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Lori

 

As a migraine sufferer, I cannot explain the pain to those who haven’t experienced a full-on migraine attack. As from my own experience, it feels like your head is tightened in a vice, very uncomfortable yes.

I was diagnosed with migraines a few years ago. My first migraine started off with frequent little nosebleeds. I couldn’t help but think this really isn’t normal. 

I hoped the pain would go away on its own if I took a paracetamol or two. I went to the doctors and they prescribed Zolmitriptan. Whenever I got a normal headache I was told to take one of these so it wouldn’t become a full-on migraine. It worked for a few weeks but they soon started to wear off and now I’m back to having migraines almost every day.

Early hours in the morning I was starting to feel very sick, sometimes often would throw up, I couldn’t cope with the pain anymore. I phoned the out of hours doctors at the hospital, they told me to book an appointment for an X-ray and scan on my head. I made the appointment and a few weeks later was booked in for my head scan. The day came and I thought I would finally have an answer as to why I’m getting all these bad pains in and all around my head. The scan results came back, nothing. They couldn’t find anything as to what was causing my permanent strong headaches. Yes, of course, they agreed it was a migraine, but they didn’t seem even remotely bothered. 

The number of times I’ve been told to take paracetamol and sit in a dark room like I haven’t tried that. People get them mixed up with headaches, no. A headache is not a migraine. With a migraine, the pain pressure builds up stronger and stronger until it almost feels like your head is going to explode. Headaches can be there for a few hours and then go away, but a migraine lingers forever. 

My migraines attacks sometimes cause my vision to go awol, which is called an aura migraine. My main triggers are bright lights, flashing lights and loud noises. It’s not just a throbbing pain in the head, it also hurts right behind the eye sockets. I am currently suffering from a migraine as I write this. I am drinking cups of tea and I know people would jump up on that saying ‘caffeine is bad for your migraines” yeah yeah but I want a cup of tea.

I would like to continue to spread awareness to those who do not completely understand what it’s like to live with a migraine. Also, to share my experience and help others with the same condition. I would not wish this on my worst enemy.

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Leonilda

My name is Leonilda, I’m almost 45 years old. I live in Brazil. My headaches started when I was 13 years old and I got my period. I have suffered for 30 years with migraine pain. The intensity of my migraines worsened after I turned 20. The pain can be so intense that I need to go to the hospital. The years go by and I try to live with this pain. I’ve done several tests: ultrasound, tomography and seen many specialists, but no results. Nowadays, I have a headache every day … And I’m not doing any treatment right now because I’m out of health insurance, I feel very sad. I hope people like me have more chances. Thankful, Leonida Gregório

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Hormones and Headache

My headache and migraine history started with documented medical concerns at just 5 years of age. I first started at 5 years old not being able to handle heat, and excessive sounds. Then around 11 years old, I started getting migraines every day.  The pain was unbearable.  Concerns from family members led to me getting CAT scans and EKGs. There was a concern that I had a tumor or cancer due to family history, but t was none of those issues. Things worsened in college and I started getting migraines three to five days out the week. My migraines were attributed to hormones levels, and I was informed I had Premenstrual Dysphoric Disorder (PMMD), and a cyst growing on my thyroid. I knew it was more to this issue because I still did not have normal or conventional levels of energy, emotions, etc. Fast forward, at 21 years old I was told it was difficult to have children due to an ectopic pregnancy. It was not until I conceived my first son at 27 years old that I was diagnosed with Polycystic Ovary Syndrome (PCOS), that my life began to change for the better.

I have been verbally telling my story to so many women in my line of work because all cultures have been affected by the same symptoms. Hormonal balancing and fluctuation is very real and can be scary when faced alone and without the right medical team. I now better understand the correlation between being a woman of color, hormones, food consumption, and migraine.

A. Wilkinson

(I love the articles posted here)

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Jonathan’s Story

I’ve had migraines for the majority of my life. However, about once every couple of months I get these extremely intense migraines. I can’t compare the level of pain from them to anything else I have felt before and it is such a helpless feeling. They’re at the point where they actually hurt and throb much worse when I lay down, but if I stay standing or sit I get very dizzy and weak. Typically I throw up a couple of times and release my bowels, and eventually just pass out from the pain and exhaustion. I understand that going to the ER or urgent care could help, but I’m never in condition to drive when these occur and wouldn’t want to call an ambulance. They have always gone away by morning, aside from the usual migraine ‘hangover.’ I have found they happen more commonly on days when I go out running and after I eat a light dinner later that evening, but that’s not always the case. They start getting light but after an hour or so they abruptly turn into a hurricane in the front of my skull. I am seeking if anybody has any thoughts/ recommendations, or have similar experiences.

Thank you!

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Learning How To Live Again -Teri Hooper

In my early 40s, I started to get a couple of migraines a month.  After having 2-5 migraine days a month for a year, I went to my doctor who referred me to a neurologist.  Every year after that, the number of migraines increased until I was having 20-25 days of migraines a month.  As a teacher of first graders, it became impossible to continue teaching with that many days of pain.  I ended up on permanent disability by the time I was 50.  That started my 15-year journey of consulting with several headache specialists and trying many medications in an attempt to find something that worked.

During most of my 50s, I was disabled.  I tried a variety of medications and medication combinations.  Every time I titrated off one medication and titrated onto another medication, I would gain 5-10 pounds, gaining a total of 100 pounds within 5 years. Yet nothing seemed to be making a dent in the number of migraine days I was having.  Rescue medications did not do anything except make me feel like I was having an out of body experience.  Besides having constant migraine pain, light and noise sensitivity, and nausea, I was having many side effects of the medications I was using in an attempt to lessen the number of migraines.  

The first 7 years of permanent disability were a blur.  I seldom did anything due to the constant migraine pain. I stopped planning activities with friends and family because I was forced to cancel the majority of the time.  My sleep was choppy and interrupted due to pain.  To sum it up, I became bedridden in the dark cave of my bedroom.

Then I changed neurologists (for the 4th time) and my new neurologist suggested Botox.  She got the authorization approved by insurance and I had my first round of injections.  It was a miracle!  The number of days of migraine went from 20-25 to 2-3 a month.  I was elated!  The days I did have a migraine, the intensity was more like a mild headache and it was usually alleviated with 800 mg of ibuprofen.  I felt liberated.

I continue to get Botox injections every three months to this day.  Since getting my migraines under control, I was able to be a caregiver for my husband and son who both had Huntington’s Disease for the last 3 years of their lives when they needed me the most.  They passed away in 2017 but I am grateful I could take care of them.  Had I had migraines as I had before Botox, I would not have been able to do that. 

I now am officially retired and learning how to live again.  I have lost 60 pounds, exercise regularly, and have reunited with many friends.  I have another son with Huntington’s Disease who will need me in the future but right now he has not started having any significant symptoms.  I’m living the life I lost in my 40s and 50s.

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Heads UP – Episode 15: Migraine and Depression

Dr. Lindsay Weitzel interviews the Migraine Diva and blogger extraordinaire, Jaime Sanders, about winning in life despite having migraine and depression.

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Kat Harrison

When I was 15, I developed a wicked ear infection. After rounds of intervention and antibiotics (but no relief), my family and I decided to move forward with an exploratory surgery. Little did we know that would be the last day of my old “normal”.

In surgery, my doctor discovered a deadly bacterial infection that had started eating away at my skull and seeping into places it shouldn’t. A PICC line was inserted for my prescribed post-op treatment of IV antibiotics.

The following eight weeks are a bit of a blur. While other HS freshman were concerned about who they were taking to homecoming, my house was littered with biohazard containers and a home nurse drew my blood once a week at the kitchen table. Every eight hours, my parents would flush my PICC line with a syringe of saline and hook me up to an “antibiotic bomb”. But about six weeks into treatment, I started facing a myriad of odd symptoms: I would run into vending machines, fall down stairs, and was unable to focus my vision on a singular object. I was dizzy 24/7…but why?

Fast forward to a month (and umpteen diagnostic tests) later, and I was diagnosed as a vestibular wipe-out. The antibiotic had wiped away my entire balance system, an irreversible and devastating side effect that I knew very little of. I had to relearn how to walk, how to read, how to write in a straight line, and how to cut vegetables (still working on the last one). My vision has bounced every single second since.

As a result of this trauma, I’ve also developed chronic, daily migraine (I’ve had one almost every day since I was 15) and have endured a total of 13 surgeries on my ears/skull. I’ve been on over 100 medication combinations (both abortive and preventative), have tried various nerve blocks with mixed results, inpatient and infusion programs, acupuncture, elimination diets, supplements, cranial massages, aromatherapy…you name it. But as it turns out, no amount of optimism or creativity will grant me much relief as my particular brand of head pain is caused by my lack of a balance system. Bouncing vision causes constant throbbing. Some days are better than others, and I’ve mostly adapted to this life of constant pain.

I’ve learned a lot of lessons along the way but the biggest one is this: a diagnosis doesn’t mean your life is over. It just means you have to find a new way to sail. The waters are always choppy, but if you can hold on, the sunset sure is worth it.

My life isn’t easy, but it’s the only one I’ll have a chance to live. So, amidst the relentless throbbing and ceaseless nausea, I’ll keep telling my story to anyone that needs to hear it.

In case that’s you, I hope you know that you’re not alone. You are strong, you are worthy, you are enough. I see you fighting. Just keep going.

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My Migraine Story

I first began experiencing migraine attacks when I was 8 years old. Today, at age 27, I remember my first migraine attack clear as day. I was in grade school and I just could not describe the extent of the head pain I was experiencing. The school nurse proceeded to take my temperature and when she discovered I did not have a fever, she called my mom and I went home for the day. I remember feeling so grateful, because there was no way I would have survived the remainder of the school day. Little did I know that my migraine journey had just begun and I would suffer with chronic migraine for nearly two more decades of my life, and face debilitation as a result in my day-to-day life.

Migraine disease has taken so much away from my quality of life. For example, living with migraine has taken away the pleasure of spending time with friends and family, attending important events, and making it inevitable to have to deal with mood swings and depression. It saddens me that I, and millions of other individuals do not have access to the treatments of today’s rapidly-advancing scientific-based society certainly has the potential to provide. The most important benefit of a better treatment would be to increase my functional ability to perform daily tasks, thereby improving my quality of life.

Due to migraine, I am unable to always keep plans with friends and family and fully commit to long-term goals, such as my educational pursuits. I oftentimes feel guilty when I cannot keep plans that I have made with friends or family members due to a sudden migraine attack. The need to cancel plans or being unable to attend an important event or milestone makes me feel defeated. As a result of missing out on so many fun and cherished events, I often ask myself, “How would life be different if I was not plagued by this disease?”I have also had to restart graduate school twice, change my major and school, and alter the format of my in-person graduate program to an online program, as a means to accommodate for my medical needs as a person with migraine.

As a 20-something-year-old, living with migraine made my college years a challenge at West Chester University. Completing weekly assignments, studying, and maintaining a GPA that would prove me to be a good candidate for graduate school, all on top of the social pressures associated with being in college, was challenging. On a figurative level, in college I sometimes felt as though I was always walking on an emotional tightrope, which, if struck by a migraine attack, would start to become weaker until it could no longer support me. Luckily for me, I was able to receive academic and medical accommodations which allowed me to test with extended time (the typical testing time plus 100%) and a distraction-free environment. In addition, my neurologist suggested that I should not test when I was experiencing a migraine attack. My professors were sympathetic of my migraine disorder and made every effort to accommodate me so that I could be a successful undergraduate student.

Unlike my undergraduate experience with receiving academic and medical accommodations to be successful, graduate school was much more difficult. I had to drop out of a rigorous speech-language pathology graduate program due to my migraine disorder making it almost impossible for me to keep up with the heavy clinical and academic workload. Although I was disappointed and frustrated in this decision, I realize that my health and overall well-being comes first.

Now, I am much happier, and will be pursuing my master’s of science in human nutrition, another field that I am very passionate about. The best part about this program, for me as a person living with migraine, is that this degree is offered 100 percent online, so that I can work on it with a flexible schedule and at my own pace. My journey has been challenging and circuitous, resulting in a jump in careers; however, I did not allow my migraine disorder to discourage me or allow me to give up on reaching my goals in life.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”  -Theodore Roosevelt

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My Experience with Migraine

As I was prompted by my mother to write about my experience with migraine, I am suffering from one currently. I am chugging water with drips of ginger essential oil and peppermint to curb the severe nausea but I will ultimately have to take my rescue medication, diclofenac and Compazine to settle this episode. I am attempting to study for a final exam I have tomorrow. I am a 22-year-old sophomore at the George Washington University majoring in political science. 22 sounds a bit old to be a sophomore in undergraduate school? Indeed it is as most of my classmates and peers are turning 20 as I turned 22 this past Thursday.

 

I was forced to take a gap year in between high school and college due to the severity of migraine symptoms. I was diagnosed at 16 by my neurologist with New Daily Persistent Headache, NDPH. They were ultimately so debilitating, I had to withdraw from my formal high school and was home- bound tutored, taking the minimum requirement of courses to pass sophomore year.

 

I had tried everything available to me to subside the severe head pain along with the body symptoms I suffered from. I tried botox injections, nerve blocks, DHE infused visits to the Children’s Hospital of Philadelphia along with countless prescription drugs cocktails. I had no relief for an entire year from this nightmare. I was so desperate for this head and associated body pain and nausea to subside, I consulted a more holistic route such as diet eliminations, acupuncture, biofeedback, psychotherapy, and herbal supplements.

 

My junior year, I was able to attend my formal private high school for about half of the year then was severely debilitated again due to migraine I had tutors come to my house again since I was home bound. While my friends were stressing about AP American US History I was just completing the minimum requirement of courses to pass high school. Fast forward to my senior year, my private formal high school is unwilling to accommodate my special needs and I was forced to enroll in Homeschooling.

 

Although I had to leave my friends and formal high school setting, I followed an unorthodox route to get my diploma. I was able to take college level courses as a university near my house to receive high school and college credit which counted towards my senior year high school diploma. The flexibility of a college schedule afforded me more time to receive my special treatments for migraine and time to relax, as opposed to being stuck at school from 8-3. I was also able to choose the class times which revolved around the severity of my headaches at different times of the day, morning being the worst.

 

Although I did not walk cap and gown with my friends from my formal high school, this alternative was a better choice for my special circumstance. Since I was only physically able to meet minimum requirement of material for my classes, I took a gap year from high school to college as my migraine headaches were unpredictable and I needed to complete more credits to graduate from high school.

 

During this time, I was involved in an AMGEN CGRP study at the Jefferson University Hospital Headache Center. I had been living and coping with the symptoms of migraine for 4 years and had more control over my migraine but believe having the privilege to receive this drug from the study afforded me the ability to attend a conventional university in the fall.

 

Today, I definitely experience less frequent migraine headaches and associated symptoms, but I am not completely migraine free. However, I continue to spread awareness to faculty and professors who do not understand what it is like to live with migraine while simultaneously performing at the college level.

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Christine

I have had Migraines since I was 8.  I have done a lot of research and have found the it helps to avoid MSG, increase Magnesium intake and take Feverfew daily.  I have found by doing the Feverfew, when I do have an attack, I only get the aura and a brain fuze.  When I don’t take my Feverfew I have full blown migraine which can take me down for days.  I am all for prevention, not a bandaid to mask the symptoms.

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