I was diagnosed with status migrainosus when head pain landed me in an accident and emergency. I had no clue what status migrainosus was – so I found out. It also made me question if I really did have status migrainosus. Here’s how it all went…
If you’d like to watch a video version of this blog post then you can right here on my YouTube channel:
Day 1 to 3
It was mid-March 2021 when I was hit with what I thought was a really ugly and unrelenting migraine. As the day went on, I found myself struggling to keep my eyes open. Feeling highly nauseated, I threw up – something that usually helps me when I go through such migraines a couple of times a year, so this didn’t feel new to me but the fact that it didn’t help was new.
Turning off my bedroom lights, as I preferred the dark (this is called photophobia – it isn’t actually a phobia but it’s a term to describe light sensitivity – when “bright lights hurt your eyes”) I struggled the entire night.
Next morning I found myself struggling to eat a spoon of food, struggling to keep my head up and of course the pain was horrendous along with severe head pressure when I was sitting up – this was the worst I’d felt until then.
I went to A&E, I was put on fluids and medication through an IV – I was given some of the strongest painkillers and anti-nausea medicines to help me through so that I could eat and eventually they got my eyes tested, which were fine, I was feeling 60% better as I was allowed to discharge myself.
I thought my migraine was under control – I could now manage this at home. I tried for a further 24 hours but it was getting impossible.
Day 4 to 9
I was back at A&E and this time nothing they gave me worked. Nothing. I was screaming and crying but the strongest of medication was failing me in my situation.
Relevant Read:
I spent the next 6 days in hospital on constant fluids and medication through IV. What eventually calmed things down by 40% were steroids but even that wasn’t enough of a difference for me, but I was allowed to go home and see how I do on oral medication and being in my own bed.
I was diagnosed with status migrainosus.
One important thing to note: during these 6 days, a brain MRI with contrast was performed which didn’t show anything of significance other than one line that stayed with me (I will speak about the significance of this in my next post):
“mild pachymeningeal enhancement over the cerebral hemispheres is of unclear significance.”
Before I continue, I just wanna say, I have wayyy too many medical conditions to deal with and now I had a new one?! So as usual, I needed to learn about status migrainosus, also known as intractable migraine…
What is status migrainosus?
Status migrainosus is a migraine that lasts over 72 hours and in which usual treatments do not work.
During my time reading more about this, I came across people online who had been suffering from this form of migraine for months and THAT thought scared me. I did not desire to be stuck with such a migraine, but I felt I was.
Why did I feel I was?
Because my symptoms matched and because after eliminating all other possibilities by my primary doctor and a neurologist, status migrainosus is what I had.
Imagine lying in bed, in the dark, in considerable pain, struggling to sit up because of the head pressure, feeling nauseated and reading this on Healthline.com:
“Status migrainosus headaches affect less than 1 percent of people with migraines. However, they’re intense and they stick around for longer than 72 hours. Even treatment with traditional migraine medicines like triptans and ergots often won’t cut through the pain of a status migraine. The pain and nausea can be severe enough to require a hospital visit for treatment.”
How to treat status migrainosus
I had done a course of steroids, channel blockers, anti-nausea medication, anti-seizure medication and oxygen therapy – that’s usually the next line of treatment after the standard treatment of painkillers don’t work.
Someone with status migrainosus even suggested botox injections, which is in fact very beneficial for many with this form of a migraine, but for now, my doctors weren’t too keen.
Relevant Read:
- Is My Pain Real or Imagined? How to Get Rid of Self-Doubt When Having a Chronic Illness
- 9 Natural Pain Relief Methods for Chronic Pain
I also tried drinking ginger water, trying steam-inhalation, migraine balms and even using hot and cold compression on the throbbing areas of my head but the usual stuff just did. not. work!
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How I realised I did not have status migrainosus
Day 32 – mid-April
Since discharge, days were passing by but my pain wasn’t relenting, in fact, the pain was increasing and new symptoms were beginning to trouble me.
Other than the painful pressure I felt while sitting up, I now felt an intense pain if I tried to bend down even the slightest. The pain travelled from the back of my neck and up into my head just like a horrible cramp would do.
Here’s how I described the feeling of a cramp to my doctors: it’s as if my muscle is dehydrated and about to snap all while going through a shock – just like when you get electrocuted.
Something told me, this wasn’t status migrainosus and the doctors felt it too.
In a follow up opinion in which I was struggling to sit, my primary doctor and my neurologist believed that my MRI brain may have been done too early. I didn’t even know there was such a possibility.
Day 39
As the pain got me on my knees crying away, I found myself needing to be admitted again.
Here’s what happened next – read here for the next part of this story…
But before you go ahead, I wanted to add one important thing. My stress levels were at an all time high. I was struggling to manage my puppy that was just five months old at the time and then him and I both fell ill with my migraine and his tick fever at the same time. In fact, the chaos in our lives began the same day so instead of my stress levels reducing, it increased but the migraine was so bad that crying, screaming, letting out some raw emotions wasn’t possible – the slightest movement in doing so made my pain worse.
I was feeling sad to see my pup, Toby struggle and I was going through some serious guilt because I couldn’t be there for him as I needed to be. I’ll leave his health story for another time, but for now, I just wanted to say thank you to my friends who were there for him and me…
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And now you can go check out the next part of my story 🙂
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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
Those were tough days just looking on, not sure how you even managed them with that amount of pain and stress. Look forward to reading the next part, which seemed to be worse than this.
While writing the two blog posts on this, I wondered the same – how did I get through it?!
Thanks to you, Priyanka, my family and Toby I managed decently so I’ll be eternally grateful for that. O’ plus my favourite helped me loads. I could not have done with without her.
Shruti – I read these out of order, but just wow. I’m so sorry you had to go through all of this – but very glad that your situation is improved now.
Status migrainosis sounds horrific. I had a chronic(in my case basically constant) mild migraine for about a year and a half and it was exhausting. But generally the pain wasn’t too far over a 4, and went down to something more like a 2 or so after Botox(i definitely am a fan).
Things are much better now with being on aimovig, which has ended the migraines most of the time. It’s so nice to have that relief!
I’m so sorry you went through this ordeal and so glad that you had friends who could support you (and your mom and Toby) through it!
*hugs*
Alison
Hi Shruti,
I read this post when you published it last week and meant to leave a comment for you then. Alas, I was distracted, but that does mean you got double the traffic from me! I’m so very sorry you went through all of this. I watched with growing concern for you for months and I’m so very happy that you’re out of the hospital and that Toby is doing ok. You’ve done a fantastic job of explaining things here for your readers. I’ve also read the second part of your story and I’m just blown away that you’ve been going through all of this. I will continue to send you and Toby healing vibes and lots of love from Taiwan.
You are one strong woman! I’m do glad you had the care of dedicated doctor’s, but how aweful when you went for weeks and weeks of no relief. So scary to realize all these educated doctor’s couldn’t figure out what would help.
It’s such a wonderous thing that you are now well enough to share your and Toby’s experience. You and little Toby have been through so much. Here’s to you both felling stronger and stronger. 💜
This is just so sad to read. Chronic pain of that level is one of the worst things to have to endure in life. Though it all you still dropped the occassional message to us with such Grace. You are one strong amazing lady and sending all my love.