Migraine is NOT a Headache: A Plea on the Last Day of #MHAM

Migraine is NOT a headache. Really. It’s not.

This is confusing for many of you who do not have migraine disease, I know.

I know that our awareness campaign has the word “headache” in it. I know that many of the groups that focus on migraine, including the American Headache and Migraine Association and the National Headache Foundation, have the word “headache” in their names. I know that many, many people say “My head hurts” when they are experiencing a migraine attack. I am well aware that the scientists researching migraine disease often use the word “headache” in their papers, and that the World Health Organization categories migraine disease as a “headache disorder.”

This does not make migraine disease a headache.

Migraine disease is NOT a headache. 

A severe headache is one of the most common symptoms of migraine disease. It is not the disease itself. Many people living with migraine, myself included, can and do experience migraine attacks that do not include the characteristic head pain. This does not mean we are not having a migraine attack. We are. It does not mean we are not experiencing profound disability. We likely are.

This is possible because migraine is not a headache.

Migraine is a complex neurological disease that affects every system in the body. It affects how we hear, see, smell, think, feel, speak, digest food, and sleep. It can affect our balance, our sense of touch, our mood, our ability to use our limbs, and our energy levels. It changes the way we experience pain. And, yes, it often causes us to feel pain.

But, again, it is not a headache.

Migraine is a disease. A genetic, neurological disease that has no cure and is one of the top 10 most disabling conditions in the world. Calling it a headache reduces understanding and only perpetuates the stigma so often levied against those who live with it on a daily basis.

Migraine is not a headache. So please, if you do nothing else to support those of us with migraine in the coming months, please, please stop calling it that. That’s my final #MHAM plea.

 

 

#Weaning and #Migraine – Treatment Update

My little man will be 19 months old on the 12th, and with his increasing independence comes a number of changes, both for him and for me.

I’ve been practicing baby-led feeding and baby-led weaning, which means we’ve had fewer struggles than we might otherwise have had along our journey but it also means the weaning process is taking significantly longer than it otherwise might. That being said, my son took the lead on night weaning about four months ago, and I am happy to report that we are now officially done with the 2 a.m. (and 3 a.m. and 4 a.m.) feedings. In fact, we’re down to just two nursing sessions a day: one before nap and one before bed. Neither lasts longer than 15 minutes, and I’m hoping to drop both soon. While this is really good news for me (I can’t wait to have my body to myself again), it is also not so good news.

Hormones change and fluctuate a lot during pregnancy and breastfeeding. They also change when we begin to wean, and again when we finally drop that final nursing session. For some women, this isn’t a super big deal. I’m not one of those women.

As I shared on this blog, my migraines were terrible during the first half or more of my pregnancy. They eased up a little during the third trimester and were largely absent during those first few postpartum months. Then, they kicked in again, and as we’ve progressed through the postpartum period and into the toddler years, they’ve gotten worse. This is due in part to the hot and ever-changing Texas weather and in part to weaning.

Weaning related migraines are nothing new. If you search the internet, you’ll find a large number of women discussing how much worse their migraines got when they stopped breastfeeding. Somehow, though, it was something I wasn’t entirely prepared to experience.

Unfortunately my expectations had little to no effect on reality.

The last eight weeks have brought a migraine more days than not. While I have a lot of non-prescription tools for coping with migraine and a supportive family, it’s become necessary to go back on medication. Thankfully, Kellymom.com, a wonderful resource for nursing mothers and their doctors (my neurologist even references this site), offers a pretty in-depth look at almost all of the common migraine and pain medications. Taking both the website’s information into account and the age of my son (babies older than 3 months usually aren’t as affected by medication in mothers’ milk as much as younger babies), my neurologist and I have crafted a new plan. For those who wonder:

  • I’ve started amitriptyline as a preventative. As of now, I’m only on 10 mg once a day, but I’m working myself up to 30 mg. We’ll reevaluate my progress when I go back for a follow-up at the end of the month. I’m still taking 400mg of Magnesium as a preventative as well.
  • I have prescriptions for a tablet version of Prodin for use as an abortive. I also have a few samples of a Zomig nasal spray, though I haven’t used it yet. (Triptans generally don’t work for me, and I figured I would wait to try this until I’m completely done weaning, just because it makes me more comfortable. Despite the fact that I’d heard somewhere that triptans were no-nos when breastfeeding, Kellymom.com actually says Zomig is “moderately safe.”)
  • I also have Fioricet and Promethazine tablets and a nasal spray version of Toradol for use as rescues.

I haven’t used most of these medications yet, as I try to avoid medications as much as possible. I have taken two of the Fioricet tablets, but so far I’ve experienced little relief. I’m hoping the amitriptyline will bring help. If it doesn’t, I believe we’re going to try a calcium channel blocker, which is one of the only preventatives I haven’t tried yet. If that doesn’t work, we’ll wait until my son has decided to completely give up nursing and then try a few other things. I trust that eventually either time or a medication will help.

Talking about #Migraine: Why (and When) It’s Hard

I’ve found it difficult to write this month. Each new idea arrives too unformed to share immediately, too vague to understand.

Some days, it is easy to write and talk about migraine. Days like the afternoon a week ago when my father-in-law asked me over a beer to discuss the Alice-in-Wonderland-syndrome hallucinations that accompany my auras. On days like that, I have no trouble recounting my experiences, no matter how incredible they might seem to someone who doesn’t have migraine disease.

Other days, though, like last Saturday when my husband wanted to chat about the potential causes of migraine, it’s not so easy. On those days, the hard days, I feel too raw to write and talk, too emotionally spent to walk someone without the illness through the experience of having it. This can hurt the people, like my husband, who just want to understand what I’m going through and help if and where they can. Intellectually, I know this, but that doesn’t make the hard days any easier.

Over the past few days, I’ve tried to figure out why some days (and months) are harder than others. Why on some days the words – either oral or written – pour forth and why on others they don’t. What I’ve learned is there isn’t one reason or even a handful of reasons. There are a multitude that may or may not apply at any given time, including:

  • whether we’re having a migraine; (I find it exceptionally difficult to form complete, well formed sentences in the midst of a migraine attack. Migraine also makes me irritable and emotionally sensitive, which can mean certain conversations are more difficult to have in the midst of an attack.)
  • whether we’re recovering from a migraine; (The migraine hangover is notorious for stealing my ability to put effort into a conversation.)
  • whether we’re feeling emotionally secure; (It’s hard to open up about things that we feel might make us look bad/lazy/stupid/”crazy” if we’re feeling insecure about ourselves.)
  • whether we’re tired; (Sleep deprivation turns even notable geniuses into blathering idiots.)
  • whether we’re stressed; (Stress does a number on our mental capabilities. It also saps our energy.)
  • whether we’re feeling understood; (If we’re feeling misunderstood, we’re already operating from a place of defensiveness and insecurity, which makes effective communication nearly impossible.)

The truth is, creativity and self-expression are, like migraine itself, often cyclical. Our ability to express ourselves is tied, like our physical health, to any number of things. The best we can do is accept this reality and ask those around us to hold off on the questions until we feel like talking.

How about you? What makes it easy or difficult for you to talk about migraine?

The Heredity of Migraines: Migraine Awareness Month #20 #MHAM20

It was 2008 when I learned I wasn’t the first in my family to suffer from chronic migraines. I had been diagnosed about six months prior with “intractable migraine with aura,” and I was feeling the loneliest I’d ever felt. One day, while talking to my dad on the phone, I found out understanding was much closer than I’d ever thought.

“Oh, the doctors don’t know what to do, Dad,” I said. “Nothing seems to work.”

“You should talk to Grandma,” he answered.

I was bewildered. Why should I talk to my grandmother, his mother, about my symptoms?

“She’s had them for years,” he said. “When we were younger, there were lots of days she could barely get out of bed.”

I was stunned. I knew migraine disease was at least partially hereditary, but I’d never known that anyone in my family suffered from the disease.

When I called my grandma later that day, she admitted that she’d had them for decades.

“I thought you knew,” she said. “It was awful. In my day, they didn’t really believe they were anything more than a woman’s hysteria, but I was lucky enough to have a doctor whose wife got them, too, and he tried everything he could to help me.”

Figuring out the genetic link for my disease helped me tremendously. I didn’t feel angry or victimized that I got stuck with the migraine genes when neither my father nor my younger sister did. Instead, I felt blessed to have a living relative who knew the agony I experienced every day. A woman who had been where I was and lived through it. Knowing that someone close to me suffered as I did also gave me some idea of what to expect (a true blessing for such an unpredictable disease).

While most women’s migraines go away as they age and/or with the onset of menopause, my grandmother’s never have. She still gets an average of at least one per week. And, while we don’t have the same kind of migraines (I have aura, she doesn’t; triptans help her, but do nothing for me), this knowledge of my genetic past has helped me recognize how important it is to learn how to live well with my migraines, just in case they don’t go away.

Strangely, I don’t find this a depressing thought. I see it as a lesson in preparation, and a reminder to be thankful for all the other things my grandmother passed down to me.

 

— Are you suffering from migraines that don’t respond to treatment or simply overwhelmed by the emotions and day-to-day difficulties of living with this life-changing disease? Check out my new e-book: Finding Happiness with Migraines: A Do-It-Yourself Guide. It’s available for sale on Amazon and BarnesandNoble.com.

 

Overcoming Setbacks: Migraine Awareness Month #4

Living with migraines can be disheartening. Too often, the disease ruins our plans and makes us feel like we can’t accomplish our goals. On those days, it can be difficult to pick ourselves up out of the puddle of doubt we’ve landed in and forge ahead. But, it can be done.

If my experiences living with migraine disease have taught me anything, it’s this: I am stronger than I thought I was. And, so are you.

Living through the pain, nausea, vertigo, fatigue, uncertainty, and light and noise sensitivity of migraine isn’t easy. It takes bravery to make it through each day and an often unappreciated optimism to continue setting goals for ourselves even when we don’t always achieve them. These are characteristics we all share, and yet few of us routinely see ourselves as courageous, adventurous, and full of hope. But, we are. And, acknowledging that we are is one way we can overcome the setbacks migraine throws at us.

When I’m feeling particularly down or discouraged about my ability to make my life into what I want it to be, I remind myself of this: I’m still here; I’m still fighting. Migraine, despite everything, hasn’t beaten me. And, that is something to get excited about.

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June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

 

Feeling Less Than Able

Lately, I’ve been thinking about my life and the impact I want to have on the world. And, as I consider the list of things I’d like to accomplish, I’ve realized a disturbing fact – there are some things that I now doubt my ability to do.

These include the ability to:

  • Commit to any high-stress job that requires long days in a typical office environment. This means many things I would love to do – such as going to law school and working as a PD,  going to grad school and finishing up my neuropsychology degree,  or opening my own financial management consulting firm for small businesses – are potentially out of the question forever. Fluorescent lighting, varied sleep schedules, and long, long hours all mean increased migraine.
  • Make promises to my daughter about future events. Some days the migraine comes on full force, and there is nothing I can do to stop it. It doesn’t matter if she’s in a play, or has an award ceremony, or wants me to attend a field trip. I can’t do it. And, knowing this can happen, that I can be completely disabled at a moment’s notice, I don’t promise it. But, I wish I could.
  • Pack my calendar. I can get a lot of stuff done in one day. I can write five articles, edit three chapters of a book, read two newspapers and two trade journals, research a big project, enter two poetry contests, help my daughter with homework, go to dance class, make dinner, balance our budget, pay bills, and spend quality time with my husband, all in one day. IF, it’s a good day. But, if it’s a bad day, if the migraine kicks in by 7 a.m. and ramps up to a level 7 or 8 by noon, I’m lucky if I get even one of those things done – let alone all of them. So, while I can crowd a lot of stuff into one day, I have to leave room for the bad days. And, this means planning for less than I feel I can accomplish, just in case some (or all) of tomorrow’s scheduled work has to be pushed off until the next day. And, I hate that.

There are, of course, more things that could be added to this list, but these are the big things. The things that make me feel less than able even when I don’t feel dis-abled. These are the things that remind me, on a near constant basis, that I am, in fact, chronically ill. And, on some days, I really, really resent that.

What about you? I know I’m not alone. What has migraine disease left you feeling less than able to do or accomplish?

Explaining “Migraine” Doesn’t Mean Just Another Headache

How do you explain that a migraine attack is more than a routine headache when the pain is so subjective, the symptoms so strange, and each experience so different from the one before?

I don’t have a clue. That’s the problem. As regular readers will recall, my migraine attacks have become increasingly frequent since around the beginning of August. The summer heat combined with the stresses and lack of sleep inherent in the beginning of the school year (when both my husband, a teacher, and my daughter, a third grader, return to their daily grinds) equals a full blown attack by about 3 pm almost every day. An attack which my husband frequently describes as “a headache.”

Migraineurs know that “a headache” doesn’t even begin to explain or describe a migraine attack. There are a number of other symptoms besides pain that present during an attack, including nausea, lethargy, visual disturbances, disruptions of speech, light sensitivity, noise sensitivity, appetite changes, and more. But, they change (at least mine do) from attack to attack, which means every migraine episode is different from the one before – sometimes dramatically different. In addition to the myriad symptoms of an attack, using the phrase “a headache” to describe the intense, ice-pick-like stabbing pain of a migraine seems almost laughable. And, while I know he was trying to be understanding about my pain and the fact that I was ill, the lack of overall understanding apparent in his description left me feeling weak and discounted. After all, what kind of a wuss can’t handle “a headache”?

This is, perhaps, one of the most frustrating aspects of living with an invisible illness. I’ve tried telling him to research it, but there’s so much nonsense out there written by people who don’t really understand what it’s like that it seems futile to just direct him to the internet at large. What do you do? What helps you explain your illness to others?