The Diagnosis*

The problem with this blog is it’s too…niche.  I write about chronic pain, and hospitals, and doctors, and needles.  But I also write about marriage, and phone calls, and walruses.  What genre is this?  Fantastical memoir?  A mostly useless advice column?  Medical nonfiction comedy? No genre will ever fit, not without an asterisk.  So I think this blog will eventually fade into the dusty corners of the internet because it’s hard to describe, and also because it has no click-bait stock photos.  

I have the same problem with describing my headaches.  There have been so many questions from loving friends and family, who want to know what I’m experiencing because they care.  And I’ve received similar questions from triage nurses at the E.R., naggles in hospitals, and specialists in their offices: “What is the problem?”  Every time, I’ve wanted a concise answer to give.  And every time, I feel like there isn’t one.  Because each week, sometimes each day, or even each hour, of the past year has come with its own unique adventures.  I’ve spent some hours curled up in a ball, unable to feel my limbs and collapsing under the pounding of an invisible hammer.  There have been days and days of dizziness and nausea, and weeks worth of stabbing headaches above my left eye.  I’ve spent a total of 25 days in a hospital and another 25 million days waiting in waiting rooms.  For an hour here or there, I couldn’t move my hands or feel my tongue.  (Who knew that was a thing?)  Vertigo was an on-again-off-again friend for about three months.  I’ve lost count of the number of sleepless nights.   And through it all, I wished I couldn’t feel my head, as I’ve spent nine months with a 24/7 headache (which I named Draco).  

I have a niche sort of headache problem, don’t you think?  This is why I, like so many others with chronic illness, had a lot of trouble getting a diagnosis at all.  My first doctor thought I had a rare infection, then I switched to another doctor who diagnosed me with panic attacks.  Two months went by before a friend from church guessed I was actually having migraines (thanks, Thao!), then a month more before finding yet another doctor, who agreed, and astutely observed that I was having bad migraines that didn’t really…end.  

So I received a diagnosis that fit, sort of: intractable migraines.  This means, essentially, bad and long-lasting migraines.  But some intractable migraines are over in three days, not continuing for more than three months, like mine.  Some intractable migraines can be managed at home, without needing to use more free hospital toothbrushes and eye masks (and graham crackers and juice, and grippy socks).  So, I was told I had bad migraines, intractable migraines, but I felt like the diagnosis desperately needed an asterisk.

My husband and I set our sights on a more suitable diagnosis, constantly on the lookout for one that felt just right.  Abdominal migraines seemed like a good fit early on, though most of the neurologists I talked with didn’t agree.  New Daily Persistent Headache (NDPH) was on the table for a long time, since I developed a 24/7 headache pretty soon after getting my first migraines.  When the headache flare-ups became more stabby, this opened up possibilities like primary stabbing headaches and hemicrania continua to layer on top of NDPH, like a headache ice cream sundae.  Hemicrania continua was a frontrunner in my mind, because Latin medical diagnoses sound nice and serious.  I imagined telling the triage nurse at the ER, “I have hemicrania continua with NDPH” instead of “I have a bad migraine,” and finally getting placed higher up on the infamous waiting room totem pole, which is, I think, controlled by a coalition of triage nurses and the mafia.  But before it was clear if I had hemicrania continua or not, my headaches changed again.  And then again.  And again.  No more specific diagnosis stuck for long enough to end up anywhere but in my husband’s Google search history, which was growing larger and larger by the day.  

Finding a “better” diagnosis became an obsession, a purpose in a life that was consumed by something that felt much worse than a bad migraine.  My husband took the lead (as I couldn’t spend a lot of time looking at screens) and sunk deep into scientific papers, WebMD articles, and who-knows-what-else.  He kept looking and kept finding nothing better to describe what was happening to me.  

Days turned into weeks, weeks turned into months, and I kept telling loved ones and my blog readers the only thing I still knew for sure: I was having bad migraines*. *. *  I wanted to put the asterisk everywhere, even in conversations I wished I could say, “I have bad migraines, asterisk.”  It seemed like the only way to make clear that my diagnosis didn’t describe what was wrong in a way that people could really, truly understand.

So that’s how I felt, over and over again: misunderstood.  I lived life with an asterisk, wanting to connect with my friends and family but staggering under the weight of experiences and feelings I couldn’t explain.  I clung to the fading hope of a better diagnosis, the hope that somewhere there was a WebMD article which could bridge the gap between me and the people around me.  So many people with rare or chronic medical problems are desperate for the perfect diagnosis, as I was.  Some struggle to get a diagnosis at all, and find it understandably devastating when a name for their problem continually eludes them, or takes a long time to find, like it did for me.  I think it’s partially because when you’ve experienced anything that is too complex for words, it’s easy to feel misunderstood, and feeling misunderstood can also feel lonely.

I wish I could tell you the diagnosis journey ended the way I wanted.  But we never found the perfect Latin name to summarize all of my problems, and they didn’t name a new syndrome after me, either.  (Though I never asked, and I do wonder what the response would be if I asked.  I’ll take suggestions in the comments!)  But I, like so many others, am instead making peace with having a very niche medical problem and no perfect diagnosis.  That means I’ve stopped living life with an asterisk.  When someone asks me why I am on medical leave from work, or what I’ve been up to this year, I reply, “I’ve been having bad migraines.”  Sometimes I’ll say more, sometimes I won’t.

And I know people will misunderstand, or at least not fully understand, what I’ve been through.  Doctors and nurses will continue to misunderstand, too.  They’ll never know what “intractable migraines” means to me.  You won’t, either, even though you just read this niche blog post on my niche blog.  But it’s ok.  Because I’ve discovered that in the absence of understanding between people, there is an empty space where other things can grow.  Things like unconditional love, and friendship that is given in spite of imperfect knowledge.  This is why, since letting go of my need to have a perfect diagnosis and to be perfectly understood, I’ve grown closer to many people without even trying.  Because it’s possible to receive love in spite of my asterisks, and to love others in spite of theirs, too.

Quarantine Tips from a Professional Shut-In

If there is anything I’ve gotten to practice since dealing with chronic intractable migraines, it’s being stuck at home.  On some days, getting out of bed was even an accomplishment.  So though the times are unprecedented, globally, they are extremely precedent-ed to me, personally.  The whole country is now homebound, like I have been for nine months!  

Here are some tips I’ve picked up along the way from the bedroom to the kitchen to the bathroom and back again. I hope you find them helpful for surviving shelter-in-place.  

  1. Fashion really doesn’t matter anymore, so stop trying.  When I was in the hospital for my inpatient migraine treatment, I was briefly kicked out of my room so that my nurse could give me a new bed.  Why did I need a new bed?  Probably not for the reason you think, but I’ll let you use your imagination nonetheless.  I grumbled as I walked into the hallway, complaining that she hadn’t given me enough warning to let me change out of my pajama pants (which had donuts printed all over them) into my yoga pants (which had flowers printed all over instead).  I was embarrassed to be seen in my donut-ty attire, but my down-to-earth nurse scoffed and said, “Really?!  You’re in a freakin’ hospital.”  She was so wise.  Now I proudly go outside in sweatpants, a sweatshirt, and strange socks that I’ve worn three days in a row.
  2. Focus on one chore, abandon the others.  This creates a lower threshold for feeling a sense of accomplishment.  I choose to focus on keeping the house well vacuumed, because we have a Roomba so I can press a button and feel like I did something 30 minutes later without having actually done anything at all.  Let’s ignore the fact that there are dirty dishes in the sink, and we don’t have any more Kleenex or toilet paper.  Because the floor is vacuumed, until the dog moves and sheds all over it again!
  3. Practice culinary creativity.  I’ve had many good days recently, when my headache is just a headache and not a migraine, and I feel on top of the world!  These are the days when I make two loaves of sourdough bread, a new recipe from The Joy of Cooking, and some fresh vegetables for dinner (my dietary restrictions have somewhat lessened, which is an encouragement for cooking).  But other days are the type of days when I’m craving something more…lazy.  Do you have these days?  If you do, there’s still plenty of room for creativity in your cuisine!  You can, for example, make everything you eat the same shape: fish sticks, fries, and carrot sticks.  Or, go for a matching color palette: fish sticks, fries, and carrot sticks.  Or, declare it a kid’s meal theme night: fish sticks, fries, and carrot sticks.  I find that even on lazy days, there’s lots of room to express myself through food.
  4. Share your life, somehow, with someone.  I chose to do this by setting up a blog about headaches and wrapping my sorrows in funny stories, because really, who wants to read about migraines for this long if it doesn’t make them laugh?!  But every time I post, I say a quick prayer that what I write will encourage someone else.   And I end up hearing from many folks that do still read, and are encouraged.  I never imagined that sharing my thoughts and experiences about chronic pain would resonate with so many, but it turns out that deep down, lots of people can identify with loneliness, and hurt, and darkness.  We fight it together when we share our lives with each other.
  5. Remind yourself of true things on the bad days.  This makes encouragement from others into a nice bonus, instead of what strings you from one agonizing moment to the next.  When I’m having a “bad” day (like today, my headache is worse than it has been this whole week), I tell myself that there will be a tomorrow that’s better, because I’m almost certain this is true.  And I also tell myself I am loved in spite of my mess.  Because I’m very certain this one is true.

Bananas on the Brain

Dear Brain,

I’ve been avoiding writing you this letter.  There’s no point in trying to hide the truth from you, as I know you’re extremely intelligent, not to mention you have natural wit and a snarky sense of humor.  But I have, nonetheless, avoided this encounter because we seem to be having a sort of…disagreement. Or perhaps just a difference of opinion. It’s not a big deal, really, we’re still friends.  But it comes down to this: I feel I shouldn’t have a banana anymore, and I can’t help but notice that you feel I should have a banana.  This is a bit of a problem.

The banana has been around for a long time.  I’m sure you didn’t mean to hurt me in the beginning, as I’ve always found you to be a very nice brain. But after weeks turned into months, the banana made us grow apart. We stopped seeing eye to eye, and I started to wonder if we’d ever love each other again. So I had no choice but to learn about chronic pain from Cognitive Behavioral Therapy, and from regular therapy, and from different apps and podcasts.  These things have helped me to love you again, my dear brain, and I’m understanding bananas better, too. And I’m ready for us to start over, if you’ll take me back. Please give me a second chance.

But we should really talk about the you-know-what…the banana.  I’ve learned that your fight-or-flight physiological response is overworked, and that can perpetuate the banana.  In fact, you’re so stressed out that sometimes just me saying you-know-what pushes you over the edge. That’s why I’m saying banana instead.  But I don’t mean that you’re delicate or unstable! You’re just tired, and we’re both to blame. My perfectionism and tendency to take on stress has made it harder for you to get out of fight-or-flight mode. So I’m going to take it easier on myself and help you re-learn how to be safe and relaxed.  I’ll go out and enjoy the sunshine, and I’ll do things that make me smile and laugh. I’ll continue doing deep breathing exercises, too, to calm down the peripheral nervous system. We’re in this together, and I don’t mean just you and me. Donut is also a big fan of my new activities, because he has ample time to get chicken bones out of the trash when I’m deep breathing, and I force him to go on fewer walks nowadays (because walking is more enjoyable for me when I’m not dragging a shaking, lumpy ball of terrified fur down the street).

But there’s something else you should know, brain…and I don’t really know how to say this…you’ve changed.  Really, you have. The continuous bananas have caused you to create what is called neuroplastic pain.  This means your neural pathways have reorganized, and now it’s just as easy for you to remember pain as it is for you to remember my name.  You’ll always be my brain, but I miss how you were before. And I think, deep down, you miss the old you, too. If you let me help you, we can change your pathways so that they bypass bananas.  I’m doing stretches, and using ice packs and head massages and more acupuncture. Anything to help you forget about bananas for even a second! I know there will be hard days, because recovery is not a straight line, but the old you is still in there somewhere. I’ll remember this when you forget.

I want to rush back into normal life, I want to leave the bananas behind.  But if you need to keep throwing bananas my way…well, I won’t move on without you.  How could I? So I’ll try to slow down, I’ll try to not rush you like I did before. And if there’s anything else you need, just let me know.

Though I’ve never seen you, I’ll always love you.  Please write back soon.

Yours Forever, or until lobotomy,

Natalie

The Whisper

First, I want to say thank you.  In the midst of a global pandemic and the toll it’s taken on everyone, whether big or small, so many people have reached out to me to ask how I’m doing after my inpatient treatment.  It’s meant a lot to me because it’s hard to ask for attention at a time like this, when the extreme suffering of so many others is front & center in all of our minds, for good reason. So I receive your care as a gift I don’t deserve, and please know I’m thankful for each one of you who are reading this, because you clearly care for me if you’ve journeyed with me all this way.

I’m continuing to do very well after the inpatient treatment for my migraines.  I still have a headache, but it’s what I call a “normal person headache.” It’s not debilitating for most of the day, and it’s maybe even stopped a few times.  When I imagined my headache stopping, months ago when it was a far-flung fantasy, I imagined the absence of pain being so noticeable and so life-changing that I would immediately break down in tears, or start dancing, or something.  But it hasn’t been like that. The better the pain gets, the less I think about it at all. I start thinking about other things, like how beautiful the sunshine is, or how much I love the succulents in our front yard. Only when I look back on my day do I wonder if I perhaps had no headache while I was doing this or that thing.  The end of my pain is as quiet and mundane as its beginning was completely life-shattering.

The ironic situation of finally having energy just as the world shuts down for quarantine has left me with a lot of time to think back over this eight-month-long medical adventure.  Though it’s not over yet, sharing the funny moments with you has kept me afloat, and I hope it’s made you smile. But I’ve learned a lot of serious lessons, too. There is one in particular I’ve wanted to share with you for a while now, but the right words have eluded me.  Coincidentally, or miraculously, depending on your worldview, I skimmed over my journal today to look for some inspiration. And I found more than that- I discovered that I wrote an entire blog post about this topic already, and then forgot about it! So now I get to give my brain a little break and just type out this journal entry.  I revised it slightly for clarity, because I remember how tired I was at the time I wrote it. Please enjoy…I hope this gives you strength in what is, for all of us, a very dark time.


22 December 2019

It’s nearly 5 months since everything fell apart.  Now I’m 28, and I have multiple gray hairs. I started noticing them last week, though Cory says I’ve had them since the hospital.  He is smart and didn’t say this until I noticed them.  

One thing I’ve learned from chronic pain, more than anything else, is that I’m no saint.  Quite the opposite! Before my migraines and headache attacks started, I had other health problems that slowly escalated into my now severe problems.  All that to say, I saw from early on in this journey that the road was going to be long & hard, though I did not know to expect migraines or headache attacks back then.  And you know what? I was scared, like absolutely terrified. And I asked God to keep me from the pain. But he didn’t, and I was in a lot of pain shortly after. God seemed to have ignored me.  

And that was when, I thought, I’d become a super duper Christian with this unwavering faith in God that withstood barrages of pain, confusion, and loneliness.  Or at least one of those sick people who is an inspirational, cheerful superhero that restores everyone’s faith in the resilience of humanity. You know, the people that give you a warm & fuzzy feeling.  But I haven’t become anyone like that. In fact, oftentimes I’m so hurt and angered by my pain that I break down crying, or I push away people who I love, like Cory. And it will take a long while to unravel all of the anger and loneliness I dumped onto our marriage.  The funny moments I’ve written about are bright spots on what has otherwise been a time of deep darkness in my life. There are parts of it I’ll never want to share, I think.

It feels like a double whammy to not only go through crap in life, but to also handle it so poorly that you are left feeling like an uninspirational idiot.  I thought suffering would give me dignity automatically, but it gave me mostly sadness. And I’ve gotten mad at God, often.  

How do I tie all of this nicely with a bow for you?  How do I make this into a beautiful narrative with a quotable phrase placed elegantly at the end?  I can’t, not this time. But I’ll say one thing. In my loneliest and ugliest moments, when my life is anything but proof of a loving God and I’m screaming or crying or rolled up in a ball on my bed, there is one thing I know beyond any doubt: God exists.  I don’t know for sure that he is present with me, or that he loves me, or why he’s letting me suffer, or any of that. But the certainty that God exists is always there, like a whispering voice that never stops speaking, even when other voices shout over it for days or weeks on end.

I know for some, this is an entirely unconvincing proof of God.  I understand why you’d feel that way, and I won’t try to convince you otherwise.  I’ve given up on being inspirational and convincing. But I do find it odd that I still think there is a God, and I find it extremely odd that I think about this the very most when I’m at my very worst.  If it were up to me, I’d let the shouting voices take over and just drown in self-pity and sadness from time to time.  But the whispering certainty of God seems to have chosen me, in spite of myself. 

Joy, but Sadness

This week has been weird, and hard, for everyone in the U.S.  COVID-19 went from being something far away to something close to home.  Life as we knew it came to a halt over just a few days.  

This week has been weird, and hard, for me also. For different reasons. Or maybe it’s for the same reason, in the end. 

Last week, I was in a hospital getting my long-awaited infusions for treating my intractable migraine.  I was stuck in a room, constantly attached to an IV.  The hospital food was gross, and I had to deal with nausea, muscle cramps, and blood thinner injections in my stomach.  My room was so warm that we had to set up two little fans to make it tolerable.  I wasn’t allowed to walk by myself.  I wasn’t even allowed to shower!  

But by the second day of what I call “headache hospital camp,” my headache started improving.  And improving.  And improving.  There were moments when it was barely there.  The reduction of pain felt like freedom, like energy rushing back into my body.  I don’t know if I stopped believing or if I just didn’t have a big enough imagination, but it felt as surreal as a dream.  The IV, the side effects, the injections, the hospital food…all of it suddenly felt like no trouble at all.  I wanted to schedule my next infusions before I even finished.

That was last week.  

This week, my headache is not entirely gone, but I continue to feel better than I’ve felt in 6 months. We don’t know how long the relief will last, but I’m making the most of it!  I walked in the sunshine, I laughed, I danced with my dog.  My husband was taken aback by my smiling and goofiness! But I also have the feeling of barely escaping…the dark and shadowy sense of having avoided something terrible, but only just.  Because after my week of headache hospital camp, the headache clinic cancelled all of their inpatient treatments until further notice.  

The threat of COVID-19 is very real, so it makes sense to avoid bringing migraine patients into the hospital right  now.  But I waited for months to get this treatment.  We celebrated when it was approved, then again when it was scheduled, and we waited for it to come like a kid waits for Christmas day.  So I can’t help but think of the people who waited as I did, who are suffering with migraines as bad as mine, and then were told that headache hospital camp is cancelled until further notice- some of these people were just a week behind me!  What if they could have scheduled sooner, but they chose not to? How many more migraines will these people have?  How many of them are in constant pain?

The coronavirus is not only making people sick.  It’s keeping people from getting well.  And I was a week away from being one of those people.

So this week was weird, and hard.  But it’s not because of my headache, it’s because I get to enjoy feeling a bit better while someone else is forced to wait for it.  So I am thankful, but I am also sad.  I am rejoicing, but also imagining the agony of having no choice but to keep waiting.

The sadness of this epidemic causes even more sadness as it stresses our healthcare systems, as many people are put at risk, and as many others are forced to wait.  

Dear God, have mercy on us all, and comfort all who are overshadowed by this great darkness. Walk with us, and be near to those who must suffer for longer.

The Road to the Headache Center

As I sat waiting for my first appointment at the neurology office, I had a raging migraine and an unremitting headache.  I was in the ER a few days prior, but the drugs had mostly worn off and I was back to how I felt before. My headache kept waking me up at night, and I was constantly dizzy and exhausted.  The migraine medication I was taking at the time spiked my heart rate so high, it took me hours to even get to sleep. I used what little energy I had left to be nervous about the appointment, hoping that they could fix everything with a magic wand.  Meanwhile, across the waiting room from me, there was a man in a wheelchair who was paralyzed and unable to speak. His caretaker checked in for the appointment at the desk while I quickly scarfed down what I could of my sandwich and potato chips. From that moment, I felt what can only be described as chronic illness imposter syndrome.  And I couldn’t shake it, even though the neurologists I met that day seemed to believe that my head hurt. Migraines seemed like a minor complaint compared to ALS, or Parkinson’s, or basically any other problem serviced by a neurology office.

I felt it again during my next trip to the hospital, or in the ER more specifically.  I had been in the ER for two days and the pain was getting worse, not better. The attending neurologist and her naggle of residents came in that morning to inform me that I was getting discharged, like it or not.  “You need to manage this at home,” she said, “there are no other medications we can give you.”  The fact that none of the medications worked seemed insignificant, and it didn’t feel like much of a discussion.  As a consolation prize, the neurologists said they had put in a referral to the headache center, where they did offer more treatment options, including inpatient treatments.  But even still, I considered it a sort of miracle that I got a terrible migraine attack before they finished processing the discharge paperwork, which forced the neurologists to come back and give me a whole bunch of…get this…other medications!  And this is also how I got admitted to the hospital, where I learned that there are literally dozens of other migraine medications, most of which aren’t given in the ER.  Even as I waited one more night in the ER to get a hospital bed, I felt guilty, as if I had intentionally frustrated the neurologists who wanted me to go home and manage my pain alone. But the doctor who was overseeing my transfer gave me a glimmer of hope: he said after I got settled in the hospital, I would be evaluated for direct admission to the headache center!

But I was transferred to a hospital with available beds, not the one sitting directly above the ER.  One day in this hospital became two, then four, and then eventually a week, then more than a week. No headache center evaluation, no mention of it at all.  I brought up the headache center to every medical professional I met, asking how I could get in. No one knew. The first attending physician I had in this hospital converted my status from observation to inpatient, then told me that he was doing me a favor, implying that headache patients don’t usually get the privilege of inpatient status.  The neurologist I worked with there kept insisting I go to his office as an outpatient, while I kept insisting that I wanted to get into the headache center. This hospital also attempted to discharge me without medication that worked, just like in the ER. And yet again, my discharge got canceled shortly after I signed the paperwork, when I was in the middle of another headache attack.  

Then a nurse informed me that I was actually on the same floor of the exact hospital where the headache center’s inpatient treatments are done!  (The nurses always have the inside scoop.) I thought it was a miracle- I could literally stay exactly where I was and be in the headache center!  I asked my doctor how to transfer my care to be under the headache center, but he didn’t know. I asked anyone who breathed how I could get into the headache center.  Eventually, I got some sort of response: the head of the headache center’s inpatient treatment unit was on vacation. And that settled it, apparently.

I renewed my efforts after I transferred back to the university hospital, as there were many more doctors to constantly ask/annoy, and they were all great at listening.  I became a headache center broken record. The doctors were either more sympathetic or more exhausted by my constant asking, so they called the headache center head to ask what to do.  (How many headaches does a headache center head help if a headache center head could help heads?) The headache center head said that it is impossible to get into the headache center as an inpatient.  You have to leave the hospital, get a referral, and wait, with all of the people who can manage their pain at home.  Never mind that I wasn’t home yet, because there was still no medication that worked to manage my pain.

The first thing I did upon getting home with the long-searched-for medications in hand was shower.  Then I slept for a long time. Then I called the headache center. I verified the neurologists at the hospital had also sent a referral, which meant I had two referrals, so I was ready to make my appointment.  But they told me on the phone that there was no referral in the system. I didn’t know what to do. I considered going back to the hospital and finding the neurologist naggle and having one of them send another referral as I watched closely over their shoulder.  But I waited for the appointment with my primary care doctor instead, because this seemed more…reasonable. The entire past two weeks had been so extremely reasonable, after all, so there was no point in being unreasonable.

My primary care doctor put in referral number three, and told me why the first two referrals had silently disappeared: the headache center required that referred patients not take opioids regularly, because they can cause rebound headaches and increased pain in the long term.  One of the two medications that helped my headaches is an opioid. So there I was, a twenty-something who had NO desire to be addicted to opioids but who desperately needed them to manage my pain, being told I needed to either use the opioids way less often or go back to sitting in the neurology office.  I slowly weaned down on the opioids. That left me with mostly unmanaged severe headaches and one other medication, which diminished them just enough for me to be able to sleep at night, and a successful referral to the headache center.

I called the headache center again, ready to take their soonest appointment.  They told me the soonest was three months away, but I could go on the cancellation list.  I put their number in my phone so I would be sure to answer if they called with a last-minute opening.  In the meantime, I managed. I discovered acupuncture, started physical therapy, did an occipital nerve block, and got a (very stylish) ice pack that wraps around my head to numb the pain.  I had to go to the ER twice because things got out of control.  My headaches started waking me up in the middle of the night again. 

Waiting while in pain feels different from ordinary waiting.  There was more agonizing, more time spent wondering if I could have done something differently to unlock some secret shortcut, more energy going to doctors and trying to come up with new options that may make me feel better for even a little while.  It was lots of work and little progress. But, while sitting in church during one of the many Sundays I was waiting, my pastor talked about how sometimes when we feel like we’re going nowhere, we are actually exactly where God wants us to be: in a place that lets us grow deeper.  

So as I felt the pain of waiting, I spent some time seeking out online communities of headachey people, primarily on Twitter and Reddit.  Reading the experiences of others helped me grow deeper in thankfulness.  I am very fortunate to have access to good medical care, and to have many doctors who have advocated for me along this long road.  My options are well covered by an insurance plan, and I live in the same city as the headache center and all of the other doctors I’ve seen.  The road is much longer and much harder for many other people in chronic pain, as many find their treatment options to be prohibitively expensive or too far away from home, or they can’t find a doctor who takes their pain seriously.  Learning from the headache community also grew in me a deeper passion for seeking change. There are only 564 headache specialists in the entire U.S. for 47 MILLION people with migraine headaches. Also, no one knows what actually causes migraines.  I’ve felt these facts deeply, and I’m just now learning what I can do to enact change, or at least help bear the burdens of waiting and uncertainty alongside my other headachey friends.

The headache center never called with a cancellation, so I bided my time.  The long-awaited day came, and I found myself in a waiting room full of other people who looked normal, like I looked.  But all of us live lives of invisible pain, having our pain minimized, feeling chronic illness imposter syndrome, and getting our options limited at every turn.  So it was nice to finally be there, in spite of the fluorescent lighting in the waiting room, which is notorious for triggering migraines. I guess I should fill out their survey and suggest they add lamps and cozier furniture.

And, for those who are wondering about the actual result of my headache center appointment…they approved me for the much-sought-after inpatient treatment!  Back to the hospital I go. I’ll need to follow my trusty hospital tips, and I also plan to re-read the entire Harry Potter series while there.

If my story touched you, please consider lending your voice on a piece of proposed legislation that is soon to be voted on by the U.S. Congress.  I and the headache community would like to have this bill create more funding for training headache specialists. Click here to learn more, and then contact your representatives or your senators and ask them to supporrt AND amend the Opioid Workforce Act (H.R.3414/S.2892) to ensure federal funding of UCNS accredited Headache Medicine Fellowships.  Adding a little blurb in your note about what you’ve learned from my story would make a nice personal touch 🙂

Confounding Questions Neurologists Ask

These socks my friend got for me are possibly more confounding than what you’re about to read.

There are two things that happen every time I meet a neurologist: a neurological exam and a long list of questions.  And I go to a university hospital, which means that neurologists rarely travel alone and are most often seen in groups (made up of an attending and at least one, but up to five, resident neurologists).  What do you call a group of neurologists, I wonder? But the point is I’ve been asked similar questions easily a dozen times already, because at least two neurologists in every gaggle of neurologists will ask me the exact same questions.  And every time, I find myself confused by the same seemingly simple questions, which leaves me wondering if I’m about to flunk the test and get exposed as a headache fraud. I was reminded of this confundity again last week when I went to my long-awaited appointment at the headache center, which I will write about later.  But I realized while talking to the (rare) lone neurologist at the headache center that I’ve changed my answer to these questions from one neurologist to the next, which I imagine is very frustrating for the neurologists. I wonder if they note how many times my answers have changed. 

Here they are, the questions that always stump me…   

Did you ever have a headache before this all began?

A simple yes/no question, right?  But…who can say no to this question and still claim to know what a headache is?  Hasn’t everyone had a headache? Hasn’t everyone bumped into a wall, or crawled under a table only to forget about a low crossbeam?  Am I naive to think that headaches are part of the human condition? But if everyone has had a headache, then this isn’t a yes/no question, and it’s completely useless to ask.  So I must be wrong that everyone has had a headache, or my definition of headache is too broad. Maybe it doesn’t count as a headache if you hit your head? But then what do we say about concussions?  Concussions are certainly a headache worth noting.  

Have you had a headache before?  Are you sure the headaches you’ve had count as headaches?  

If you’re doubting yourself, now you understand how I feel every time I get asked this question.  I used to answer “No,” because I couldn’t recall any specific headaches I’ve had, but then upon realizing I know what a headache is, I changed my answer briefly to “Yes,” and then I changed it again to “I think so,” but now I’ve settled on, “Well, I’m sure I’ve hit my head on something before, which usually hurts, and my jaw muscles used to ache before I got braces.”  It’s easier to let the neurologists do the interpretive work.  

(Shout out to my friend Austin, who has spent a lot of time pondering the conundrum of subjective realities, such as headaches.)

How would you describe what your headache feels like?

I don’t know, it just…aches?  Is it ok to say that a headache feels like an ache in the head, or do they want something more descriptive?  I know some people have pounding headaches, or throbbing headaches, among many other varieties, but my background headache feels completely unremarkable in every way.  I could say it feels like someone punched me in the head, but I’ve never been punched in the head, so I don’t know if that’s true.  I’m most tempted to say that it feels like a rhino is sitting on my face, except my eyeballs and lips and nose and chin are still in tact and somehow only my skull is affected by the rhino butt.  I wonder if this is the sort of detail they want from me.

For my stabbing headache attacks, I think I’m supposed to say that these feel like getting stabbed in the head.  But again, I have never been stabbed in the head or anywhere else in my body, much like how I’ve never been sat on by a rhino, so I feel dishonest claiming that I know what it feels like to be stabbed.  

So far, no neurologist has been frustrated by me describing my headaches as aches and stabs, so I guess I’ll stick with that.

Do you get ice cream headaches?

No matter how hard I try, I find myself constantly flip-flopping between yes and no on this question.  But it’s not my fault! It’s because whenever a neurologist asks me this question, I ask them what an ice cream headache is, and I get a slightly different answer every single time.  So an ice cream headache is either a headache some people get when eating ice cream, a headache some people get when eating ice cream too quickly, a headache some people get when eating anything cold, or the same exact thing as brain freeze, which I’ve always defined as what happens when you drink a slushie too quickly.  Which of these is it?? I still don’t know. I’ve never gotten a headache from eating ice cream, not even once. But my record indicates I get ice cream headaches because I’ve chugged a slushie before and got brain freeze, and that settled it during my first ever neurology cross-examination.    


The doctors I see keep extensive internal notes about me, which I usually find handy because they’re all in the same system and able to read up on the latest from Natalie’s great headache saga.  But the internal notes thing can also freak me out. For example, a doctor asked me last month how my dog, Donut, was doing. It was very nice of her to ask, except that this was our first time meeting each other and I hadn’t mentioned my dog, which means some other doctor wrote about my dog and included his name in the internal notes she was reading.  Talk about lack of dog anonymity! If the doctors have written so much about my dog, I wonder what they have on my husband.  And I wonder how many times they’ve written, “Natalie does not seem to know what a headache is or what it feels like. She has clearly lost her marbles.”

Not-So-Holy Guacamole

For Cory, there is nothing better than driving across Nevada and listening to podcasts for the entire day.  I like roadtrips, too- not as much as my husband does, but certainly more than my wimpy dog does. It’s usually the three of us on a roadtrip, like the one we took to my parents house for Christmas last year.  But that one wasn’t like the other roadtrips…it was the first roadtrip with migraines in tow.  

It sounds simple, because there’s nothing but time to sleep on a roadtrip, and our car has nice seat warmers which encourage curling up for a nap (the dog certainly takes advantage of them).  There was, of course, the fact that my migraine flares and stabbing headache attacks are food triggered, but no big deal- we planned beforehand to pack a cooler with non-triggering snacks. We also meticulously planned our meal breaks ahead of time.  Cory researched ingredients and made a list: Chick-fil-a near Reno, some place in the middle of nowhere Wyoming, etc. 

And then it came: a bad migraine that delayed our trip.  So we changed our itinerary, our hotels, our driving schedule, the meal plan disintegrated, and three days later we were sitting in a parking lot of a Wendy’s in Nevada, arguing about buns.  Like, hamburger buns. Cory claimed they contained whole wheat flour, while I was adamant they contained regular wheat flour. But what was the point of arguing? We were in the middle of Nevada, where the options are literally a hamburger with a bun or a chicken sandwich with a bun.  And fries.  

Dietary restrictions are not a new thing for me.  Before getting migraines, I had all sorts of stomach problems that kept me from eating certain things.  But my migraines aren’t the “average” migraines, which can be triggered by things like chocolate, red wine, and aged cheese.   When I first got my migraines and soon after found myself in the hospital, it seemed like eating literally anything triggered a stomachache followed by a stabbing headache attack (a.k.a. Snape).  If I ate a meal, I got headache attacks.  If I didn’t, no headache attacks. This seemed like a problem to me, but the neurologists in the hospital were baffled by my findings.

Thank God I also have a GI doctor, who is amazing and concerned about the food triggers behind my headaches. I actually went to this GI doctor first, when I started getting migraines, because I didn’t realize neurology was a thing. And she has stuck with me this whole time!  While I was in the hospital, she suggested I try to calm down the headache attacks by following the low FODMAP diet, which is a diet used primarily for dealing with IBS.  It’s a difficult diet to understand (I need help from an app to know which foods are in each of the six groups), and it’s downright impossible to follow while in a hospital, but this diet has made better sense of my food triggers than anything else. When using low FODMAP, I discovered that I’ve triggered my worst headache attacks by eating apples, sweet potatoes, avocados, coconut milk, almond milk, apricots, and whole wheat flour, and each of these foods is in either the “O” or the “P” groups in the low FODMAP diet.  I filter by these two groups in my app to know what other foods are likely to trigger headaches…there are many potential trigger foods, and right now, I’m avoiding most of them to play it safe. That adds things like cauliflower, beans, corn, almonds, cherries, blackberries, stone fruits, and green peppers to the list of foods to avoid. Ironically, I can still eat orange, red, and yellow peppers.  That’s how extremely confusing the low FODMAP diet is!

But the low FODMAP diet doesn’t take the more “average” migraine trigger foods into account, nor does it integrate the foods I couldn’t eat before.  So that means I am working with three different sets of dietary restrictions- a food avoidance trifecta! Needing to avoid so many specific foods made our roadtrip feel like a minefield.  

So, roadtripping is not as simple as it used to be, and the joy of spontaneity in traveling is sucked dry by the need to cross-check every meal against a list of Do’s and Dont’s.  But I felt even worse for my family over the holidays, and I likewise feel bad for friends here who try to cook for me. Just two days ago, some of our dear, long-time friends offered to bring us dinner every Friday.  “What an amazing offer!” I thought, “I’ll just shoot them a quick summary of my dietary restrictions so they can cook for us.” So I did. Then I realized I forgot something, so I emailed again. And again. Then I went to bed and remembered more things I couldn’t eat, so in the morning, I started a new email.  Then I remembered one other thing I couldn’t eat. So much for a summary…at least I’m avoiding all stone fruits, but everything else I can’t eat is a huge hodge podge of seemingly unrelated foods. I don’t have it all written down anywhere, and I though I tried to build a master list, the official low FODMAP foods are only found in the app, and the app doesn’t let me filter by FODMAP category…so even now, no one (including me) knows exactly what I cannot eat!

If this sounds like a headache to you…you should really try having an unremitting headache, and that will teach you what a headache is.  But it is certainly annoying! Dietary restrictions have been, in fact, harder to accept as real than my headaches on a day-to-day basis. I can’t trick myself into thinking I have no headache, but I do occasionally think, “That avocado you ate last month…wasn’t it tasty??  Didn’t you love it? GUACAMOLE. Nothing will happen if you eat guacamole. Your body knows it’s guacamole and makes an exception, because GUACAMOLE.” This is what I told myself two days before our roadtrip, not believing that anyone could possibly NEED to avoid avocados, and especially not me.  This led to the guacamole of great regret, which in turn led to the whole wheat flour argument in the Wendy’s parking lot. And this was the beginning of me slowly learning to accept my dietary restrictions. I will try reintroducing more foods and retrying some of the past triggers someday soon. But for now, I am very busy being headachey, and guacamole is not worth spoiling an entire day with a migraine.

But!  There is some comfort in all of the food restriction craziness: lots of unhealthy junk foods are untouched by the voracious demands of my “Do Not Eat” list. My friend noticed this as well, and brought over some delectable lemon cupcakes. I just inhaled a big cookie before finishing this blog post.  I bought a banana with it, to cancel out the unhealthiness. Cory came home with a huge slice of funfetti cake a few nights ago. I ate a scone in the middle of the afternoon yesterday. And in general, we eat lots of pizza.

Perhaps eating so much junk food is a bad idea. But I keep being told that I need to gain weight. So, in the age of keto, paleo, low sugar, low carb, gluten free and green cleanses, I say: Please pass the fries, and hamburger buns, because they are made of plain old enriched white flour, after all. You know…the unhealthy kind!

Migrainuary

The headache log is quite colorful this month!

My diagnosis is something called an intractable migraine, or you could also call it an Energizer bunny migraine.  In my case, it’s been going and going and going for four months without responding to treatments. Though that sounds bad (and it is), my experience 24/7 is that of a simple headache, not a migraine, because I’m on so many medications that are supposed to keep the rest of the migraine symptoms contained.  But various things cause the migraine to flare up anyway, like certain foods. Or lack of sleep. Or sunny days. Or skipping acupuncture. Or stepping on a crack in the sidewalk. Or breathing air.  

Many people have asked what my “average” day with an intractable migraine is like, but because I’m always on the edge of a flare up, any single day of an intractable migraine is impossible to describe.  It’s not like I have just a headache from nine until noon, then take a break for lunch, then get a migraine flare until five, then pack up my things and go home for a quiet evening. Every day is spent with me at the mercy of the migraine’s whims, and January in particular has been a month of much migraine whimsy.  In fact, half of this month so far has been spent with migraine flares, and some are worse than others. So, this post will instead give you glimpses of what the past month has been like for me, in an attempt to give you some insight into my crazy, light-sensitive life. 

My average migraine flare this month starts with either dizziness or a sudden throbbing headache or ice pick headache attack.  Within an hour or two, I am also lethargic and nauseous, and sitting in bed with a cup of tea, my phone to play music, and a coloring book.  I can be stuck in bed for days, completely uninterested in moving or eating, in the dark. I’ll leave the house only to go to medical appointments…which means I have to leave the house nearly every day.  Chronic pain is a schedule obliterator. I have three weekly appointments: acupuncture, physical therapy, and plain old therapy. On top of that, I work with a neurologist, a pain neurologist, a GI doctor, a primary care physician, an integrative medicine doctor, and an orthodontist (because even though my braces are off, they can always come up with something else I simply must do).  That’s six specialists, and each is scheduled every 4-6 weeks, meaning I see at least one of them every week in addition to my three regularly scheduled weekly appointments.  If I’m not having a migraine flare, I drive myself to my appointments, which are scattered all across the city. Fortunately, I love driving and solving parking puzzles. But if I am having a flare, and I’m lucky, Cory or a friend drives me.  If I’m having a flare and am not lucky, I have to take a Lyft. The Lyft rides are hard because you never know how smooth the ride is going to be, so I keep my eyes closed under my sunglasses and hope for the best. I don’t open my eyes when wearing sunglasses, because if the sun is behind me and reflects off the back of the glasses into my eye, it sends pain shooting through my head.

If I can’t get a migraine flare to stop, or if any of the aforementioned things occurs during a flare (I eat the wrong food, or I don’t sleep, or I step on a sidewalk crack, etc.), it turns into a monster.  The most recent one was last week on Friday night. Cory went straight to the grocery store after work, then came home and made us dinner. As soon as I finished eating dinner, I was doubled over and unable to move without feeling miserable.  My headache kept flaring to the point that I was crying out in pain every few minutes. There was nothing to do but get myself to bed, pop some pills, secure an ice pack, and wait. For the first three months, medications didn’t help at all. But now they sometimes help, and sometimes don’t.

There is one thing that always helps, though: acupuncture.  Acupuncture is the most anticipated appointment on my calendar every week, because when it comes to cool packs and needles, my acupuncturist spares no expense.  The average appointment involves six needles in the back of my head, two in the front, and ten more in my neck and shoulders. He pushes them in until the muscles twitch to release tension, which in turn flares my headache and usually makes me yell.  But it’s no pain, no gain in the acupuncture world, and there is a lot of gain to be had in my case. First off, the acupuncture treatments are the only thing that can get me instantly out of a migraine flare. If I’m having a flare during my usual appointment, or if he fits me in last minute for an extra, my amazing acupuncturist throws needles, cool packs, and heated blankets at the problem for hours.  I’ve come out feeling so great every time this happens, and so hungry.  In fact, I often go straight from acupuncture to a coffee shop to buy a large slice of banana bread and a peppermint tea (because I couldn’t eat bananas for a long time, and peppermint tea is my new vice after giving up afternoon coffee).  The second benefit of getting lots of needles in my head is the opportunity to chat with my acupuncturist. He shows more creativity than any doctor when it comes to managing pain; he’s suggested everything from snorting peppermint oil to doing things I love in order to rob my nervous system of pain sensations.  He also takes pity on my clueless-ness, me being so young and ignorant of how the medical system works. We discuss what my various specialists are telling me to do, and he helps me reason through the information and prioritize my next treatments.

This is what my month looked like, medically.  I had flares that are short, flares that are long.  I went to specialists, I spent lots of time with my acupuncturist.  But there were also a few days this month with no migraine flare and no appointments.  And those days were probably more similar to yours- they are what one might call normal days.  These were the days when I felt well enough to go outside and actually enjoy the sunshine instead of hiding from it, sometimes well enough to get out on my bike.  I used these days, or these pieces of days, to visit friends and get physical activity, to empty the dishwasher and do laundry, to write and play the piano. I also ate a lot, because food tastes so amazing when I’m not nauseous.  

I loved these days.  But even these good days didn’t feel normal, not the normal sort of normal.  I still had a headache on these days, and I still was shoving my migraine down using lots of pills.  So the good days really felt like occasional, exhausted Saturdays after weeks full of Wednesdays, and before more weeks that might be all Wednesdays, too.  Not enough time to get away from life, not enough time to really recover. But they were enough to get a taste, a reminder of what I’m aiming for- I’m aiming for these “good” days to soon be the worst days I have.  

So I’m finishing January with a whimper, not a shout, and perhaps with a migraine flare.  But here’s to hoping for better, and believing this is just a phase. And having real hope, hope that doesn’t fade when my migraine flares, is what gives me peace as I color the day away, go to my fourth doctor for the week, and do my best to enjoy each Saturday in a month full of Wednesdays.