6 Strategies for “Getting Out” of Status Migrainosus

Chronic Illness

  1. Emilie says:

    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.

  2. Patricia Nordeen says:

    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.

    • Natalie Sayre says:

      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 ❤️

  3. Lesley says:

    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.

  4. Sar H says:

    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.

  5. Iona says:

    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.

    • Natalie Sayre says:

      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

  6. Tricia F says:

    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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  8. Hannah Lindsey says:

    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.

  9. Inaya says:

    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.

  10. Natalie says:

    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.

  11. Jessica C says:

    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.

  12. Lisa says:

    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.

  13. Anna says:

    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.

  14. caitlin richardson says:

    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. 🙂

  15. Patty says:

    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.

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