Very few things I have experienced are quite as demoralizing and challenging as a migraine cycle that just. won’t. stop.
Currently, I live with the diagnosis of “chronic migraine”, which means that I experience head pain most days and a migraine attack on at least half of the days of every month. As you can imagine, such pervasive pain makes managing the basics of daily living intensely challenging.
But occasionally, this baseline level of head pain goes a step further, and I experience a period of weeks (or even months) where my migraine attacks are more severe and persistent than usual.
When this happens, migraine pain responds to typical medications and intervention with less and less effectiveness, and my daily focus becomes, managing the pain or attempting to keep it from escalating (even more so than during my normal routine).
When this happens, the term my neurologist and I have adopted is “migraine cycle” or “migraine flare”. Clinically, this is commonly referred to as “status migrainosus” or “intractable migraine” – defined as an especially severe and long-lasting form of migraine headache, affecting less than 1% of people and lasting longer than 72 hours.
An “ideal” migraine treatment would include preventative treatments that would keep a patient from ever experiencing such a flare. However, for chronic migraine patients who continue to search for an effective prevention plan (hi ♀️), these cycles happen; and they are incredibly challenging, difficult to break and frustrating to manage.
Part of what makes a severe migraine cycle so hard is that each one is slightly different, and traditional medications and tools often aren’t enough to cut through the pain for lasting relief. Each person who experiences status migrainosus will have an individual plan for combatting their pain. Unfortunately, no “one size fits all” approach or silver bullet currently exists.
But, there is hope! ✨ It is possible for these cycles to break and for the pain to lift. This is something I must constantly remind myself of when I’m experiencing a flare, because sometimes getting to that point involves an absolutely grueling stretch of time that demands buckets of perseverance and patience.
Below, I’m sharing 6 things that help me to break out of an intractable migraine cycle (this list has been developed over the 6 years I have lived with chronic migraine). Disclaimer: this is not medical advice, it is just my experience and perhaps will give you some ideas to discuss with your own doctor.
1. Short course steroid taper — I have tried tapers of both prednisone and dexamethasone to break migraine cycles, and have personally had more success with dexamethasone. My neurologist and I try to limit my use of steroids, and they are considered one of my last line interventions. In addition to putting systemic stress on the body, they come with a long list of side effects (intense insomnia and irritability are the worst for me) that are disruptive and difficult to tolerate. However, around day 3 or 4 of a steroid taper, I consistently feel some relief (even if it is very minimal) and am able to lean less on my acute rescue medications. I have done steroid tapers lasting from 3-14 days. They aren’t a magic cure, and I have had times where they haven’t helped nearly as much as I hoped, but they are the most dependable tool in my arsenal for getting out of status migrainosus.
2. Outpatient infusion — I’ve done a handful of different types of outpatient infusions and found them to be very “hit and miss” in terms of their effectiveness. However, an intense migraine cycle can land you in a pretty desperate place, and if something has helped at all in the past, I am usually willing to try repeating it. There are many infusion medications that have not helped me, but consistently I’ve found that a combination of IV fluids, magnesium, benadryl, toradol and phenergan can help to break pain, if only short term. Stronger medications in an outpatient setting (like DHE and depakote) haven’t provided me with much relief when I have tried them, and the side effects have been difficult for me to tolerate. There are times where I’ve gone in for an infusion, only to have my pain escalate back to 9/10 that same day, which is always so heartbreaking. But there are also times where they have helped, and I consider them one of my tools.
3. Deep sleep — This one is tricky. For me, one of the most disheartening parts about status migrainosus is that sleep will often incubate migraine pain. Sometimes I wake up literally baffled at how pain can escalate so much when I am supposedly “resting” and “restoring my body”. Going to sleep with my head hurting only to then wake up with excruciating pain is one of the most trying and heart-wrenching aspects of a bad migraine cycle. But, there is something to be said for the power and potential of deep sleep to help break a pain cycle.
During an aggressive headache cycle, I will sometimes combine my typical rescue medications (triptan/nsaid) with a sedating medication from my neurologist . This might look like taking a triptan with some combination of phenergan/benadryl/compazine/tizanidine/gabapentin/melatonin to help promote restful sleep (note: I don’t use these all at once, these are just different things in my toolbox). This strategy has a pretty unreliable success rate for me; honestly, it is probably around 30%. But, because I know that sleep is important when your body is fighting so hard, I continue to experiment with and hopefully find combinations of tools that will help me to achieve the goal of resting my body. So, even though this strategy doesn’t consistently “work” to break my pain, I think it is an important aspect of my treatment.
4. Hibernation bubble — When I’m in a bad migraine cycle, I have to get really intentional about my energy, activity and interaction. This includes phone calls, text messages, outings, etc. When things are at their worst, pain wise, I retreat to my “hibernation bubble”. I’ll put my phone on airplane mode, cancel all appointments and focus completely and solely on nurturing myself through the pain in whatever way I need in any given moment. Sometimes this means downloading a new audiobook and literally listening to it for 6 hours straight in bed with the curtains closed. Other times it means sitting on the floor of my shower for temporary pain relief. Or getting into comfortable clothes, grabbing my ice hat from the freezer and listening to repeats of a favorite TV show for distraction. Other times it’s letting myself cry and feel the hurt and pain (even though crying escalates the pain). In my hibernation bubble, I put zero expectations on myself and make managing my pain the top priority. It’s a temporary state where I keep telling myself, “do what you need to do and nothing else”. Relying on this bubble of safety is a way to get me through when I feel like I can’t do “it” anymore.
5. Time + patience — I almost cringe writing this because I know that when you are in the middle of weeks of unrelenting pain, this feels like the most un-helpful advice in the world. However, for me, it truly is one of the bedrocks of getting through status migrainosus. I repeat mantras that remind me of the impermanent nature of everything. One of my favorites is: this can and will change. Sometimes, when I am doing everything I can to break the pain and it isn’t working, the only thing that keeps me going is the knowledge that it simply cannot last forever. I remind myself that I have experienced migraine cycles that felt never ending before, and have I always come out of them…eventually.
6. Urgent care/emergency room — A last resort is always to visit urgent care or the emergency room. Part of what makes this such an undesirable option is you never know what you’ll get (care wise) until you’re actually there. I have gone into the ER with written instructions from my neurologist. Some doctors follow the list exactly, and others decide that “they know best” and do something completely different. This is so hard and stressful. However, when you are truly at a breaking point with your pain, sometimes it is necessary. Many migraine patients have horror stories from the ER, but I can say with a grateful heart that, on the whole, my experiences have been more positive than negative.
If you do find yourself in the position of having to go to the ER, a few things I’ve found helpful are:
Have a plan of what to ask for with your headache specialist
Pack ice packs/sunglasses/headphones/hat
Make sure to bring someone who is familiar with your migraines and can advocate for you.
It can be absolutely soul crushing to go through the experience of getting migraine treatment in the ER and then have your migraine escalate the next morning, but there is no shame in reaching a point where you need help, even if it is temporary.
Some things I have tried that haven’t helped me (but have worked for others) and might be worth talking to your doctor about:
Nerve blocks (*although, occipital nerve blocks were the only thing that helped me to break out of cycles of occipital neuralgia when I was experiencing this)
SPG (spenopalatine ganglion) blocks: these can be used both as acute and preventative treatment
Outpatient infusions: some medications I’ve tried that can be effective for many include DHE, depakote, ketamine and prochlorperazine
Toradol injections: I have done these both at home and in the office of my primary care physician
Lastly, some patients with intractable migraine wind up being admitted to the hospital for inpatient treatment for a few days. This is something I haven’t personally done, but I’ve gotten extremely close to needing (have even scheduled admittance dates) a handful of times. It’s a very scary place to be and can feel downright apocalyptic to have migraine pain so severe it requires hospitalization. But it is a widely used tool for out of control migraine pain, and something worth considering when the circumstances call for it.
The people who endure status migrainosus are some of the toughest people around. It’s an isolating battle fought behind closed doors and blackout curtains. But, I want you to know that if you’ve been to that dark place, fighting that agonizing unseen enemy — I see you, I understand your pain and I am in total awe of how strong you are.
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.
I’m in the same situation. The infusions, nerve block and steroid cycle but not confident that any of them will really work every time. I wish there was a place we could go and do a migraine retreat. Like 3 months where you have access to all the medicine you need, but also lots of ways to quiet the outside world, to calm the system, to give our bodies a chance to really relax. Maybe since you’re more connected, there’s a way to make it happen.
I’ve thought the same thing, if only!! ❤️
I’ve been in status migrainosis for 10 years—last spring was my anniversary. This is an awesome article Natalie, and I love your constant emphasis on being gentle and adaptable. I have tried all the treatments I can, but I have severe drug allergies and can’t take triptans or any preventative except lithium (which is a stab in the dark). I do take pregabalin for trigeminal neuralgia, but I am deathly allergic to pain meds, and can only take NSAIDs sparingly. I have great doctors for migraine…but basically, their response is to wait for a better drug, and meditate/breathe/relax my system as much as possible. I should say that Botox helps a little, so I do that. I paint and draw and knit in low warm light—that is most of my days. But I do hold out hope for a new treatment or drug, because once a migraine is intractable for this long, it’s here to stay (according to the drs). My job is carving out a life within the web of that intractability.
This is so beautifully said — so proud of you resilience and courage. Intractable migraine can feel like an unforgiving beast. Sending you love and hugs from my low warm lit room and a reminder that you are not alone ❤️
Thank you for writing this! I’m currently in a migraine cycle and have been in my hibernation bubble for almost a month. Your last paragraph made me cry. Thank you for making me feel seen and like I’m not alone.
It is so lonely and challenging, sending you all of the love in the world! ❤️
I went to the ER 3 times in 3 weeks. Finally was referred to a Neurologist by my PCP after a 28 day Migraine cycle . Learning this slowly on what it means to have a migraine that never ends. And how desperate you can become to just find relief. How humiliating going to the ER is— the last time I was given an IV with Valium. Finally have found some relief when I got TPI and a round of prednisone. Happy (but not that happy other people deal with this) that there are others who experience the same type of HA.
Thank you for this validation. I’ve had an intractable migraine for nearly two weeks. I’m doing all the things in my toolbox. I think I’ll call my doctor tomorrow. These types of migraines usually end up in an ER visit. Sigh.
so sorry to hear you’ve been in so much pain! it is SO draining and exhausting when it goes on and on and just doesn’t want to break. lots of love and strength your way <3
Thank you for sharing this. I’m in the midst of a rebound headache and found out my neurologist left the practice and his replacement won’t arrive until August (it is June). I’m headed to the local clinic to hopefully get a shot of depakote or steroids. For someone searching for other options your post was extremely helpful. Take care!
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Thank you for sharing. I’m on day 14 of an unbreakable migraine and my third and last day of IV infusions with DHE, toradol, magnesium, zofran, dexamethasone, phenergan, demerol, benadryl, and ativan. I’m feeling pretty hopeless. DHE has helped me in the past, but nothing is helping me right now. Thank you for sharing your experience and reminding me that somehow this will break.
Starting week 3 of a status migrainosus. This isn’t the first time, and I know if won’t be the last. I was hospitalized with one about 20 years ago, and it took 3 days for the migraine to break. It was a nightmare. The last time I had one that lasted this long was exactly 4 yrs ago. That one lasted a month before it broke on its own.
I’m starting to reach the point where I’m considering going to the ER, just to try to get some relief, even though I know how torturous that can be.
I am experiencing my first intractable migraine in my whole life (I’m 33 and only had 2 migraines before this, both only lasting 2 days). I didn’t know this was even a “thing” until this all started 2 months ago. It’s starting to feel like a very dark lonely place. I finally googled “intractable migraine” tonight and came across this. It brought tears to my eyes because in these 2 short months so much of this resonates. I also suddenly don’t feel so alone – or so broken. I keep looking for something else to be wrong, something else has to be wrong – but after reading this and others comments I feel differently. I’ve already shared the link with my parents and partner. Thank you for sharing your story. I hate this is my new reality, but I’m relieved to know I’m
not alone in it.
Thank you so, so much for writing this. It is so hard to find content and community online (or anywhere for that matter) on status migraines, and so you writing this really meant a lot to me. We exist & we’re out here fighting alongside you.
My husband has had a debilitating headache for 19 days that has sidelined him from everything. He’s 39 and we are generally very healthy, active and pain free. This is a first for us. Without understanding what migraines are I have taken us down every path thus far with no answers….We’ve done ERs, ENT, GP, and two neurologists….CT/CTA/MRV/MRI/Venogram scans….all thankfully ruled out the ‘worst case’ scenario. Just yesterday after an overnight in the ER, the final neurologist gave my husband a 5 day medrol steroid taper pack. Hoping to god this works. This article is exactly my husbands life right now it brought tears to my eyes as I think this is what’s happening! I’ve learned so much thank you for the advice. Those of you who experience this regularly, my heart goes out to you.
Thank you so much for writing this – it’s incredibly helpful to hear what other people’s experiences are like. I no longer get prolonged migraines frequently (I am a Botox success story), but it’s almost more jarring when I do because I don’t have a "system" in place. It helps cut through the isolation to read about your experience and I appreciate being able to think through the tools in my toolbox and next steps. I especially appreciate the grace with which you approach just hanging tight – I tend to go to a very discouraged headspace so reading about your mental approach was also extremely valuable for me.
My hibernation bubble mirrors yours exactly. Except add a 3 year old. I haven’t had a true one since he was born. But I do remember those days. I remember being very proud of myself for putting myself first but at the same time so guilty for everyone I flaked on or canceled on (as someone who takes clients for my profession). This is such a good post. 🙂
Thank you for this article, I felt like I was alone! I’ve taken so many meds from my neurologist one had a bad side affect that caused me to have a seizure. I’m now going to schedule the DHE and not looking forward to it. I break down and cry cuz I’m so tired of the pain. It’s been 4 months now. I go to sleep with a headache to only wake up to one. Then over the day it gets worse and OMG I’ve woke up with pain so bad I wanted to go to the ER but I don’t like going so I wait it out somehow.