Educating myself on migraines has been a process. You hear different things from different doctors, which is why advocating and educating yourself is crucial.
Here's what I've gathered thus far from my time researching:
#1 – Migraine Patients Understand Pain
-Migraine patients are abnormally empathetic individuals; they internalize stress in their environment and are overly sympathetic to others who appear to be under stress or upset. We are highly in tune and sensitive to our environments, including weather, odor, stress, light, foods, etc. Because of this, our nervous systems can become over stimulated.
#2 – Migraine Auras Are Unique for Everyone
-It may seem odd, but odor auras are very common; I too suffer from these, usually from pet urine. I do not get visual auras with my migraines, but this is also a common symptom. I do have serious sensitivity to light and movement and am often nauseated by any stimulus.
#3- If You’re Hypermobile (double jointed), You Might Be More Prone to Migraines
-I've been told that individuals who are considered to be "double jointed" or hypermobile, (which I am in almost every joint), are more prone to migraines. There is no explanation for why this is as of now.
#4 – Migraines are Genetic, but Intensity Varies
-Migraines are genetic. My mom still gets migraines and is treated for them, but lives a relatively unaffected life (so there's hope!). My grandma and great grandma had migraines for a period of their lives. My little sister shows early symptoms of migraines as do a few of my cousins. No one seems to have them as severely or debilitating as I do. Migraines, in any form, are a true disruption to quality of life. Raising awareness has opened my eyes to how many individuals suffer silently. It can be reassuring to meet others with your condition and reaffirm you are not alone in this! For instance, it really eased my mind to meet a fellow patient that was overusing her medications the same way I did. We both have had to use up to seven high potency injections in 24 hours during very strong episodes. After talking more with her and then with Dr. Saper, the founder of MHNI (my current physician), I was relieved to find out that it is not my fault; this often happens to patients when their doctors are out of treatment options, but it can be repaired, and again that it is not my fault. Both of them understood the survival mentality of getting through each day at a time during bad cycles when your thought process changes as your brain checks into the fight or flight response.
“When we feel threatened, our bodies go on high alert, preparing it to ward off the adversity whatever or whoever that may be. Our bodies undergo physical and emotional changes that affect how we feel, respond and react. For example: when the body endures a prolonged period of pain, the sympathetic nerves go on high alert triggering the onset of symptoms such as nausea, vomiting and diarrhea. Once the sympathetic system is on guard, other systems in the body begin to malfunction such as the body’s ability to digest food correctly – it delays the contents in the stomach from being emptied into the small intestines, making it difficult for medications to be absorbed” (Fight of Flight)
#5 – Everyone’s Migraine Experience is Unique
-Migraines are unique to every individual; every Migraineur experiences migraines differently and responds differently to treatments and drugs. What works for me may not work for another patient.
#6 – There is No Magical Migraine Drug
-Currently there are no drugs on the market for the soul purpose of preventing migraines. Other drugs such as anti-hypertensives, anti-depressants/anxiety, anti-consultants, opiates, anti -inflammatory, and vasoconstrictors are used at varying dosages to help prevent migraines.
Since there is nothing specifically created for migraine prevention, treatment options are limited and very individualized. I typically respond the most to anticonvulsant medications but have had to switch several times due to the severe side effects and lack of improvement.
#7 – Side Effects of Treatments Can Be Rough
-The side effects that come with all these medications add to the struggle and complicate migraines further. I lost a lot of hair and gained a lot of weight on my last trial of anticonvulsants. In the past, I've lost a lot of weight, gained weight, lost feeling in my limbs, or gotten a numb tingly feeling throughout my limbs, and had memory problems such as aphasia, where you forget words/thoughts in the middle of talking. While I would opt to be bald and fat if it meant no migraines, the side effects usually come along as the medication’s effectiveness wears off.
#8 – Sick Children May be More Prone to Migraines Later On
-Children who were commonly sick with strep throat, ear infections, etc. may be prone to migraines and other chronic conditions as the typical treatment of these illnesses, antibiotics, can deplete the good bacteria in the gut, making it more difficult to fight off infections.
#9 – Migraines are “Comorbid”
-Migraines are co-morbid with many other conditions. For me, it's allergies, chronic sinusitis, TMJ, occipital neuralgia, and neurologica. There is a multitude of other conditions that are linked to migraines.
#10 – It’s Always More Than “Just a Headache”
-Migraines are more common than you might think. By openly sharing my condition I’ve come across so many people who also suffer or know someone who suffers from migraines. There are different types of migraines with different diagnostic requirements for each. Two types of chronic and episodic are characterized by how frequently they occur. Chronic migraines occur more than 15 times a month, and episodic migraines occur less than 15 times a month.
According to The Migraine Research Foundation:
-Over 12% of the population, including children suffer from migraines.
-Nearly 1 in 4 U.S. households have a migraineur.
-Migraines are the 8th most debilitating illness in the world.
-About 14 million people experience chronic daily headache.
-American employers lose more than $13 billion each year as a result of 113 million lost workdays due to migraines.
#11 – You and Your Doctors are a Team
-Doctors are people too; they don’t always know everything, especially when it comes to migraines. Ultimately, it is up to you as a patient to advocate for yourself, research all options, and educate yourself. Double check your prescription interactions, as even doctors make mistakes. Educate yourself so the care you're receiving is the best it can be. Ask your doctors questions, look things up, and come in with a list of questions even if you feel annoying--it's their job to listen.
-“There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine”. Joel R. Saper, MD, Chair, MRF Medical Advisory Board
"Fight Or Flight | Migraine Treatment Group." Migraine Treatment Group Fight Or Flight Comments. N.p., n.d. Web. 05 Apr. 2016.
"Migraine Research Foundation -- Fact Sheet." Migraine Research Foundation -- Fact Sheet. Migraine Research Foundation, Apr. 2016. Web. 05 Apr. 2016.