So mom doesn’t want her talking about her … but I can talk about me … and the migraines. My mom has always had a hard time calling them migraines. She tells people I have headaches, and she has a hard time explaining they are migraines. She was raised in the era of “migraines are all in you head”, so telling people that is what I have is like saying I have a fake disease. I think she genuinely knows I have migraines, so she may be trying to protect me from the judgement she associates with the disease.
Yet that is why I speak out. There is stigma with unseen diseases, such as my migraines and my sister’s epilepsy or Fibromyalgia and the wealth of unseen illnesses. When I hear people complain about someone who looks fine, and the assumption is that they are using a disability to gain government funds or a handicap services, I don’t understand how they can know what another person is facing internally, be it mind or body. Then again, I tend to give people the benefit of the doubt. Or maybe it’s knowing what it’s like to be judged for what is unseen for myself and my sister.
Because migraines and epilepsy are now more widely understood, I have a voice I would not have had a few decades ago. The treatments are growing. Doctors are interested and gaining knowledge. Help is more available than ever before.
I am listening to “Furiously Happy” by Jenny Lawson. She has mental illness and shares what life means to her with humor. I find it extremely relatable with migraines. She inspired me to go on with this series at least on the migraine side of this MAD life.
Migrainuers are a varied mystery to everyone in out lives, including the medical community. Our migraines differ from one another. Some symptoms of the head pain are that it is shooting through from one side to the other, only one hemisphere hurts, and one or both eyes hurt. Head pain can feel like … my head is being squeezed between two frying pans, squishing both ears; a small cannon has been shot through my temple and out the back of my head leaving a gaping, bleeding hole, but only on one side; a slow stabbing over and over going in a single quadrant; like peter rabbit is the size of a rhinoceros and is cartoon donkey kicking the top left or top right or top left rear, etc. of my head … with both feet … without ceasing; or like the ceiling is being lowered and crushing the top of my skull.
Migraines do not need to include head pain. We’re pretty sure now I was having tummy migraines from around 10 years old until 16. Then it started including head pain and nausea. Then all the fun started. I was diagnosed at 18, but I’ve had them much longer.
Our symptoms change over time and differ per person. Sometimes I won’t have the same symptoms for multiple migraines in a row. For me, nausea, head pain, and aphasia are my usual. To name a few of the other symptoms that run willy nilly: dizzy, vertigo (not the same as dizzy), fever, overactive bladder, painful joints, numbness in face or extremities, anger, the top of my head itches so that I look like a monkey with fleas, extra ringing in ears, depression, everything tastes and smells like tin, hair hurts, breathlessness on stairs or with increased activity, teeth ache, slow to think, jaw feels I’ve been in a boxing ring with a pro, smelling things that are not present, loosey goosey with the poopy, sensitivity to light, sensitivity to sound, sensitivity to smell, angry tum tum, swollen and throbbing eyes, tremors, extra stuffy nose, slow to think, and bitchiness. This is not an all inclusive list. I’m sure others who live with migraines can easily add to this list.
Then there’s severity. I am exceedingly fortunate that my migraines run the gamut of 0 to 10 on a scale of 10. Not having one is a zero. When I get them, I often straddle 5. If it’s 5 or less, I go to work. If it’s 6 or over, everyone is better if I stay at home because my thinker isn’t going to work much and I cannot be very productive. I hear others only ever have a 10. I am sick for them, because some of these people have those migraines nearly all the time. With a migraine of 5 or lower, I am able to use essential oils, reduced lights, and acetaminophen (generic Tylenol) as a few tools to go to work or stay at work. Or events, parties, church on Sunday. Whatever the case may be. I am not at my best, but I am not confined to bed.
That last one in the list of symptoms reminds me that although I do not have the traditional aura (others tell me this may include flashing lights or visual disturbance or smelling unusual things), sometimes a couple of other symptoms will show up before an explosion of severity occurs. When it comes to that last one in the list of symptoms, I never knew until my brother moved out that I was, in his words, “a bitch” the night before a migraine. He always knew when I had one, but he never said anything. I mean, who wants to use that word to describe their usually kind sister … who occasionally becomes a monster when pain is headed her way, but she doesn’t yet know about the freight train of pain moving into her personal space? He was NEVER wrong. However, had he let me know, it would have helped. I could have treated it the evening before. Now he doesn’t live here, and my mom thinks I’m usually an ornery cuss, so she can’t tell the difference.
In the last three decades I’ve tried medications in every single class of medication, acupuncture, acupressure, biofeedback, countless diets (gluten free, vegetarian, no dairy, blood type, etc.), massage, juices, vitamins, herbs, chiropractics, essential oils, and the list goes on. Acupuncture worked, but I couldn’t afford the frequency needed the first few months, and insurance doesn’t yet cover it in this country. I now have a cervical rhizotomy once-a-year, take one preventative medication daily, and one abortive as needed. This works for me. I have gone from no less than 20 days a month in migraine to typically only migraine with large temperature changes in the weather or precipitation (fog, rain, snow, etc.). This is a game changer for me. I can function most of the time!
I am so glad I did not have children. The thought of handing this off to them makes me ill. If I want children, I’d be glad to adopt, especially a child with migraines too. Although I’ve no idea how I could have cared for them, adopted or birth, much of the time. Keeping a job has been a delicate balance. Making commitments is really a guessing game, but less so having been through the flaming hoops of trial and error to learn what works for me.
The reason I make myself function is my sister Cheri. (Spell check just asked if I meant cherished, and I do cherish her greatly.) She had epilepsy, but no one knew it until she got married because they were night siezures. As she got older, they got worse. Her life altered again and again until the seizures took her from us. She never gave up trying to find a way to stay active, be a mom, take care of her home, help her brother with the fruit stand, find that white knight of a man to love, keep peace in the family, and just get out of bed each day. I am now 5 years older than she was when she died. I wish there had been a way to take her pain and that disease out of her life. Since we couldn’t do that for her, I am glad she’s a treasure in heaven where she’ll never know another moment of pain.
Migraines have been a part of my world for nearly 2/3 of my life. At this point, it is who I am. Since they partially stem from arthritis at the top of my spin and the bottom of my skull, I don’t expect them to abate as I enter menopause. I know many women who found relief then. For some unknown but joyous reason, my dad’s stopped before his 40th birthday. I’m so glad that he never had them as frequently as I’ve experienced.
So, it’s a Migraine Life for me.
The moral of the story: We all have battles we fight. They are not all seen when a seemingly able bodied person gets out of a car from the Handicap spot at the grocery store and uses the Bridge card to buy groceries. I cannot judge that woman; she could well be me. We must end the stigma and assumption when reality shows us again and again the stigma is usually fiction. If we speak kindly to one another instead of judging from afar, we could see this up close and personal.