. I was getting educated on migraines, the disease, diagnosis, and research.

Empowerment happened when I started to take on more initiatives on migraines. I empowered myself to learn more and more so I could advocate for myself and others. I began reading more books, listening to doctors on new medications, and joining more groups. I became aware that there is so much more to be done on migraine research, awareness, and advocacy.

Encouragement is when I started sharing with others the need for advocacy and awareness. I wanted to encourage others to step outside their comfort zone. As the saying goes, “reach one teach one”. I wanted to make a difference in someone’s life as this was done for me. By the encouragement I received, I was able to participate in Miles for Migraine events, speak with the mayor of my town. She proclaimed Chronic Migraine Awareness day in June of last year. I was also able to have a conversation with the president of the hospital and provide education on migraine disease. I also participated in Retreat Migraine. When I say amazing that’s an understatement. I learned so many valuable tools to take with me everywhere I go. I gained a new community of friends. I was telling everyone how to get involved. I had a voice and I wanted to be heard.

Advocacy can start anywhere, anytime, any means necessary as long as you do something. Take the time to find what you are passionate about and put it into action. One would be amazed at all the connections you will encounter.

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. –Maya Angelou

 

 

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Ronetta’s Migraine Journey

My migraine journey began when I was in high school. I would get occasional headaches. Nothing that I couldn’t handle without medication. Once high school ended I went on to college. I had a few more headaches; nothing major. I was able to work and attend classes on a regular basis. Once I became pregnant in 1996 with my daughter and the headaches stopped. I felt like myself again. I was laughing, joking, and smiling.

In 2002, I saw a neurologist and was started on headache preventative therapy.  In 2003, I became pregnant with my son and stopped all medications. Around 2005, the migraines started again, but they were more aggressive and intense. I was referred to a neurologist. The pain was 3-4 times a week and the location always varied. Sometimes in the frontal head, others occipital, or bitemporal. They were sharp, throbbing, achiness with maximum intensity. Accompanied with them would be nausea, dizziness, and sensitivity to light. The doctors attributed my migraines to a stressful job, moving into a new house, and returning to school.

For the onset of a migraine, I would take Excedrin Migraine which only slightly lessened the pain without stopping it.  My Topomax was increased. I had no appetite and lost 10 pounds. I was forcing myself to eat two meals a day. My dose was lower from 150mg to 100mg.  My doctor introduced Nortriptyline 50mg a day.  Migraines were winning as the doctor was increasing other meds into the mix. I had many scans, tests, etc. Everything was normal.

I was referred to another doctor who tried Botox; twice with no change. I was placed on another preventative and abortive plan. As the years went on the pain persisted. There were times I would just go to my room and lay down. I had to miss family events, birthdays, and work. This was no way to live my life or any life.

I was on every tricyclic and antidepressant medication used for migraines with no relief. I learned to deal with it. I was getting good at pretending I was ok, so I didn’t have to hear “oh, you have a headache again?”, or I get a look like here we go again she doesn’t feel good. I pushed through workdays and would come home and crash. I did this for years to no avail. Migraine disease had taken over my brain, but I was still pushing forward to be a mom, wife, student, and coworker the best I could.

I started seeing another neurologist in another town. When I walked into the office the lights were very dim. Not like my last doctor’s office music blaring, bright lights, and loud staff. This place felt like home. The staff was amazing, caring, and showed concern. I met my neurologist and felt she truly understood what was happening.

I went on Facebook and looked for others who were dealing with the same issues. I found so many support groups. The one that stood out the most was Chronic Migraine Awareness. Everyone was thoughtful, caring, and had been in my shoes. This group encouraged me to step out of my shell and speak up to end the migraine stigma. I fundraised for Miles for Migraine and it was exciting and I was so proud of myself for stepping up and doing something. Next, was National Migraine and Headache Awareness Month (MHAM). I spoke about MHAM with the CEO of my company, coworkers, and the mayor of my town. The mayor gave me a proclamation and declared June 20th Migraine and Headache Awareness Month, and that meant the world to me. I am able to show and tell others the truth about migraine and prove that it may be an invisible neurological disease but it’s real. There are real people living with it daily. I am not a migraine person. I am a person who has migraine disease.

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Rebecca is Turning Her Pain Into Art

I got my first migraine as a twelve-year-old following a day at an amusement park. Hot sun plus lack of water left me in paralyzing pain for most of the night. Ten years later, my migraines have gotten significantly worse and are triggered by what feels random. I cut out gluten, chocolate, dairy, and caffeine just to try to find the answer. So far, I continue to suffer. So, I turned my pain into art and created a makeup look based on what I think migraines look like.

Watch Rebecca’s video here.

What migraine disease looks like

A walk through of how I created the look and my story

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Miriam’s Story of Gratitude

When I was 18, my life changed forever. Out of nowhere, I started to get a pain in my head that I never felt before. Later, I found out this was called a migraine. I started my migraine journey when I began to see a neurologist in college. We exhausted all medication options and treatment options. I even underwent tests such as a spinal tap and MRIs.

My college experience was shaping out to be very different than most. I didn’t go out on weekends because I knew I had to get to bed by 10:30 or else I’d wake up with a migraine the next day. I would go to bed anxious every night that the next morning I would be sick with a headache. I couldn’t leave my house without my small bag of medicine that would hopefully get rid of my headache. I had my professors’ numbers saved in my phone so that I could text them when I wouldn’t be able to make class or rehearsal (I was a music major) because I was in bed.

Things took a turn for the worst when I started going to the emergency room for my migraines. 2016 was not a great year. I remember counting the number of times I went to the ER on both hands. In June of 2016, I worked at a sleepaway camp and that’s when I knew that I really needed help. I remember making a phone call to my parents saying that if we didn’t find a doctor to help me, I could not attend college in the Fall. My neurologist didn’t know how else to help me and I needed another opinion. In August 2016, my life changed again.

My uncle read about Dr. James Charles in the newspaper and sent my parents the article. I knew I had to get an appointment. The first time I met Dr. Charles, he sat with me for so long. He asked about my childhood – my complete migraine history. He listened to me. I felt heard. After diagnosing me with chronic migraine, I knew he was going to help me. He sent me to Holy Name Medical center for an infusion treatment and I began to live my life again. My migraines didn’t control my life.

Dr. Charles gave me my life back. Migraine disease can’t be cured – I know that. There have been many times since 2016 that I have gone through bad times with my migraines, but every time Dr. Charles and his incredible staff have been there to help me. Since August 2016, I have traveled to other countries, I graduated college with a music education degree, I started a master’s program, I have laughed, cried, and I have stayed up past 10:30 pm again.

I am so grateful to my wonderful parents. They have driven me numerous times to and from doctors’ appointments and I would not have gotten through my migraine journey without them. To my parents – thank you from the bottom of my heart for being there for me, for getting me ginger ale when I am sick with a headache, I love you. To Dr. Charles, I am forever thankful. You gave me my life back and taught me how to live with migraines without letting them control me. To everyone who lives with migraine disease – each migraine will pass and you will get out of the dark room. We need to share our stories so that you know there are other people out there who suffer from them too. You are not alone.

 

Please share your stories here

Read the stories of other people living with migraine disease and headache disorders here.

Discover helpful resources from the NHF’s Migraine University

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Ana Shares her Struggle

Hi, my name is Ana and I have lived with from migraine disease for the last 20 years. Actually, I just can’t remember when it all started.

I have been struggling to study because I get sick quite often, and even though I am a good student I just can’t deliver my homework on time.

I had psychological issues due to pain and frustration. I have felt very lonely as I am sure most people also feel.

About a year ago, my doctor told me I should share my story so maybe I’d reach someone else out there feeling the same about this condition, so recently I decided to do so, and now I have some virtual friends to talk to which is quite comforting.

So, if you are out there, feeling pain and loneliness and struggling to live, please, remember you are not alone and remember the battle is ours. Maybe most of the days we feel bad. But our good days are priceless!


Hola mi nombre es Ana y llevo con migraña más de 20 años. En realida no me acuerdo de cuándo empezaron.

He tenido problemas graves para estudiar, porque me pongo mal bastante a menudo y aunque soy buena estudiante simplemente no llego a entregar los trabajos a tiempo.

He tenido problemas psicológicos por el dolor y la frustración y me he sentido muy sola y estoy segura de que la mayoría de vosotros también.

Hace más o menos un año, mi neuróloga me comentó que tal vez debería compartir mi experiencia y que tal vez así contactaría con alguien más sintiéndose igual con esta enfermedad, así que hace poquito me he animado a hacerlo y ahora tengo algunos amigos virtuales con los que hablar, lo que es reconfortante…

Así que si me lees, y también sientes dolor y frustración y soledad, por favor, recuerda que no estás solo y que la batalla es nuestra. Quizás la mayoría de los días sean horribles, pero los buenos no tienen precio.

my migraine is.... mi migraña es...

how i feel abou my condition - cómo me siento con esta enferemdad

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Javier’s Story of Living With Chronic Migraine

I decided to share my migraine story as I am going through my worst one ever. I am 23 years old and have a B.S. degree in Kinesiology. I was diagnosed with chronic migraine at  8 years old. My migraine attacks come for about 3 months and the intensity increases every day. The migraine attacks usually vanish for 4 years, but always come back.

For some reason, last year in December I began the cycle and I was about 160 lbs. and finished my undergrad. I was extremely happy celebrating with friends and came home super late. At around 5 am, I woke up screaming with a migraine and I knew this was the beginning of the cycle. I took my meds and tried to power through my migraine cycle. This cycle was the worst one ever. I ended having to pause my 3 jobs a month later, lost 30 lbs, became depressed, dealt with anxiety, and ended up being hospitalized for a week.

This migraine left me extremely traumatized that I still shiver and cry from time to time. My neurologist said he had never seen anyone with migraines as bad as mine. I almost harmed myself but thankfully did not. My last migraine stopped maybe in March. It is now September and I am dealing with chronic headaches and I am starting to get scared again and have begun treatment which is why I am writing this.

I believe that if I made it out of the one I had this year, I can make it out of any of the next ones. I just hope I am not a burden to anyone in my life. Cheers to anyone going through it, With much love. Javier.

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