Since June is Migraine Awareness month, my hope is to shed more light on this disease not just for June but all year around. For me, it is important to be a committed advocate in helping other migraine warriors so they don't feel alone walking their journeys. I know first hand that belonging to several migraine communities provides me a sense of support and comfort. We all share a common disease but our treatments vary from one person to the next, so it is helpful to share our stories with one another and voice our frustrations, disappointments, and successes.
Fortunately, in the past few years, researchers have been able to produce and market new drugs especially targeted for migraine which are now in use by
patients. This is especially exciting news because many of the standard medications already approved for years are not exactly targeted for migraine. They are really needed for other conditions. We, migraineurs, get the left-over-hope-it-works medications. This is so frustrating.
A few examples of the class of new medication is called the CGRP inhibitors which are used to prevent and treat migraine pain. This medication blocks a protein which may cause inflammation and pain in the nervous system of chronic migraineurs. Currently, there are four medications which are now in use, and they are: Ajovy, Ubrelvy, Aimovig, and Emgality.
I personally take Aimovig and have been on it nearly two years. It is a self injection once a month. I can happily report that it dials down my pain and other symptoms while reducing the overall number of serious attacks a month. Bottom line---I function better.
The injection is easy. I do experience significant side effects along with my conglomeration of other side effects from my other medications, but I am getting used to managing those symptoms as best I can. There is always a sacrifice and a trade off somewhere.
In addition to traditional medications, there are also a few noninvasive neuromodulation devices that are now approved for use that are safe with no side effects really.
These devices are advanced medical tools that can enhance the activity of the nervous system which, as research has discovered, may be effective in reducing migraine attacks as well as cluster headaches. There are four currently in use which patients can decide with their doctor which ones to try.
The devices are:gammaCore/electrocore, sTMSMini/eNeura,Cefaly, and Nerivio Migra/Theranica.
I personally tried the Cefaly several years ago and did not find it effective for me. That device I wore on my forehead nightly as to prevent attacks. I felt like a space alien. The things we do for relief! I currently am giving the Nerivio device a try but am not too impressed thus far. The jury is still out for me.
My special toolkit involves: daily preventive medications taken all throughout the day to reduce the frequency and severity of attacks; rescue meds that I take at the onset of an attack to try and abort it from taking me to the point of no return;
vitamins and supplements like Vitamin B2, magnesium, calcium, and Vitamin D. I have tried other natural supplements over the years and those alone were not helpful one bit.
I go nowhere without lots of water, snacks, sunglasses, Vicks for blocking annoying smells and rubbing it on my temples to ease pain. Peppermint oil is soothing, and I put it on my wrists to squash smells. It is so refreshing. Peppermint is my new perfume. LOL. Earplugs come in handy in the most unexpected places. Baseball caps with good brims are a must all year around. My big sunglasses are a must, and I freak out if I can't find them or forget them accidentally. Last but not least, I wear lots of purple since it is the color of migraine awareness. It wouldn't be June if I did not streak my hair purple. It is a great conversation starter for awareness. Glad it happens to be my favorite color!
I share these details with you, friends, to be transparent about the complicated nature of this disease. It is so much more than a headache. It affects so many parts of the nervous system. Vertigo, slurred speech, foggy brain, auras, extreme exhaustion, mood changes, photophobia, nausea, vomiting, and so much more.
Unfortunately, children are prone to migraine and headache disorders as well as adults and often do not get a proper diagnosis for years.
According to the American Migraine Foundation, "Out of the 37 million Americans living with migraine, no two patients are exactly alike." This is why standard treatment does not work. Each individual needs a tailored treatment plan just for them. This is not an easy task. This is why it is so important to advocate for ourselves as well as others who may be unable to do so because they are too disabled and lost in a sea of confusion and crashing waves. I know because I was there years ago. I barely thought I was going to survive the many harsh days of dreadful pain and depression. It was dark season for me. This is why I desire to help anyone I can by providing information and direction. There is HOPE. Always.
If you have stuck with me reading my rather long blog, I thank you. I am fully aware there are pressing issues in the spotlight today with COVID 19 and raising awareness for social justice. I respect these issues immensely. However, they do not diminish our struggles for figuring out a better way to lead a healthier life with chronic migraine.
If you or someone you know suffers with a headache or migraine disorder, please reach out to them and offer help. Maybe even a ride to the doctor office or dropping off a meal or just lending a listening ear could do wonders. The biggest thing NOT to do is offer some crazy "cure all" that Aunt Susie Q tried and she is now cured. UGH. There is no cure. Only management for now. Much more funding for research is needed. According to the American Migraine Foundation, "Fewer than 5% of those living with chronic migraine have been seen by a healthcare provider, received an accurate diagnosis and obtained appropriate care. Migraine is under-recognized, under-diagnosed, and under-treated."
On June 21, the Summer solstice, the migraine community is asking everyone to wear their dark shades in solidarity with the migraine world. This is to promote awareness of this disease that affects over 1 billion people worldwide. Please show the world that you care and support our campaign by posting a photo to social media with the #ShadesForMigraine. This means a lot. Thank you!
May you experience a safe and joyful Summer.
