It starts for me, as it does for many, with an “aura”. A painless patch of light in my right eye appears, as if I have been staring at a bright light – which spreads across my entire vision until I cannot see. I scrabble for the pink tablets because if I get to them fast enough I may alleviate the crushing headache which is about to follow. But then that’s all it usually is – just a bad headache. Perhaps mild nausea. I’m not scared of migraines.
Last week I didn’t get to my pills quick enough. I was blasé about it, I didn’t even have any spare, no packet in a drawer just in case. Once my vision had cleared I walked up the road, bought myself a coffee – a coffee! – got the tablets from the pharmacy and then took them only when I had got home, a round trip of about fifteen minutes.
More fool me. Two hours later, by noon, I had to go to bed and close the curtains. Twenty minutes later my nausea was so bad I had ceased to be a human being and was only a gently pulsing bag of awful green liquid. With a headache.
Giles brought me more pills, the yellow pills, that you are only supposed to take if the pink pills haven’t worked. I swallowed those, managing not to vomit.
The bright and sparkling lights came back. This was new. Usually there was only one round of lights – now another? The headache came on afresh. I breathed in through my nose and out through my mouth. There was no way I was going to be able to crawl out of bed, along the corridor and then heave my head – which now weighed approximately 15 stone and was the size of a giant watermelon – over the bowl in order to vomit. It was out of the question. I had to stay there. Stay there and remain calm and filled with light blue thoughts. You are lying on a beach, that is the sound of the sea, that is the sound of Kitty and Sam playing close by. That is the sound of a schmergun.
No, not a schmergun! Not a schmergun! I meant a schmergun. With the outaborgen! In the highsie, up an ahead on the bonda-bonda!
Fuck, my words. My words had gone. Gone totally. I rang Giles. “Please come,” I managed.
I could repeat words, single words.
“It’s the donda. On skeepie!” [It’s the pills, I was trying to say, on the bedside table. The pills were making me talk funny.]
But I couldn’t say it. My mouth didn’t match my brain.
I shrieked, held my hands to my face, cried tears of horror and laughter because it was absolutely hilarious as well as being terrifying. Was I having a stroke?
“What am I corner endo? None too the house on the above long way!”
“Can you write something down?” said Giles. “Can you text?”
I tried, but nothing. I just wrote “phone phone app”. It wasn’t that there was nothing in my head – there were all sorts of words and phrases that I knew and wanted to use, but they kept slipping away from me. It was all just on the tip of my tongue, it was just there it was just… there… if only I could reach out and grab the word and use it.
“Don’t try to talk,” said Giles. “I am going to call the doctor.”
“Yes,” I said emphatically, using one of the words totally available to me (the other one being ‘No’). “Yes, yes, yes.”
By the time the doctor arrived, things had untangled a little. Normal service had resumed and the magical, mystical thing happened where I thought of something I wanted to say and then said it, and everyone understood me.
It wasn’t the pills, said the doctor. It’s the migraine – it can affect the part of your brain that controls speech.
“Have I had a stroke?”
“No, but migraines mimick strokes.”
He shone a little torch in my eyes and made sure both sides of my body were still connected up. He probably didn’t need to, he could probably see quite plainly that it was a migraine and he knew how terrible they could be without actually being in any way life-threatening – but he knew that I didn’t know. My pain was real, my fear was real.
It can take days to recover from a migraine. I still have to read emails a few times to make sure I have used the right words, not written “the” five times or said “but or and” all in a row.
I am a little jumpy and neurotic about searching for the onset of those bright and sparkling lights in my right eye. And I still lose words as I talk, I reach for them, but they bank away from me and thump off into the sky, calling loudly to their fellow lost word-mates, like a schmergun.
Bless you, Esther. How terrifying! My other half suffers with migraines and I always assumed they were a thinly veiled hangover.. I’m such a shit nurse 😉
Poor you tho, hope you’ve begun to feel more normal xx
Oh you poor thing! I was just talking about this with my physio last week as I’ve been getting migraines that seem to linger in a painful neck ache rather than a headache and I told her about the time I yelled out Bugs Bunny, Babs and Buster Bunny, duvet, radiator and police at my husband when I really wanted to say I thought I might be dying and we were laughing because you are so right, it is ridiculous yet utterly frightening. And that weird tender feeling for days after. I had started with an aura recently before the school run, and thought I’d be fine to take pills when I got back but then I had to dash out a garbled message to my husband as by the time I got there I wasn’t sure I’d be able to recognise the children let alone find my way home (I walked there) I hope you continue to feel better and thanks so much for writing about it while obviously still suffering, it makes it somewhat less lonely and weird to see it described so well xxx
Jill Horne (@HornesterJ) says
This happened to my husband once and I called NHS 24 convinced he was having a stroke. It was terrifying for both of us! I hope you don’t get any more like that. He’s only had that one (touch all things wooden).
Thanks so much for this Esther – this is the exact trajectory of my migraines – and no one has ever described the symptoms so perfectly. I’ve had about four a year for about 25 years and feel your pain! I ALWAYS think I have a brain tumour! Particularly awful when you are responsible for young children (which I no longer am – but fear that my teenagers now induce migraines!)
I have regularly been doing yoga at home, via YouTube for about a year and think that it may well be decreasing their regularity – for me anyway. Take it easy and be kind to yourself – they have long lasting effects, don’t they?! x
Please could you tell me which yoga classes you find good from YouTube?
I don’t do yoga! I am strictly spin and barre classes – I don’t do either from YouTube as I’m too lazy to do anything in my own home, I need to go somewhere and be shouted at
Cara, I find the Yoga with Adriene videos good because they are varying lengths so you can just do ten minutes, there’s no pressure to be especially good at it, she has a nice dog, and she has a video for every situation – Yoga for neck tension, Yoga for stress, Yoga for PMT, Yoga for when you’ve just sneezed or stepped in an icy puddle etc, and actually there is one for migraine which I’ve found helpful during one, if at a stage where you can, and it was very surpringly effective at relieving some of the symptoms. And I say this as perhaps the least yogic-zen-spiritual person on Earth.
oh poor lovely Esther .. terrifying
do look after yourself better .. no idea how? But do
Sarah Robson says
You poor love. Those terrifying ziggy zaggy lines that you can’t see past. And literally not being able to move your head. I’m so sorry that you suffer from them. I’m never far from the packet of pink pills with those yellow ones as back up. But even swallowing them is Herculean. Possibly TMI but I’m often better if I vomit…… xxx
Hi Esther, I’m so sorry, this sounds awful. I get occasional migraines and once, when pregnant, a really bad one caused me to lose all my vocabulary like this. I was at work and it was terrifying. A friend helped me to a&e where they checked me for a possible stroke and then, once that was ruled out, told me I should be drinking more water (obvs!). You totally have my sympathy – it was scary. X
Gillian Thompson says
You have my sympathies. I used to have migraines like the one you describe. They were truly terrible and lasted for days. I don’t get them any more since the menopause.
Lesley Somerville says
My sister suffered in exactly the same way, until the menopause (she also didn’t have them when pregnant). It was awful to see her suffer and not be able to help. Just a horrible burden to bear.
So sorry to hear you are a fellow migraneur. There are very effective prescription drugs that will halt the attack. Do see your GP and ask about Triptans. They also have give you less of a ‘hangover’ than Migraleve. There are some other minor side effects but there’s about five different Triptan options to try so you can find the one most suitable for you. Some are available as nasal sprays which are brilliant when you’re too nauseous to swallow. They can draw odd looks when using them in public but who cares? You can be going about your normal business in around 30 minutes to an hour.
You poor thing! They sound absolutely frightening. I only remember having one really really bad headache when the children were small and I didn’t know where to put myself…I didn’t know what it was a migraine or tension headache? Luckily, touch wood, never had another..
I’m really sorry that you are suffering with this. Have you been able to track your triggers?
I have the same symptoms you describe & was diagnosed with chronic basilar migraine by a Neurologist who has a migraine clinic.
I also have balance issues & feel like I’m walking on a spongy floor. My worst symptom is that my face will droop on one side, making me look like I have had a stroke for a few days. It’s very distressing & embarrassing to say the least. I’m attending the migraine clinic later this week & hoping he can prescribe something more effective as the medication I’m currently taking isn’t very effective for me. I have been suffering with this for 10 years now & the only triggers I can identify are possibly hormone related & also stress or bright lights & direct sunshine.
Sorry to hear you have had this for so long, most people have no idea how awful they are. . I had terrible migraines, twice to three times a week for months, it was hell. The drugs weren’t cutting it, so my neurologist started to do Botox injections in my neck, top of shoulders, jawline and hairline. It was miraculous, they would disappear within 24 hours and then I was migraine free for around two months. It changed my life. I do also have a facial nerve issue which triggered them, as well as hormones or bright lights, but it’s worth talking to the neurologist about botox if you’d consider it.
Thank you Katie. It’s interesting that you mention a facial nerve issue as being a trigger. I always thought my facial nerve issues were a symptom. I will definitely speak to the neurologist about that & also the Botox tomorrow. It’s fantastic that you have found a solution. I hope I will be as lucky.
My Migraine Neurologist has given me Zomig to take for extra pain relief on top of the Topamax I am already on & has prescribed a monthly injection called Ajovy to lessen the frequency & severity of the migraines. Fingers crossed!!
Poor you. Sending kind thoughts and thanks for writing so well, summoning up for me what it must be like. I’ll have more sympathy for migraine sufferers from now on which will surely mean Santa putting an extra tick against your name on the ‘Nice’ list this year.
I feel your pain. I have recently discovered sumitriptan which works a treat if you take it during your aura. Keeping a migraine diary can help you to avoid triggers (there are apps that are helpful)
Sooo I don’t want to be “that guy” but I would gently advise that if you lose your words again (medical term is aphasia) please get someone to call either your GP or 111 – as your doctor explained migraines can mimic strokes or TIA’s (mini strokes to you and me) but it’s not a guarantee that it will be “just” a migraine every time. Especially if you get any one sided pain, tingling or numbness. I only say this as I work in a GP surgery and last week I had a lovely man who had a history of migraines who had aphasia with his headache – turned out he’d had a TIA. He was certain it was just his migraines getting worse and wanted to wait a week for a routine appointment but I managed to talk him round for an urgent GP call back. I mean don’t panic and assumed your brain is rapidly filling with clots but at least get it checked. If you start getting aphasia migraines regularly it might be worth pushing your GP for a referral to neurology ♥️
Gabrielle Fabri Willis says
I suffered with migraine from the age of 11 and found out at 27 that I had a pfo hole in my heart. It turns out that There is a direct relationship between migraine with aura (only with aura) and pfo’s. Once it had been fixed, my migraines went from being monthly, to maybe 5 in 13 years. It was life changing and my sister had exactly the same – maybe worth getting it checked! DM me if you have any questions – happy to answer them!
Sarah Morrall says
I’m sorry to hear this Esther. I suffer from Migraines that present with an aura and had a major stroke at the age of fifty two. The doctors discovered a pfo and thought that a clot had formed there ( I’ve had mesh implanted to hopefully prevent another stroke). I echo the lady’s comment above.
Ok this started off being comforting and now is freaking me out. I coincidentally have a GP appointment to discuss my last episode tomorrow – he’s in for a hell of a morning. He’s going to look like Wile E Coyote when he realises the anvil’s whistling toward him.
OMG Im reading this and wishing (as probably you are) that I never had good luck! 😷 For once I’m not filling in the notify me of new comments box ignorance is bliss and all that
Yep ! That all rings very true and with me a numb side of my face and tongue too – absolutely bloody horrible – better since my hormones are gone … I’m 66 ! My triggers were red wine cheese and not enough sleep which I eventually pinned it all down to
Hope you don’t get them as badly again -I sympathise x
Helen F says
‘…heave my head’ – this is *exactly* it. Sorry you’re in the migraine club too, but thanks for writing so eloquently about it. Hope you feel much better soon.
God, how awful. I was wondering the other day how your back was doing and now this. You’re really in the wars. Fingers crossed for a clear run up to Christmas.
And, if this isn’t spectacularly missing the point, what is the amazing service that sends a GP to your house??
Dee – there are a few home-visiting GP services, the ones I have used are GPDQ and Qured. Both are apps, but I think maybe London only. But there are others operating nation-wide. It is not cheap (think £150ish before the private prescription cost) and they often won’t treat babies under 1yo BUT in certain circumstances it’s worth every penny x
My words get mixed up as part of my premenstrualness. I have had a brain injury which is apparently responsible, but it’s terrifying and bizarre to suddenly not know that there was ever a word for tuesday or fork.
Ugh, migraines. Bain of my middle aged life. Q tho- the pills you mentioned, Migraleve I assume- are they available in the UK? Cannot find them in Ireland and a pharmacist told me they’ve been discontinued because the manufacturers can’t get one of the ingredients (or something, I was too busy weeping and squinting and trying not to vomit to really listen) Anyway if they are available, albeit in a different country, praise be and blessed day, because they are the only thing that helps. (That and magnesium supplements.)
Hope you’re feeling normal again.
Thanks Jessica! Yes I have heard good things about Magnesium x
Emma Laycock says
A friend of mine had a migraine so bad, it left with him with a stutter for 8 months afterwards! Then he had another migraine and it went. Sending well wishes.
I suffered a brain hemorrhage when I was 6 months pregnant with my daughter and it affected my speech for quite a while – it is so scary. Your description of your migrane doesnt sound that dissimilar – really hope it was a one off and that you feel better soon. xx
omg Trudy!!! what happened with the brain haemorrhage? did you have to have an operation? did it just go away? Yes thankfully I haven’t had any more migraines since but I have definitely been affected by it. I type out the wrong words quite often and can’t remember one or two words. But I don’t think I’m actually dangerous. *leaves gas on*
You just described my migraines! So frightening when your speech goes. But tell me, what are the yellow wonder pills?… pink, I assume, are migraleive?? x
they totally are not wonder pills! I don’t think they do anything much tbh – but yes the ones I took were migraleve x
Anna W says
Folic acid! I want to shout this from the roof tops!
I was getting migraines like this more and more regularly, I did some research and asked for a blood test and they said I was low in folate. Haven’t had a single migraine since.
There was a study showing 2mg a day made a difference (then a follow up study that said a lower dose of 1mg doesn’t)
I started getting them after my second child and it’s a problem mostly associated with women of child bearing age, we use up folate with pregnancy and breastfeeding.
Anyway, enough rambling, check your folate levels!