Migraines - what was your first one like?

[ScrambledSmegs]

Yesterday my DH was chatting to a colleague who suffers with migraines and he was struck by the fact that our first migraines presented near identically. This surprised me as when I saw a neurologist a few years ago he dismissed the story of my first migraine as an irrelevant anomaly. I’d like to know if this sounds similar to what other migraine sufferers experienced?

I was18 and on holiday abroad. I had a headache the night before but nothing unusual. I woke up early with an incredibly intense headache and went to the bathroom to find paracetamol. When I looked in the mirror I realised that the entire left hand side of my face had ‘dropped’ and didn’t move like usual. It was sort of numb and tingly.

Because I was young and scared but also had no idea what to do about this, I went back to bed and fell asleep until about midday. My face was nearly back to normal by then and the pain in my head had settled to more of a dull ache. I told my GP when I got back home but as there was nothing to see by then and I was only 18 he wasn’t worried and there was no further investigation.

Ever since then I’ve suffered from regular, debilitating migraines.

In my experience there’s little interest in the first migraine and how it presents. It makes me question whether there might be a clue to the cause of certain migraines and it could help to have more targeted treatments, rather than trying you on a series of drugs until something works.

Sorry for the essay! TL:DR - what was your very first migraine like?

Intense headache, loss of vision. A bit of confusion. I know several people who've had the face dropping on one side thing, though.

No idea, I was a young teenager so they've plagued my life for over 30 years now.

What you're describing is a hemiplegic attack. I also get these, including with the stroke like symptoms.

My first hemiplegic attack didn't happen until I was about 29. I remember it clearly - the pain was one of the worst I've ever had, absolutely brain numbing. Then I realised I couldn't move my right arm properly, couldn't move my face evenly but I was in so much pain I couldn't get help. I lay down to sleep and was peacefully convinced I'd had a stroke and was going to die. It was a shock when I woke up a few hours later!

There is limited research into the migraine types and differences in treatment methods.

Personally I uses frovatriptan tablets for attacks I believe are going to last some time and zolmitriptan nasal sprays for the ones that blind me, or where I need to function ASAP and can't sleep it off.

Kaleidoscope aura on one side, distorted vision, followed by a severe headache on one side and vomiting ++
Started at puberty and still have them 45 years later, albeit not with the vomiting and their duration is shorter nowadays.

I can’t really remember - my migraines have changed quite a lot over the years and I’ve fortunately never had them regularly. My initial migraines - which I didn’t realise were migraines until later - were visual disturbance only (as a child) without a headache afterwards. It was only as a young adult when I had my first migraine with aura (predictable pattern of visual disturbance followed by headache) that I tracked back and realised that the visuals were the same. Interestingly now I don’t seem to get the aura - or haven’t done for a few years. I do get strong prodromal symptoms around word finding difficulties etc. and the extreme pulsating headache which typically lasts 4-12 hours. I suspect I had some hemiparesthesia or whatever it’s called the last time too as my left leg and arm felt weird and weak. My migraine is always on the right side of my head so that makes sense. They’re such strange things. I think Oliver Sacks wrote one of his case study books about Migraine, might be of interest.

My teenage son has numbness on one side with his migraines as well as the headache and sometimes nausea. He's on propranolol as a preventative and sumatriptan to relieve symptoms if he gets an attack.

I too have migraines but no numbness on the side. Instead very pressurised scalp, neck and shoulders - been known to pull my hair out - and acute headache with sometimes nausea and a feeling of disassociation with the world around me. I've been told 'you can see it in your eyes'. My migraines now are not like my original attacks as a teenager which were classic fierce headache and nausea. Would have to lie down in a dark room and be sick for it to go away.

I wish there were more trials and research into migraines. It's really affected my quality of life at times and is starting to do the same for my son.

Edited to say that sometimes my migraines can last up to 3 days. Utter misery.

Is that what a hemiplegic migraine is? You’ve described an experience I had once and I thought it was a bad reaction to the migraine medication so have been listing it as a reaction on all medical forms since! I thought I was going to die but couldn’t move enough to call an ambulance.

My first migraine was aged 15.. I was using the bacon slicer in the deli were I had a Saturday job..I suddenly went almost completely blind and had a cracking headache.. I managed to leave via the back door before I vomited in the car park.. I stumbled home were my DM recognised what was happening...
I started my first period the next day..(late starting)
The worst migraine I ever had was 10 days overdue with my DD.. again I started to go blind... within minutes I had a very intense burning down the left side of my face, arms and body.. I couldn't speak.. I managed to say '9..9..9' to my MIL.. I remember the ambulance doors closing as my 3 year old held his Nanny's hand thinking it was the end for me..but hopefully they would save my baby..I was blue lighted to intensive care because they thought I'd had a stroke..Luckily it was only a hemiplegic migraine and I started to recover... I still had to push her out with a blinding headache that night...
I tell friends that have migraines about it in case it happens to them when pregnant.. I had never heard of it .
32 yrs ago and it can still make me cry...

@Marylou62 that sounds utterly horrific. You must have been terrified. I do remember one attack where I was sick 26 times in one day actually wanting to die but at least I wasn't heavily pregnant. I do hope they ease up for you and you are getting good care.
One of things I can't help but think about is the time I've missed with my family - having to retreat into a dark room and be alone for hours and sometimes days on end.

I started with cyclic vomiting syndrome, then had visual migraines, then the cvs stopped and I had full blown migraines after visual aura.

Mine started with Scintillating Scotoma. And every one I’ve had ever since has done the same.

https://migrainetrust.org/understand-migraine/types-of-migraine/hemiplegic-migraine/

Essentially, yes it it. They say it's rare, but I see it mentioned a lot on the forums / pages I'm on. It could be self selecting bias though - people with lower levels of migraine (in terms of how often they get attacks or lower severity of symptoms) are less likely to be looking for support than those of us with very scary symptoms!

As I've got older my migraines have changed a lot. I get hemiplegic attacks, but also vestibular, aura (the newest type for me - I always had non-aura until my late 30s), cyclical vomiting and my new personal favourite - hormonal. Bloody perimenopause.

My dad gets abdominal migraine and has since he was a small boy. My brother started with those and gets low level migraine occasionally as an adult. My mum had similar history to me but hasn't had a migraine since she retired apparently 😭.

I'm on CGRP injections and under neurology for mine. Things are pretty stable now, the meds have reduced my hemiplegic and vestibular migraines thank god and I've not had a CV attack in a few years.

My very first was caused by sunstroke in my teens. Blurred vision then a sharp headache and feeling queasy.

my next, I was about 50 and I got the blurred vision, rainbow zigzags in a crescent down one side of my vision and after this had cleared up, a mild headache that made me feel sick.

It was... she's just left with both my grandson's that's how long ago it was..
My son remembers the doors closing too but he was with his beloved nanny so wasn't traumatised..
I remember the GP shouting that my BP was sky high too and when I saw the Dr later (apparently the ambulance service called them and she got there first) she said she was terrified for me and she was sure I'd had a stroke..
I'm 60s now and touch wood I haven't had one in ages...

I was 21 and I'd been out the night before drinking, so I felt pretty hungover.

I was watching a nature programme on TV, and felt a bit odd.

My left side went numb and tingly, and I started to see jagged white lines and lost my peripheral vision.

That passed in around 15 mins, then I realised I couldn't see properly. I could see stuff, but couldn't put it all together in a coherent way.

I got in a panic and phoned my mum because I thought I was having a stroke. I described my symptoms, and see told me it sounded like a migraine. Turns out they ran in that side of family.

Ob wow - that’s the first I’ve heard of hemiplegic migraines, and yes it sounds likely that’s what I had. How strange that it was the first and I’ve never had another like it.

Iinteresting that most people’s have changed over time too. Mine are of a type and have been for a long time however I have had the occasional aberration.

Thank you all so much, you’ve given me lots to think about.

Blurred vision, vertigo and vomiting. The only thing I can do is lay on my back in a dark room.

Going out with mY mum to the supermarket and feeling suddenly really sick and piercing pain in my head before getting there. I stayed in the car and pushed a brown flower cushion over my head as I couldn’t stand the light. I just wanted to be dark and cold. I can still smell and feel the cushion now so heightened was the sensation. Just awful. I think I cried too. I was about 14

my migraines were like that I’d vomit every 20 minutes for 6-8 hrs, anybody that saw me having a migraine always tried to ring an ambulance despite me telling them it was a migraine. Recovery was so painful as I felt i’d pulled every muscle possible.

Husband’s was intense pain and vomiting followed by what looked like seizures. It was really scary. He’s only had the ‘seizures’ with one attack since (following the Covid vaccine) but still gets the pain and vomiting. Migraines are just awful. I wish I could take them away from him :(

started with blurry vision, not being able to see clearly, then I would have a throbbing pain on side of my head and I would feel intense pain. Felt like I couldn’t think straight and then would start throwing up because of the pain. They lasted for hours. I’m fortunate that I haven’t had one in years.

Scintillating scotoma only. And started when I was likely in peri menopause (had hysterectomy so not sure).

Although I've occasionally had crashing tiredness which I think has been brought driving under trees causing shadows that made me feel headachey

Thank you all so much for your responses - I'm so sorry to hear about your migraines, they have such a massive impact on our lives and our family's lives. I only recently discovered that 75% of migraine sufferers are female, which explains why they seem relatively under-researched.

And thank you for diagnosing my first migraine too, hemiplegic migraines are the worst and I'm desperately sorry for anyone who's had more than one. Despite the fact that my migraines are characterised by uncontrollable vomiting for up tp 24 hrs, I'd still rather have that than ever experience a hemiplegic migraine again.

(Sorry for going awol till today, I had an extremely tiring and stressful weekend and what do you know, I had a 2 day migraine from Monday morning. Good times)

The dark/light thing is a trigger for my DH too - he only developed them in the past 10 years. I wonder if an optician would be able to help?

OK this is weird, I have absolutely no memory of writing this message. What on earth?