The most terrifying night of my life

Yes. It was a migraine attack.

Few things faze me when it comes to migraine. On any given day my body suddenly will be out of my control and will fall into the grip of allodynia and maybe cortical spreading depression. Or what I believe is cortical spreading depression. Allodynia definitely is involved. Regardless, Christmas Eve I genuinely was scared for my life.

Imagine a wave slowly curling over a mountain. And as it travels across this mountain, it washes over various parts, temporarily changing the way that they function. Now imagine that this mountain is part of your brain and this electrochemical wave slowly passes over the visual cortex, temporarily changing the way that you see. Suddenly your vision has a small black dot that slowly expands until, after twenty minutes, your vision is entirely obscured by a large black blob before returning to normalcy. Then the wave crashes over the sensory cortex, and the hand begins to tingle, pricking you with pins and needles. Slowly and gradually, over the course of twenty minutes, as the electrochemical wave travels across the sensory cortex, the tingling travels up the arm until it’s completely awash with pins and needles.

The wave stops and the neurological symptoms fully reverse, guiding you into a new storm of crushing, stabbing pain and gut-wrenching nausea, of lights so bright they feel like knives piercing into your eye. Everything hurts. Your body submits to its own kind of fall out, migraine’s infamous acute phase.

While bizarre, these auras, these neurological warnings are tidy and almost predictable. You know that they will last twenty-minutes to one-hour and that they will transition to migraine’s dreaded acute phase.

MUMS though, MUMS is totally different.

I didn’t fully understand how different MUMS was from other migraine types until quite recently. I’ve always understood the concept of cortical spreading depression and how electrochemical waves travel across the brain but it never occurred to me that auras should be one at a time. They shouldn’t rush on like an avalanche (Ironically, being trapped under an avalanche’s blanket of snow is one of my greatest fears. Right up there with quick sand.).

I didn’t understand this until I learned that MUMS’ big distinction from hemiplegic migraine was that MUMS patients experienced numbness and weakness at the same time, while with traditional cortical spreading depression it is impossible to experience numbness and weakness simultaneously. I didn’t understand that neurological symptoms like weakness, numbness, and dysarthria should not take place while experiencing head pain, nausea and vomiting. I thought that was normal.

I understood that MUMS weakness was due to a disordered protective reflex related to severe allodynia but things didn’t click for a while. If you’re curious about allodynia, think of having a pain response to something that shouldn’t be painful. Something as simple as brushing your hair, feeling a slight breeze, or wearing glasses can elicit excruciating pain. Allodynia is the result of central sensitization and is symptomatic of migraine, fibromyalgia, and central regional pain syndrome. Essentially, when you have central sensitization, the body sends pain signals in reaction to stimuli that should not be painful.

My allodynia feels like thousands of fire ant bites or thousands of paper cuts. Because I don’t have the impulse to shave my head, I never thought that my allodynia was much to write home about. But of course there were signs: I almost always wear my hair down and, when it’s worn up, it’s typically a loose knot that isn’t held by a pin or elastic. Elastics and pins pull so that a singular hair strand feels like a laser hot needle is searing through the dura. Additionally, I avoid air conditioning with every fiber of my being because the slightest breeze feels like thousands of pinpricks on my legs. But still, I didn’t think that my allodynia was much to write home about. I never realized that my allodynia was severe until I saw it written in my headache specialist’s notes: SEVERE allodynia, very sensitive to touch.

Whoops. Guess I missed that one.

There’s so little available information about MUMS so I’ve had to do what I can to fully understand it, to carefully parse and unbraid it from hemiplegic migraine. Even when typing MUMS into chatGPT, it says that hemiplegic migraine and MUMS are terms used interchangeably as both migraine types experience weakness.

But MUMS weakness likely is due to a protective reflex to protect from experiencing allodynia’s pain response. The weakness also could be due to something called proprioception, a phenomenon where you cannot tell where your body is in the space around it. For me, when my proprioception and weakness is severe, it feels as though gravity is pushing down on my arms and legs and, no matter how hard I try, I cannot push against it. Or, I try to move a body part and I simply cannot. It is quite strange to experience. Bodies should body, right?

Well back to MUMS and hemiplegic migraine. Both migraine types are terrifying to experience. Both types mimic a stroke, and hemiplegic migraine patients are at a slightly higher risk of stroke. Hemiplegic migraine is well-known because researchers have been able to isolate specific gene variants, like the CACAN1A mutation, and specific symptoms associated with that mutation.

But MUMS… MUMS is a bit messier and shadier than that. There only are 4-5 papers written about the migraine subtype and just two migraine advocacy groups in the globe have highlighted it. Because MUMS attacks have associated weakness, most MUMS patients are misdiagnosed with hemiplegic migraine and therefore do not receive the aggressive acute treatment that they need.

Since learning that I have MUMS, I have learned that I need to treat during the prodrome (migraine’s first attack phase), as soon as I detect an attack coming on. And I typically need to be incredibly aggressive. No waiting to see if it’s going to be bad enough. Because if I wait too late, MUMS symptoms hit like a Bronco slamming into a brick wall, completely disabling me.

A mild MUMS attack (for me) would involve tingling, dysarthria (slurred speech), tinnitus, and mild head pain. Maybe, just maybe, it would be a bit difficult to lift my arm. A more severe attack would include tingling, dysarthria, facial paralysis, ataxia (clumsiness), and right-sided weakness (it would feel like gravity is pushing down). A severe MUMS attack would be all of that plus some level of body paralysis (I would not be able to move a body part because I cannot tell where it is or I simply cannot move it). I get other migraine symptoms as well: head pain, vertigo, dizziness, nausea, vomiting, the whole shebang. It is what it is: weird.

My attacks are so frequent that they rarely faze me. At least two to three days a week I experience some kind of MUMS attack. I’ve accepted it as just part of my life.

Once I had an attack where my entire body save my left arm was unable to move. I was bored, so I FaceTimed my best friend and then, once able to pull myself to my Cefaly, I clicked it on and hosted a Tiktok Live. Most of the time, I find my disabling attacks boring: what am I going to do when I can’t move? Listen to an audio book or podcast? Watch tv? Meditate? Usually it’s a mix of all three. When I want to spice things up, I’ll FaceTime a friend. But only if they’re really familiar with my symptoms and won’t freak out.

Then there was this past November, when the symptoms rushed in a little too quickly and my face dropped a bit too severely and I ended up in the emergency room and was admitted for possible stroke. Even then, I was 99.9% sure I was having a migraine attack.

Still, although I was almost certain, I know the importance of following protocol and getting checked out for stroke. Throughout my time there, I was calm (aside from when the Brooklyn Hospital security called the police on my service dog) and clear-headed about what I needed and how I needed to self-advocate (which honestly was quite a lot).

And then there was Christmas Eve. I’ve never had an attack that truly gut-punched terrified me, not until Christmas Eve.

The day began with a sinus migraine. Sinus migraine is another little-known but common migraine type that mimics a sinus infection. 90% of self-reported sinus headaches actually are sinus migraine. Little did I know at the time, but the majority of my twenties were spent in the grip of chronic sinus migraine and medication adaptation headache from Tylenol overuse. It’s likely why my migraine disease is as complicated as it is today.

As always with sinus migraine, my pain levels were high and my emotions were a mess. I should have known then and there that a doozy was on its way but migraine symptoms can be really confusing: are my emotions messy because of migraine or because I’m still on my period? or is it because I’m alone on Christmas Eve? See? It’s difficult to know!

By noon, vertigo, nausea and dizziness settled in. I took Nurtec and Reglan. I should have taken this as a sign to stop and rest, but I had so much to do. I had to finish running errands and wrapping gifts and getting supplies for Christmas Day. I had to pick up ingredients for a Christmas Day cocktail. So I swallowed my pills, grabbed my granny cart, and marched ahead.

At 3pm, the roads swirled around me. It felt as though I were tripping, but I had not taken any hallucinogen. My ataxia was severe. If a neurologist happened to walk by me, they absolutely would have studied my gait because it was weird af. I hardly could walk; I likely looked like one of those decaying and broken zombies from The Walking Dead. But Charlie pulled me along and we trundled on to the liquor store where I mildly attempted to convince the store’s manager that there was nothing wrong with me. My friends: I was unable to open my mouth or clearly pronounce a word. And yet I was determined to purchase a bottle of ancho reyes chile ancho liqueur.

With errands done, I commanded Charlie to take me home (truly her greatest task) and she took the reins and guided me home. Whenever I give her this command, I’m always curious which route she’ll take. I give her full control because I’m truly interested to know how well my 8lb dog knows the neighborhood.

This dog can navigate bougie Brooklyn no problem. She took us on a route never before taken (meaning: she had been down all the streets before but never in that combination). Her route was the most direct and it got us home.

I unpacked my granny cart, dropping the cheese into the bins and the crackers onto the countertop before collapsing into my desk chair where I could administer Trudhesa, an intranasal DHE.

By that point I could not move either side of my mouth and I could not speak clearly at all. But still, I wasn’t scared. This all was part of the usual game.

DHE is an old school migraine-specific medication that turns on serotonin receptors to stop the process of migraine. If used intravenously, DHE can begin treating migraine within fifteen minutes. Trudhesa is like the Bentley of migraine medications. It has an extremely fancy intranasal delivery system that shoots the DHE farther up into the upper nasal cavity for speedy distribution and activation. According to Trudhesa, it can work in as quickly as 15min and, because it’s DHE, it can be effective late in a migraine attack when most medications (esp triptans) lose their magic.

Not going to lie but I was incredibly out of it. I cannot confirm whether or not I took Trudhesa according to proper instruction (even though I’ve taken it many times before). And sadly, Trudhesa did not kick in after fifteen minutes. I laid on my couch to meditate, and, after a few minutes, realized that I was completely unable to move, save my left forearm and left hand.

When I first laid on my couch, it was in the most inconvenient way. And so I was stuck there, crooked and somewhat sideways, with one leg on and one leg off, my right arm propped on a pillow and left arm carefully holding my phone. Fortunately a pillow cradled my neck because, when I get like this, my neck cannot support my head.

I began my breath work, as outlined by the NYU clinical trial that I’m in: four seconds inhale, six seconds exhale. I did that for a while and focused on the flowers on my desk. Two roses turned into four and then begin to swirl in front of me, like a pinwheel. The walls swirled and melted into the floor. The TV swerved on its side and slid up and down.

I checked my heart rate: 95. Good sign. Stay calm, I reminded myself.

So I focused on my breath: four seconds in, six seconds out. I could not move my right side. I could not move my left leg. I could not adjust or move my torso. I tried to move my lips: nothing, zero, zilch.

My mouth was wretchedly dry. Cotton mouth is one of the most frustrating POTS symptoms, which is yet another reason that I almost always am sipping on something or sucking on a mint. I tried to swallow.

I could not swallow.

That was when I began to panic. All of my other symptoms had happened before: vertigo, dizziness, paralysis, droopy face, ataxia, weakness, dysarthria, tinnitus, etc etc. Those all were common and somewhat common symptoms. The severe facial droop was new-ish and has been progressing since the fall. But still, it had happened before.

But dysphagia? Dysphagia was new.

I used to have a pretty solid emergency plan in place. My best friend always has been my emergency contact and then an old neighbor was my back up. This time both were out of the city for the holiday (and my other good friend who lives a block from me was out of state), so I had to reach out to people who weren’t as familiar with my protocols.

I texted both my cousin and friend: If you don’t hear from me within an hour, call me. And then: Here is the code to my apartment.

At that moment, I had two fears: 1) I was having an aneurysm or stroke and was going to die 2) my cat was going to eat me for dinner.

I never want to stress my cousin. Her plate is incredibly full and I don’t want to contribute to it. So I protect her from much of what goes on with me medically. And things are medically messy at the moment because I’m in the middle of three possible new diagnoses, including ocular myasthenia gravis which can affect your ability to swallow. That said, my cousin knows that I have severe migraine and she knows that my symptoms are atypical but I never ask her for help.

She responded and asked how I was doing. I warned that I likely wouldn’t be able to make Christmas Eve dinner, and I apologized for that. And to be quite honest, I felt horrible about missing it. I thought about how much work and effort she had put into the evening and how, not only was I missing the night but that I was adding more work to her plate. It’s rare for a chronically ill person to not feel guilty about the impact their illness has on others.

She asked what my symptoms were like and I said that I couldn’t move except for my left hand. I said that I couldn’t swallow. She asked if I needed an ambulance and, after a little thought, I realized that I most likely did need an ambulance because how on earth would I get to the emergency room otherwise? I could not move at all.

Coordinating EMS was something. I texted my cousin my address, as well as the keypad code to enter my apartment (thank everything that I don’t have a lock and key but instead have a keypad). Then I reminded her that I could not talk or move so that EMS would need to get themselves into my apartment. I reminded her that I lived in the garden apartment. I reminded her that Charlie, as my service dog, had to come with me.

This all was done while carefully balancing my heavy phone in my left hand and keying the letters in with just one thumb, one by one. I couldn’t drop the phone or else I would lose my only way to get help and communicate.

Minutes later I heard the ambulance and EMS. Of course they went to the parlor floor. I texted my cousin to let her know they were upstairs. I tried my best to scream but just a hum came out. So Charlie started to bark. Charlie barked so much that the EMS heard us.

Once they came in, I was able to speak just the slightest. It was like trying to speak with your mouth closed. I explained what was going on and did my best to explain MUMS because no one outside of a corner of the migraine world knows what MUMS is.

I explained that I was 99% sure that this was migraine but that I needed help because I couldn’t move and I couldn’t swallow. I told them what acute medications I had taken, including time stamps. I gave them my most recent heart rate (95bpm). They did a quick blood sugar test and checked my blood pressure: 154 over something. That was high. I explained that I couldn’t go to Brooklyn Hospital because they don’t have DHE and that the only thing that likely will help me at this point was DHE. I explained that I couldn’t go to NYU Cobble Hill because they don’t have an MRI and, in the event the neurology team wants me to have an MRI, I need to be at a hospital that has one.

One of the EMS disappeared in my bathroom so that they could tally all of my medications. “You really take all those meds?” she asked.

Of course it was time to go when my cat leapt onto my chest and refused to move. She’s 18 years old and light as a feather due to kidney disease and still she made herself as heavy and cantankerous as her aged body could. The EMS hoisted me into the chair, wrapped me in my blanket, and placed Charlie onto my lap.

Charlie stayed on my lap as they wheeled me out of my apartment and lifted me up from the chair and into the gurney. She stayed on my lap as we rumbled through Brooklyn, en route to NYU Bay Ridge where I knew they would have DHE and I knew they would have an MRI. She stayed on my lap while I texted my friend who is a headache specialist and asked her to send me the write-up on MUMS. She stayed on my lap while they hoisted me out of the ambulance and pushed me into the emergency room. She stayed on my lap while surrounded by EMS who were absolutely gobsmacked to see a tiny service dog with giant butterfly ears.

I’m luckier than 99.9% of the migraine patients. Somehow, in the course of my 9 years of chronic migraine, I’ve situated and educated myself so that most ED staff listen to me. I’ve become so involved in migraine advocacy, taken enough advocacy training, read enough studies, worked in the space long enough so that I can truly self-advocate.

There are times when it’s more challenging (like when I was at Brooklyn Hospital) but NYU Bay Ridge listened to me. The Neuro PA asked me to explain what was going on and I walked him through MUMS and how I knew this wasn’t hemiplegic migraine or stroke (1: numbness and weakness at the same time, 2: some symptoms were remitting).

Working for a neurology clinic gives me these little sound bytes where I’m able to explain things to medical staff where they take me seriously and treat me as an equal. While in the CT room, they did a neuro exam. They all were perplexed by my give-way weakness. “See?” I said. “That’s the difference between MUMS and hemiplegic migraine. I can’t lift my leg but it doesn’t suddenly drop when you lift it. It’s super weird. I can’t tell where my leg is in the space around it.” Rather than dismiss me, they were curious and wanted to learn more. Sometimes it’s like I’m a medical dummy that educates at the same time. Truly it’s a gift (flips hair).

As they wheeled me to my curtained corner, I heard the Neuro PA tell the charge station, “guys. I’ve got a weird one for you. One I’ve never seen before.”

Y’all. I’m special. Like really special. MUMS is a great Christmas Eve ED party trick, let me tell you. (again flips hair in the manner of Alexis Rose)

I messaged my medical director and asked him for the migraine cocktail protocol measurements. Within seconds he responded and I shared it with the neuro PA who couldn’t wait to learn the best protocol for a severe migraine attack.

I gave the PA the write up on MUMS so that he could better understand it. He was fascinated and bewildered to discover something new about something as dull as migraine. He diligently wrote down the name and passed it along to the ER doctor.

Finally, I got plugged into the IV and Toradol was pumping into my veins. They asked me to pee. “Y’all. I’m sorry to disappoint but that may be difficult since I can’t move anything but my left hand. Can you test my bloodwork instead?”

Yeah self-advocacy. Go me.

Suddenly I heard the man at the bed next to me stand up. I couldn’t see him because my head still was awkwardly situated in a neck brace the EMS team fashioned out of foam and duct tape. Charlie diligently lay in my lap.

In a thick, Russian accent he began: “Excuse me but I heard you were having a migraine and I used to get awful migraines almost every day for 2 months. It was just horrible. I tried everything to cure it and sometimes I couldn’t even see clearly. It was a nightmare you can’t even imagine how awful it was.” Still unable to move, I continued to stare at the ceiling due to how my neck was rigged in the EMS’ neck brace. He continued: “And finally I found the cure, you’re never going to believe it. I started Feverfew and suddenly my migraines stopped and I was cured. So maybe you could try that.”

Oh here we go.

And there I was, unable to move aside from my left forearm and hand, neck wrapped in foam held together with duct tape so that my head didn’t keel over, and my mouth barely able to open. Because of how the neck brace was situated, I only could stare straight up at the ceiling, unable to see what was going on around me.

“Thank you so much,” I began. “Migraine is a spectrum neurobiological disease.” He tried to interrupt… “No-no. I’m not finished. Please listen. I appreciate your concern and I’m so happy that you found something that put you into remission. But remember that migraine is a spectrum and, as you can see, I’m on the severe end of the spectrum. So severe that I currently cannot move my body. I’m so happy that Feverfew helped you but as you can see, I need much more complex treatment than that since I can’t even swallow. But I’m happy that feverfew was helpful for you.” (emphasis on the you)

“Ok yes I see,” he began. “I’m going to the cafeteria. Would you like some chicken?”

I thanked him but declined the offer.

It is estimated that much of migraine’s misinformation and stigma comes from those who live with the disease, particularly by those who have episodic migraine and do not fully understand that they have a neurological disease.

The reason it is so difficult for people who have episodic migraine to understand their disease is due to its interictal phase, which is when most people experience zero migraine symptoms. The interictal phase is the phase between two migraine attacks. For those with episodic migraine, it is a time of peace and quiet. A time to have fun, let loose, and forget that you have migraine.

(For those with chronic migraine, the interictal phase is just another phase of dull head pain and neurological symptoms like tinnitus, pins and needles, light sensitivity, et cetera.)

Episodic migraine’s symptom-free interictal phase makes the disease seem like it’s a series of random events that just happens because you ate the wrong thing, got too stressed or slept poorly. But migraine isn’t punishment for bad behavior or the result of not getting the proper supplement. Someone has migraine because their genes say that they have migraine. And when you have migraine, your brain is sensitive to specific triggers.

Misinformation and misunderstanding happens because people want a simple answer to something that is incredibly complex. And many with episodic migraine want a simple answer and quick fix to something that is this disabling and painful. So it’s easier for them to believe that migraine is a sodium deficiency or nutrient imbalance than chronic neurological disease. No one with migraine doubts how debilitating the disease is, but tens of millions contribute to falsehoods about the disease.

And because migraine mostly is invisible and unable to be detected by a simple blood test or brain imaging, most medical professionals also contribute to the disease stigma.

I once went on a date with a family practitioner who told me that he doesn’t even try to treat migraine. As soon as he sees a migraine diagnosis, he automatically refers the patient to a neurologist. He said that migraine terrified him because it was so weird and complex.

We need more doctors like him, doctors who recognize that migraine is not simple but is an enigma.

But it’s rare to find providers who recognize that migraine is a dysfunction of the nervous system. Typically (even on Christmas Eve), most medical providers will say something to the effect of, “don’t worry. I understand migraines. I get migraines myself and even have to take a triptan when it gets really bad. I know what you’re going through.” But they never do.

And honestly, when I hear that attempted camaraderie, I begin to worry because it is obvious to me that they have no idea what migraine is, even if they live with the disease. Only six hours of medical school is dedicated to migraine, despite it being the second leading cause of global disability. Just six percent of a general neurology fellow’s grand rounds is dedicated to migraine.

So little time is spent on the second-leading cause of global disability that most medical practitioners imagine that a patient’s migraine attack would be just like theirs. When that isn’t the case at all. Migraine is a spectrum. The reality of this truly hit home when I started searching migraine within the medicine subreddit. It was most terrifying to see how little the neurologists understood the disease and treatments.

Migraine is so individual. And typically it is only those within the insular chronic migraine world who understand how individual migraine and its treatment is.

I’ve accepted that my migraine type and its attacks are beyond the norm. I’ve accepted that I likely will have at least one day a weak interrupted by dysarthria, associated weakness, ataxia and other levels of disability.

But acceptance doesn’t mean that I’m jaded to the point of giving up. I’m constantly interested in and curious about how I can improve my quality of life. I’m determined to learn how I can decrease the severity and, for lack of better words, weirdness of my attacks. I’d really like to not spend another Christmas Eve in the hospital because I’m so immobilized that I cannot swallow.

So next week I’ll return to Jefferson in Philadelphia so that I can better understand why my attacks have shifted and progressed like they have. I want to understand why my body does what it does. Is this common for MUMS? Does this happen with MUMS? Do other people with MUMS experience the phenomena where they cannot move their entire body? Where they cannot move their mouth or swallow? Or, even though it responded to migraine acute medication, is this indicative of something else? What can I do to better manage and mitigate these symptoms?

When it comes to my health, I’ve always been a bit of a problem solver. I’d rather map out the necessary steps and do what’s needed than worry about the what ifs. I’m fearless when it comes to meds and treatments, despite having a low pain threshold.

In a way, I disassociate from the reality that this is happening to me and I just think “Ok what needs to be done. How can I improve quality of life and long-term outcomes.” What can I do to just get through it. How can I get out of this mess? Just tell me what I need to do, tell me what I need to understand, and I’ll do it, I’ll study it.

And then, as though nothing has happened, I’ll return to my other life. The life where I pretend that I don’t have migraine. Which is what I did Sunday night when I returned home from the ED: I tidied up my apartment, finished wrapping presents, set up things for Christmas morning, and then - once everything was just so - I went to bed.

**

Things I’ve been thinking about:

80s and 90s country

Rubber boots for dogs

Starburst wallpaper

My gym (oh my god)

Progressive Muscle Relaxation

Kule sweatpants

Nozin Nasal Sanitzer

**

Ok. So one of the above links may be an affiliate link but let’s be real: my life is absurd. If I receive a commission from your purchase, it will go toward an impossibly high tower of medical bills.