Have you ever had a really bad headache? Like really, really bad? I think everyone has at one time or another. Chances are, though, unless you have been diagnosed with migraines, what you felt was just the tip of the iceberg compared to what someone who suffers from chronic migraines endures. Or, maybe that’s why you’re reading this. You, too, live with migraines, and want to see you’re not alone in your feelings about it.
If you’ve read any of my other Living With posts, you may know why these are important to me. I want to give the readers an understanding of challenges others may have, or to give others who are  challenged by the same issue a little peace that they aren’t alone. It seems so simple, yet I bet if asked, most people will admit to judging somebody else without any first-hand knowledge of what that person is going through. I believe migraines are such a hugely misunderstood challenge. I think most people think they “get” what it feels like, because they’ve had bad headaches before. I thought I’d present to you one of those first-hand stories.
Here’s the deal. I personally had migraines long ago that were treated simply with prescription pain medication. I was lucky that they stopped after some time. I believe they were hormone related, but I’m no expert. I did get them again after the birth of each of my children (again making the hormone idea seem reasonable), even though it took me a couple of years after to realize that’s what they were. It had been so long (and I was so tired!),  it took hindsight for me to recognize the terrible symptoms. I wanted nothing more than to sit and stare at my babies, but it was so painful to have my eyes open. I wanted to sit in the dark and throw up. For about 2 weeks straight. I consider myself very lucky that my migraines have not continued. But, remembering how debilitating they are, I reached out to Sarah to see if she wanted to enlighten others about the realities of living with migraines. Here’s what she had to say:
I was asked to document my journey of living with migraines in hopes to shed some light on how a person who has chronic migraines is affected as well as those who love them. Before I begin, I have to apologize in advance for how long this blog ended up being. Speaking of long, it has taken me forever to write this for Tina due to having daily migraines and then when I did feel up to writing, hundreds of thoughts, emotions and key points would just bombard me to where I knew there was no way that I could write something that would be comprehensible. So Tina, thank you for being patient. And thank you to those of you who are taking your time to read this.
I first experienced a headache in 1987, my senior year in high school. ( I am now 47 – I figured I’d take the math out of the equation so you could concentrate on my story ; ) The headache lasted about a month, nothing bad… just more annoying than anything. It went away and I thought nothing more of it due to headaches not being something I ever had issues with until that point in time. In my mid twenties I was starting to get more frequent and irritating headaches (what I called them). My family doctor put me on a beta blocker, but I stopped taking them because I didn’t feel as though they helped or that I needed to be on a medicine such as that just for a few headaches. Again, I was doing fine until in my early to late thirties when these headaches were becoming more frequent and intense. It was at this time I noticed where some days were harder to function than others. But I had to go to work because there were bills to be paid. I also volunteered as an EMT/FF at a fire department and for an ambulance company covering special events,  I worked out 6 days a week and was extremely active. Somewhere in all of this, I was also in the Army Reserve for 8 years. So a pretty average life… nothing spectacular or to write home about. I was put on some other medications to try which were a hit or miss; however, due to the frequency of my headaches, I had to have something to at least try and help with the discomfort I was experiencing.
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In 2004 I was now past the point of what my family doctor could do for me. Since I was never medically given a diagnosis of migraines, I felt as though I owed it to myself to see If I did truly have migraines and what could be done about them. In 2005, I went to a neurologist who diagnosed me as having chronic migraines without auras. From this point on my life changed. Migraines, (not “headaches”) became a common word in my vocabulary. So did the following classes of drugs and the numerous drugs that fall under these classes mentioned: preventatives, rescue meds, OTC (over-the-counter) pain relievers, triptans, ergots (not snails, but i’d try them too if it was known to relieve migraines), ER cocktails, anti-nausea, opioids, Dihydroergotamine, glucocorticoids, beta blockers, antidepressants, anti-seizure, and Botox.
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Hopefully I haven’t lost too many of you at this point. I’m sure as you are reading this, you are probably thinking, “Hmm, I thought she had migraines, but she’s just a 47 year old who has an opioid habit and allergy issues so now needs OTC drugs and experiences nausea. Then on occasions she decides to go to the ER for a ‘special cocktail’ instead of  a bar like most normal people. Now due to her previous usage she has cardiovascular issues and is prone to seizures which causes her depression that leads her to thinking she isn’t pretty enough and should get Botox.”  As silly as all of that sounds, this has been my life over the past 20 years. I’ve worked with 3 Neurologists to try all these different types of pills, not really knowing which one or combination of them will work. It was a lot of “lets add this one to help”, “no lets just change it to this class of drug – you haven’t tried it yet”, “well what did work before your second child isn’t working now, so we’ll try another class”, “are there any you haven’t tried???????”  To add to the stress of it all, most of these medicines are not even approved through the FDA for use on migraines. It was more like, “oops… look what we discovered, this channel blocker has not only helped this persons heart but their migraine too.”  So the “experts” just keep piggy backing off of other drugs instead of finding treatments that are truly designed for migraines and might actually work better and do some good.
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As a migraineur (yes true word meaning one who suffers from migraine… one site even gives the name a 4 out of 5 on how difficult it is to say, maybe it is those same people that can’t find a cure :), I have dealt with a lot in my life – personally, emotionally, and physically – all stemming from this inherited, neurological, abnormal activity and electrical dysfunction of my brain.
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Personally,  I miss out on so many things with friends and family and things that I once enjoyed doing due to the pain and other symptoms associated with the migraine. It also interferes with my day to day tasks, so forget me trying to do house chores, workout, go outside to run errands, drive, or be intimate with my husband. Playing with my children is limited during an episode. As a matter of fact, I often have to make them play something without me and then only after tolerating the noise level of whatever their playing for as long as I could, I have to ask them to find something else to do that isn’t as loud because at this point I feel as though my head will explode. It hurts to move well enough to talk… and the nausea  becomes unbearable. I have spent countless hours in a dark room to avoid any noise or light while praying the meds work this time and my husband won’t have to take me to the ER again. These are moments I can never get back. The disappointment of that alone starts to wear on me because over the past 4 years my migraines have become worse than they have ever been .
 
Emotionally, I am a wreck 95% of the time – consumed with guilt… a lot of guilt! Guilt because I can’t always keep or even make plans because migraines change those plans – and I never used to be “that” person. Guilt that as a stay at home mom of 2 kids and 3 dogs that I am not pulling my weight. Guilt that my husband, who has blessed me with the ability to stay home and care for our kids, has to come home from his job and pick up my slack as well as tend to the kids and dogs because by that time I am exhausted from trying to ignore my symptoms and pushing through the pain to make sure that those in my care are getting even their basic needs met. Then I have tremendous guilt when it comes to our children. How many times they have had to hear “mommy is resting”, or “play quietly,  mommy’s head is hurting”. Or I miss a swim lesson, or have to tell them I can’t play right now. These things are heart-wrenching, devastating, and stress me out. The last thing I want to ever happen is for my children to look back on their childhood memories and have all the good times, the love, the laughs, the vacations, everything, all be overshadowed by their mommy being laid up in a dark room with ice packs on her head or being in the hospital. It is a feeling I pray no one ever has to experience. However, with there being over 38 million people a year that live with chronic migraines in the U.S., I know I am not alone in my feelings of guilt over having this life-long disability that makes me a different person than who I once was and my husband married.
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Physically, I deal with some type of migraine nearly every day, some days are easier to get through then others. It is less common for me to say I’m having a great day, instead of saying I have a migraine today. My family and I live around my debilitating migraines and it sucks! I have learned how to function through my milder attacks and try to make those days as close to normal as possible, which usually results in me over-doing it by trying to catch up on what should be routine chores but fall to the way side due to an episode. Each episode varies in duration, symptoms, and intensity; so when I am having an attack that I cannot function through, I try everything in my arsenal to make the excruciating pain go away… even reaching out to others in migraine support groups because in that moment I think there just might be something I haven’t tried or heard of yet.
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We migraneurs worry about our triggers, if they are even known to us, and which one of them is going to cause the onset of a migraine. And there are numerous triggers: if we sleep too much or not enough, the weather, smells, the sun, noise, indoor light, foods, drinks, hormones, dehydration, rebound headaches, physical factors, some medications, wearing your hair up, if we get too excited or over stimulated by our surroundings or actions. We know that there will be another attack but we don’t know when.  People who don’t experience migraines personally or have not had a loved one that is affected by them cannot begin to comprehend what it really means to have chronic migraines. This is why it is so important that we try to educate as many people as we can about this neurological disorder and raise awareness on this topic because it affects so many lives on a daily basis.
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Migraines are one of the many invisible disabilities that exist. Because there are no visible symptoms, we are judged by people who don’t understand (and may not want to be educated about) the fact that we are suffering and have a debilitating disease, even if we don’t look how you assume we should for a sick person. Because we don’t look sick, people are very inclined to give us advice such as, “take some Advil, it works for my headaches”, “you should drink more water”, “its just a headache”, “try not to stress”, “stay away from MSG”, “you’ll be fine, it will pass”. We deal with rude or insulting comments from people who may mean well. We are treated as drug addicts by many of the ER doctors and staff, and that preconceived notion effects the treatment we receive. We are looked at as being lazy, or just not wanting to deal with our children, or just overreacting to our “headache”.
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If there is only 1 thing you take away from this blog then the most important thing would be to never tell us it’s just a HEADACHE! This can make us feel more worthless and guilty than we already do. Migraines rob us of the things in life that if you don’t have a chronic illness can be taken for granted, such as: opening the curtains in your house, not having to always wear sunglasses, reading, cooking, cleaning, wearing your hair up, working, exercising, laughing, being silly and loud, playing with your children, having a spontaneous silly dance party with your kids, playing with your pets, interacting with people, shopping, using the computer or cell phone, watching TV, maintaining relationships, not being in constant fear of losing your job, being able to construct a simple sentence or completing a thought.
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The reality of migraines is that they are poorly understood, often under diagnosed, under treated, debilitating, life-long altering, and a chronic disease that affects the whole body and significantly diminishes our quality of life  They cause structural alterations in the brain due to numerous and ongoing episodes. And there is no cure. The long-term stress of coping with a chronic neurological disorder may also increase the risk for other illnesses, including: anxiety, depression, sleep disturbances, and other physical conditions.
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Migraines are the third most prevalent illness in the world, the sixth highest cause worldwide of years lost to disability, and the leading cause of disability among all neurological disorders. The best that we can hope from the scientist and medical community is for specifically-designed migraine medicines that help to diminish the frequency, duration and intensity of our migraines. From others, we need less ” helpful” advice because, trust me, there isn’t much we haven’t already heard, researched, or tried. We need less judgment and more willingness to learn about our disease and help to spread awareness.
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To our friends and family, please do not think for one moment that we wouldn’t rather be spending time with you. We would love to be able to just push through and do things that have obviously been neglected, but often we just can’t. We see the disappointment on your face. We know you are also affected by our disease, and if we could ignore it, take a pill, have a surgery, or anything else to make this horrible illness go away and make our lives better, I assure you that we would in a heartbeat. Unfortunately, due to migraines, this is our life now as we know it. So on our good days we try to be a closer version of the old us; to make the best of those days and cherish each moment with you, because we know that the bad days usually outnumber the good. We need your compassion, love, support, and understanding even though we know at times it can be very difficult on you as well. Asking if there is anything you can do to help is far more appreciated than asking how we are feeling. And some days our answer will be “no, there isn’t.”  But we will know that you care and are trying the best you can or know how… just like all of us who live with this chronic and evil disease.
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To my husband and children, you are loved and our time together is never taken for granted. You add more joy, love and laughter to my life than I could have ever imagined. Thank you for loving me, always.
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I hope each of you are able to take something away from Sarah’s story. If you also suffer, I imagine you nodding your head as you read, identifying with her words. With the numbers she just gave on how many people have this condition, I am sure that if it is not you, it is someone you know. I hope this gave you a better understanding of what they are going through. For more information, you can visit any of the links below. If you have any specific questions for Sarah, leave them in the comment section. She’s happy to answer them!
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Resources:
World health organization www.who.int
If you have a story that you’d like to share, I’d LOVE to hear from you! Click HEREÂ to be directed to my Contact Me page.
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