The Wacky Symptoms I Experienced During My Two-Week Migraine
It was a sunny July day, and I was feeling good. Maybe a little tight in the head, but no different than most mornings. My friend texted to confirm I was joining her for a beach party down the coast. “Yaaasssss!!!” I responded exuberantly. June had been a good month for me (only three isolated attacks!) and I was hopeful July would be the same: less attacks, more good days. I was having fun and living life.
The afternoon started strong: my morning workout was on target, my head felt steady and there was a zero chance of rain. My bag was packed chock-a-block filled with water, migraine diet-safe snacks and my emergency kit. I was ready, excited, pumped, motivated. We corralled in her car and hit the Pacific Coast Highway, heading south. I rolled down a window and felt the salty air, silently celebrating that the breeze didn’t trigger an allodynia attack. I was so close to feeling normal.
We arrived at the party, set up our beach towels and danced across the piping hot sand. The water felt cool and refreshing. I floated in the waves and could not remember a time since my chronic migraine diagnosis when I felt more free. My friend and I discussed the future: her new apartment, my job search, activities we wanted to do in the forthcoming month. Oh yeah, look at me making plans.
We returned to our beach blankets, shook the water from our ears. There was a DJ and the music was pumping. Too loud for my taste but recently I had begun to better handle triggers like that. Just a few weeks before I had been to Disneyland and managed a full day there! I was confident the thumping bass would be no issue. I shrugged off the wafting cigarette smoke. I drank some water and reapplied my SPF.
Then I started to feel very shy. Like debilitatingly shy. This was a chatty group and I found it difficult to spark up and maintain conversation. The introversion was sudden and alien. My friend tugged at my arm and invited me for a group photo. There were about 60 or 70 of us at the beach party so we all hovered near a volleyball net and looked up at a camera hovering above us on a drone (so sci fi!). Suddenly everything felt off. My peripheral vision began to blur. My legs began to tingle. My friend was busy talking to someone so I quietly tapped her on the shoulder, “I-I-I-I-I….” Aw geez, here comes the stuttering. Here comes the aphasia.
Luckily my friend recognized my attack symptoms and guided me back to our blankets. By the time we sat down I couldn’t feel my legs, and after a few minutes I couldn’t even move them. Words sputtered and stumbled out of my lips. I took a ginger capsule and smelled peppermint oil. A couple sitting next to us lit up a cigarette. “N-n-n-n-n-n-o no-no-no-no sm-sm-sm-smo-smo-smo.” My friend leaned over and asked them to move.
Somehow, within minutes, I had launched into a massively vicious migraine attack with brainstem aura. Everything felt off and I had no control over my physical self – this is what my wacky migraine attacks do: they render me physically useless. I kept trying to wiggle my toes but was unable. So I sat there, resigned to temporary paralysis while the rest of the party thumped on. At least I came prepared. I had ear plugs and a triptan and medical marijuana and naproxen. I could get this under control. Or at least I could pretend I had it under control. Fake it ’til you make it.
30 minutes passed and I still couldn’t speak. So I typed messages into my phone and maintained conversations through my friend. I drank more water and practiced circle breathing, all while mentally planning an exit strategy. I don’t know how best to describe my leg paralysis except that no matter how hard I tell my legs to move, they just won’t. I’ll stare at my toes, willing them to wiggle but find it impossible. Throughout this, my legs are overcome with the strangest sensation of what can only be called warm fairy tingles: a light dusting of neurological annoyances, like someone is tickling you with a feather duster that’s also rigged up with slight electrical sparks. Everything tingled uncomfortably. Finally, after another 15 minutes, I could wiggle my toes. I tapped a message into my phone and passed it to my friend: “think I can skedaddle. will you help me back to the house so I can get my things and request a Lyft?”
This march back to the house greatly resembled “Weekend at Bernie’s.” There we were: dressed in our beachy finest, hobbling back to a bungalow not three blocks from the beach. And while I could wiggle my toes, I still couldn’t support my weight – so my legs moved pellmell under my body, like a puppet whose strings are acting a bit wonky. We stopped on a bench for a moment. I still couldn’t speak. My legs felt like a tingling tonne of bricks. My mouth only could produce a stuttering word salad so I continued to type messages into my phone. The man sitting next to us asked if I needed an ambulance (this wouldn’t be the last time during this specific attack that a good-intended stranger offered to call an ambulance on my behalf). My friend and I finally waddled our way up the hill to where my remaining belongings were stored. I sat on a stool and tapped in my Lyft request. Five minutes. I tapped in my usual warning: “Hi. I won’t be able to speak. Please do not be alarmed. I’m fine.”
My Lyft driver pulled up and was ready to help. After my friend explained a few things to her, we buckled up and started our drive back to Santa Monica. Halfway to LA, I texted my neighbor and explained I would need help getting into the building. “Hi – I’m having a bad attack and my legs aren’t working. Can you help me into the building? I won’t be able to speak so don’t let that alarm you.” I caught my reflection in the mirror. I had serious migraine face. My mouth had begun to assume its drooping position, my eyes wouldn’t focus. Man I hate that face. It looks soft and slightly out-of-touch. Gone were my sharp cheekbones and clear eyes, in replace was my effing migraine face droop. Soon after my neighbor responded that she would help me into the building. I let her know I was around the corner and she confirmed she would meet me at the door.
Again, my legs weren’t behaving. It’s like having two damp noodles connected to my body – they’re there but they simply don’t want to support weight or do anything constructive. I strapped into my backpack and lugged my arms around her shoulders. We had another “Weekend at Bernie’s” moment. I kept trying to thank her but all I could muster was a th-th-th-th-than-than-than-thank-thank. I also was worried about messing up her hair. She has really, really beautiful hair. Soon enough we made it into my apartment where I was able to get around by butt-scoot. I felt comfortable in my apartment, safe and secure. I settled into my couch and prepared for a quiet evening dedicated to calm and recovery. I meditated for at least 15 to 20 minutes before diving into my latest Netflix binge. Surely I would be OK by next morning.
Oh boy was I wrong.
When it comes to migraine, society is taught that symptoms are limited to head pain, light sensitivity and maybe nausea. What most people don’t understand is how complex this neurological disease can be. While this attack had very little pain (at its peak, pain was at a five or six), its intensity was the most severe I ever had experienced. These complex attacks make me feel utterly helpless and stuck: while I cannot speak or walk, often my brain still is alert, agile and unchanged. So I’m trapped in a useless body, just waiting for time to pass. And man did it eek by.
Unfortunately, we’re so conditioned to think a migraine attack is relatively short-lived (and for some people, it is) – perhaps it’s a bad afternoon or at worst a full day. But the reality is that many people experience status migrainous, which means a severe attack happening for more than 72 hours. Before getting my migraine cycle under control, I was trapped in a status migrainous continuum.
My migraine attacks never have been tidy or organized. They rarely come with clear warning signals and they don’t follow the stages cleanly outlined on the American Migraine Foundation website. Even my neurologist admitted my cycles were rare and complicated, to say the least. Typically an attack happens suddenly, with vicious and reckless abandon, and can drag on for days if not weeks. Since I started Botox and a ketogenic diet (and switched up my meds), my attacks had decreased in duration but they rarely make sense.
Still, as time passed, I’ve discovered that stuttering and leg symptoms precipitate one of my wacky attacks rather than a classic (crawling ants – or head allodynia) or vestibular migraine attack (face tingles and partial blindness). But even with all this knowledge, I still don’t know if I experience post-drome, and typically my warnings happen instantaneously along with the actual attack.
I awoke next morning exhausted and extraordinarily dizzy, like I had a tremendous hangover and was battling a severe case of the spins. As I careened into my bathroom, I tried to say my dog’s name but all I could muster was Fr-fr-fr-fre-fre-fred-fred-fred-fred in staccato repetition. Well poop. It’s still kickin’. I tried taking Fred on an early morning walk. My legs felt weak and wobbly, like a baby giraffe trying to tuck down for water. Still, I was determined to keep to my routine and continue moving as movement, outdoor habituation and endorphins can be incredibly important for both chronic migraine and fibromyalgia.
Fred and I did our usual morning walk to the ocean and back. We walked slowly but with purpose. When I returned home, I ate breakfast, meditated and took more ginger. I finally took a triptan, something I reserve for my worst attacks. Combining it with naproxen, I felt confident that this bad boy would be gone by nightfall. After lunch, Fred and I began our walk to the market.
Dogs are fascinatingly perceptive beasts. Ever since having migraine with brainstem aura, my dog has intuited my worst symptoms and accommodated them as best as his six pounds let him. I trust him so much that, after saying his special command, I’m able to close my eyes as he guides me down the street. Halfway to the market, I started feeling even funkier. My hands started to shake and then my head. Before I knew it, I was on the ground convulsing. Fred stayed by my side throughout. Several passersby asked if I was OK and I was able to hand them my phone note explaining the situation. It took around 20 minutes for the convulsions to stop. I regretted pausing at a spot that smelled so strongly of dog pee. Eventually we made it to the market where my little dog slowly guided me down the aisles so I could get my few basic necessities: vegetables, chicken broth, chicken, hemp milk. And soon after, we were back in a Lyft headed home.
By Tuesday the attack was no better. I had stuttered my way through Monday’s talk therapy appointment, stumbling over simple words and phrases. As usual with my stuttering, tears streamed down my cheeks – a common response not due to sadness but to utter frustration. I just want to get my words out but cannot.
Tuesday afternoon was Botox day. I so anticipated seeing my headache specialist (I love when she can see me at my worst because it sheds clarity on my migraine’s complexity and severity) and I really wanted her to see me in this state, despite all of my recent progress (I love reporting good news to her too because that’s equally constructive information). Ironically, she said this was a good sign. “An attack so close to Botox day means it’s really working for you. My patients who get the best results from Botox typically are the ones who have a severe attack shortly before they’re due for their appointment” I took this as a good sign and asked if we could schedule sessions at 11 weeks rather than 12.
I typically struggle with Botox (thanks to a severe needle sensitivity due to fibromyalgia) and that day was no different. By the third injection, I was in full convulsions. A procedure that typically takes five to 10 minutes was far exceeding that. Despite taking a Zofran before the appointment, twice the nurses had to carry me to the bathroom so I could vomit. My legs simply wouldn’t bear my weight. Finally, at the end of Botox, my neurologist asked if I had ever tried DHE, an old-school injectable used to abort migraine (despite previous beliefs, studies have shown that DHE is safe for patients with brainstem aura). Man did it hurt. I puked again.
Perhaps there was an hour or two of relative relief. But that really was the extent of it. After that, the migraine returned to its original viciousness. And continued for two full weeks. During this time I had two job interviews, several bogafit classes, countless meditation sessions and many disastrous attempts at making ketogenic donuts. And, while my workouts were strained and brief, I rarely skipped going to the gym. Because of my fibromyalgia and vestibular migraine, it was imperative I continue my gym workouts so I wouldn’t reignite my vestibular symptoms (by overly habituating to my apartment) or provoke a fibro flare-up (by returning to the gym after a prolonged absence). Some days I managed OK. Other days my gym manager would keep watch while I raised my arm, signaling I needed assistance off the bike. On one of those days, I once again erupted into convulsions and a well-meaning bystander insisted on calling an ambulance. Once again, we convinced them I was OK (actually, the words were “Girl, I got this! She’s OK. It’s just a migraine. It’s all good.” The irony of just a migraine didn’t cease to amuse me or my gym manager who also has migraine).
Several days later I started my first steroid taper. Man I love dexamethasone. I love how it sedates my migraine and fibromyalgia symptoms. Suddenly I was bursting with energy and strength. I had returned to my baseline! My workouts felt strong and centered again. My voice was back. My legs were sturdy and stable. But soon enough, the taper ended and my symptoms returned with its original viciousness: stuttering, ataxia, leg paralysis. I emailed and called my specialists at UCLA who in turn brought me in for an emergency appointment. I explained I had scheduled a crucial job interview and I could not expose my migraine symptoms to them. “Pain? I can hide. Dizziness? I can ignore it. But I can’t hide aphasia or leg paralysis. I’ve got to get this under control at least so I can get through this interview. I need this job. I want this job.” And so we reviewed my treatment so far (one naratriptan, two naproxen, MMJ, ginger, exercise, meditation, DHE and dexamethasone).
My specialist reviewed my file and saw where I had benefitted from a toradol injection during a UCLA ER visit back in January (see? this is why I keep all my care under one hospital center roof – but that’s another story for another day). I hardly could speak. So again I communicated via my phone, using notes and the Migraine Buddy app. This time they wanted to try toradol. They explained I was experiencing lots of inflammation which is why the first taper was so effective. If the injection didn’t work, they gave me a back-up script for another dexamethasone taper to start the day before my big interview. Again, the injection stung like a wasp. My arm seized up and my body shook. I tried to stand so I could leave my appointment. Unfortunately my legs would not support me. Every time I tried to stand, my legs collapsed and I fell haphazardly into the chair, once onto the floor. I tried again and again, falling every time. Finally, a nurse and my specialist helped me into the waiting room where I sat for another 90 minutes until I regained feeling and strength in my legs. I eventually wobbled out of their headache center and onto the Big Blue Bus.
Toradol helped. Yeah, the injection hurt like a you-know-what, but I felt strong again. I didn’t feel as strong as when I was on steroids but I felt more level. I continued to exercise, walk and closely follow my ketogenic and migraine elimination diet (actually, I was even stricter than usual with my elimination diet). But by Sunday, the ants were crawling on my head again (allodynia, I hate you). Recognizing one of my migraine warnings, I returned home and started my backup steroid taper. I could not let this attack derail my job interview.
I awoke the next day feeling strong, confident. Testing my voice, I detected no stutter. Fred and I set off on our walk and my legs were stable. The ants were gone. I changed into my interview clothes, put on some luminizer and fake lashes (the ultimate way of obscuring migraine face), and took the bus into Beverly Hills, bringing a dozen homemade ketogenic donuts with me. The interview? I nailed it. Yes, I forgot a word here and there (attacks like this can make word recall a real drag… what’s the word for cut-cuts again? Scissors?) but no one had a clue what I had been through. Instead I appeared strong, healthy, knowledgeable and like my usual professional self.
Several days later I was invited to a second interview by phone, then for a third in-person. I start my new job next week.
As for that migraine attack? It lasted over two weeks. Yes, I’m disappointed with my July Migraine Buddy record… (June had been so strong!) but I also learned so much during that time. And I discovered so many things to be thankful for. Despite my wacky symptoms, I only missed two or three days at the gym. I maintained full conversations with people simply by typing on my phone. My neighbor and I became closer, as did my friendship with my gym manager. I walked at least 8,000 steps a day (even on days when I had leg paralysis! Every day I forced myself to set out on a new adventure, even if it was taking the bus to get more paper towels – I needed to have purpose and direction to distract me from the wacky world), visited my local farmers’ market, read four books and meditated for at least 10 minutes every day. I witnessed countless strangers help me on and off the bus, in and out of Lyfts and down grocery store aisles. Because of meditation, staying busy and going to therapy, I remained calm and content throughout those two weeks. Seriously, I didn’t once have a moment of panic. Instead I set small goals and maintained them, despite the challenges that derailed and incapacitated me. And in the end, I reached my ultimate goal of starting an entirely new chapter, all while experiencing the wackiest and most intense status migrainous of my life.
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