Sayonara Sumatriptan!

Phew 😮‍💨 Migraine. Am I right?

Hi, I’m Moss, aka Glassmind. I’m 47 and have had migraine since childhood, maybe my whole life. I developed migraine with headache at age 38. And that is when I learned about migraine in general and many of its forms.

Migraine plus sleep behavior disorder

Various preventatives failed me. The neurologist who diagnosed me also diagnosed me with REM sleep behavior disorder (which I definitely have had my whole life).

Treating the sleep did wonders. I went from near-daily migraine flares to four or fewer per month.

I tried quite a few acute or “rescue” medications, in different forms, before settling on Sumatriptan injection 4mg. Well, sayonara sumatriptan and toodles forever, all triptans for me!

Side effects worse than the migraine

Why? Short answer: serotonin syndrome and POTS (postural orthostatic tachycardia syndrome).

I had basically three different experiences with each dosage and never determined the potential reasons for the variance. My neurologist kept reassuring me the side effects were normal and that my success rate was good.

What would happen?

1. Well, a third of the time I would have horrid side effects for up to two hours leaving me begging to just have the migraine flare, then poof, the symptoms and side effects would fade into a dreamless sleep. I’d wake with the flare broken, and feeling just icky—a medication hangover.

2. Another third of the time, the side effects were milder, passed quicker, the migraine flare would break—and I might even get to stay awake.

I was sure at least once I had experienced serotonin syndrome. I was less knowledgeable about it then. I just knew the medication always made me feel worse first, even if eventually better.

Higher dosage was a disaster

Then the in house pharmacy stopped providing 4mg. I got bumped to six. And that, was a disaster.

Crying and moaning uncontrollably from pain and tossed about by vertigo and nausea, I tried to consider my options through the cognitive muffling. I was concerned to take the new dosage alone. I called supportive people. All were quite far away. Driving myself to hospital was impossible. Walking was barely possible and excruciating. I texted my spouse that I was going to go ahead and inject. And so I did.

In less than five minutes the robed figure was coming for me, having sent ahead a host of minions to attack my body. I will spare the reader the visceral details. Look up serotonin syndrome and imagine the near worst (I am, after all, alive to type this.)

My experience with serotonin syndrome

Calls to unanswered numbers. Brief one word texts to my spouse as my health spiraled down and down…my heart racing up and up. With everyone I could turn to more than an hour away, I called poison control.

And hung up on them as I got worse.

So few minutes were passing and I knew that. I knew my body was more than suffering from side effects, it was struggling to live.

An ambulance ride to the ER

I’m not quick to go to the emergency room. The last time I was transported by ambulance I was 22.

The operator had me perform some tests to rule out a stroke (in between bursts of symptoms through which I couldn’t speak nor listen), as a firetruck crew arrived.

The crew assessed me and stayed as I went through waves of symptoms until the paramedics arrived. And off to the hospital. I managed a photo of my feet and the inside of the vehicle and sent it to my spouse.

On route, symptoms evolved, worsened, changed. The EMT was dismissive of my reporting sudden numbness. I was tersely told I was hyperventilating. Um, no. I’m a chronic illness champ and a daily meditator. Despite my collapsing autonomic, nervous and gi systems and regular use of the emetic bag, I was still actively mindfully breathing slow and deep at all possible times. It was definitely not my first rodeo. This bull was just extra feisty.

Relief, at last, in the emergency room

Into the ER, where migraine seems to be a specialty. I’d been twice before in the last decade. They knew right what to do. No dismissal of any symptoms, lowered lights, and two masks: one for my eyes. Some neurological tests and a physical exam, my history and report taken, the doc looks up my records and just orders the meds that worked in the past.

And voila…. Well, a slow voilaaaaahhhh later and I feel crummy, and ready to go home. A second exam and neurological tests and off with my spouse, who by then had arrived, and home to bed.

Human bodies are fascinating, yes? At 9 am I felt well. I began to mow the lawn. At 10am I felt POTS symptoms rising. At noon it was a migraine. 1:30pm the er. In bed by 4pm. It’s a bit for my mind to grapple with from fine, to expiring, to good enough in half a day.

Medication sensitivity makes things difficult

I have a history and diagnosis of medication sensitivity. I’ve over 40 medications known that I cannot take. That was why I was concerned to take the triptan at all. In follow up with my neurologist, I was met with skepticism about serotonin syndrome. It was still agreed to try a different medication. Except…

Insurance protocol is to try a different triptan before trying any other class of medication. The neurologist advocated for me and got approval for an acute CGRP. Yeah!!!

I needed to know though. Was it “just bad side effects?” No.

I did my research. I deep dove. I looked up all the words new to me.

I definitely experienced serotonin syndrome. And the neurologist was wrong on another point also. I was told “You can’t die from serotonin syndrome.” Yes. Yes one can. I nearly did. POTS is an increased risk factor.

And in learning about serotonin syndrome in such detail, I also learned that I had gone through it almost every time I took sumatriptan. I’m a very lucky person.

Going off the triptan

Dismissals aside, I “get” to be free of triptans. And right now, that is all I care about. I’m going to talk to my primary care doctor (as that doctor is phenomenal), and ask if I can switch management of the sleep disorder and migraine to primary care. Otherwise, I will recalculate my options.

For now I’ll head out into the great unknown with CGRPs and wave buh-bye in the rear view mirror at sumatriptan and siblings. Thanks, no thanks.

Thank you for the opportunity to share and for reading my ramblings. I hope this cautionary true tale helps others advocate for themselves before finding themselves in such a position. Maybe triptans are perfect for you.

Whatever the medication: if the side effects are troubling you as much or more then Migraine, insist on being heard. Hugs to all. May the hours be gentle with you.