AIBU to ask you to tell me about your worst migraines.

[migraineosaurus]

I’ve always suffered from migraines on and off since I was a child.

i took one last Wednesday that completely wiped me out and I feel like I’m still recovering from it.

my arms and legs still feel heavy and just a bit off. Getting better but it just seemed to knock me for six and sumatriptan had no effect.

I took them during puberty and they seem to have returned with perimenopause.

just looking for fellow sufferers!

I'm going to say it - get off the phone.
Anyway, my migraines start with horrendous vomiting, with head splitting pain that feels worse every time I heave. I can't keep down even a sip of water. I shake from head to feet and have trouble not crying from the pain. Sometimes I vomit every time I try to move, meaning my poor partner is holding me over a bucket while I dry heave (nothing left to bring up). I wish I could chill on social media during a migraine, what joy... Sometimes I end up in hospital for up to about 48 hours.
Sorry, just felt the need to vent about my migraines.

Just replying to say i know how you feel. I normally vomit every 15 to 20 mins for at least 8 hours when I have a migraine and focussing to read anything, book or phone is beyond me. It's grim. Most people don't understand

Huge sympathy to you, and the rest of you suffering.

My Grandmother used to bash her head off the wall of her bedroom they were so awful. I’m glad treatment seems to be improving for you all.

Mine started in my late 30s, I'd get one every few months for around 12 years, Id usually wake up early with intense headache and eye pain, neck ache, heavy arms/legs Id feel constantly nauseous and vomit approx every half an hour all day, I'd have to lie in a dark room unable to open my eyes, talking was really difficult/painful. The worst one I ever had was when I took sumatriptan genuinely thought I was going to die. About 2 years ago I got the mirena coil and started HRT... No migraines since! I also don't get many normal headaches anymore it has been absolutely life changing.

They are terrible things. I used to vomit repeatedly throughout the day and be in so much pain that I couldn't speak or function. The only thing that would touch them were Sumatriptan injections.

I still get them but propranolol has made them less severe, and a triptan usually makes them go away but leaves me feeling super groggy, exhausted and depressed. The mini pill has also helped a bit.

I have so many triggers which are quite restrictive on my life: sugar, coffee, alcohol, strong smells, irregular sleep.

I've just been prescribed Rimegepant so am hoping that might help.

Ah migraines what fun
Mine are 1-3 times a year typically aura with no pain but severe visual disturbance to the point of not being able to see through the trip.
However the last one also had pain and was longer than normal, which was annoying

Thank you!! My local trust also. Off to order 😂

Oohhhh nice will try thanks

My consultant told me that ‘decaff’ isn’t ’no caff’ and to be careful with it. Some Decaff coffees eg M and S instant actually have enough caffeine in to set off a migraine. You would need to have ‘caffeine-free’ coffee to be safe, if this is a trigger for you. Likewise, a lot of medications have a fair amount of caffeine in and make things worse for some people,

On the subject of the worst migraine ever, a two dayer on hottest week of the year and low - pressure weather in 1990. I would have paid someone to kill me because I felt like my head was being drilled into and vomited uncontrollably. Luckily, Propanalol and triptans have turned the dial down on them but still get a week of them every months, even post - menopause. However, triptans wipe me out so I’m looking to try other options.
I also hate the photophobia, sensitivity to smells and neck pain. Basically, they’re crap but the modern medicines have made them more bearable and I don’t throw up on myself ten times like I did as a child.

Perimenopause is a migraine peak time. I didnt know this but found out the hard way.

I had one of my worst ones last week. I honestly thought i was dying. I toyed with calling an ambulance at one point. If I could have moved my head maybe I would have. I find triptans just dont really work anymore for me. Years ago 100mg of imigran and I would be out cold and wake up migraine free. These days there is no imigran, only generic and they dont help me anymore.

I'm on a waiting list for neurology to hopefully try some new meds. My gp will only give me triptans and I have tried every preventative going over the years. I have more pain days than non pain days recently.

I usually get the blind spots and neon zigzags, and usually lose some language processing ability, eg cannot remember names of people I know well and will be able to write coherently but not be able to understand words when reading. I was once unable to speak properly. I've also had odd memory/dream flashbacks during the initial stages.

I get a hangover lasting a day or two, with a funny taste in my mouth and pain upon moving my head.

Luckily, I only get a few per year.

I get silent ones quite often, where I am so sleepy and can't find the right words, normal things are a struggle. But when I get the headache too the pain in worse than labour. I find that ibuprofen, something sweet and caffeine can prevent the headache if I time it right.

I had cyclical hormonal ones in my 20s and 30s, weirdly improved after having children. They were relatively short but really severe, and a pp said, my worst one was treated like a stroke. Mine came back in perimenopause, and finding it harder to keep on top of them, the triptans don’t seem to be doing their job any more. However they feel more like migrainy-headaches rather than the full-blown migraines I used to have.

Once I was ended up on the floor of the utility room at the family fun Christmas party. Another time my husband found me laying next to the car because I never caught up with him to do the shopping (this was pre cell phones) since I had told him just give me a minute to get my bearings and I’ll join you. I stepped out of the car to start vomiting and afterward just collapsed.

multiple days of my life lost at a time, unable to do anything because if I move a muscle, the pain becomes unbearable and I vomit again.

Another one who vomits constantly for up to 9 hours, if I don’t get meds in me before I start vomiting then I don’t keep anything down and usually end up at the hospital for pain and nausea injections. However, I’m also another one now on the monthly injections which have been life changing! I only get around 2 migraines a year now, used to be 2 a week plus a constant headache the rest of the time.

I’ve always had what I now class as ‘mild migraine’ , flashing lights etc. nothing I couldn’t deal with with a cold cloth and codeine.

a week ago last Sunday I’d got into bed and was hit with a blinding pain in my left temple, then the room began to spin. I couldn’t move as any attempt at movement I fell over. The spinning was the worst thing and it became so bad I was violently sick. DP had to physically lift my head so I could throw up. It was utterly terrifying.

he called an ambulance and paramedics initially suspected stroke or brain bleed. 48 hours in hospital, scans and tests and the conclusion was a vestibular migraine.

ten days on I’m still off balance if I move quickly, fatigued and my head feels muggy. I’m struggling with sleep. Apparently this isn’t unusual for this type of migraine. I’ve been through a period of extreme stress and the consultant at the hospital thinks that was possibly the trigger. I’m signed off work this week and hope things have settled for Monday so I can return.

it really was the most terrifying experience of my life and I pray I never have another.

I never got migraines until I was about 40. After about 10 years they tailed off and I've not had a bad one since I was 60. I still get the visual disturbances sometimes. One of my worst was on holiday with a friend. I woke up in the night with a headache and feeling nauseous, and knew what was about to come - vomiting, diarrhea, intolerance to light, sweating, pounding headache...I didn't want to wake my friend so I went downstairs to the communal toilets and spent the rest of the night there, mostly sitting on the cold tiles (when I wasn't sitting on the loo or being sick in the loo!) I'm lucky in that once it's over, I feel pleasantly lightheaded so the next day wasn't spoiled.

Started getting migraines after coming off antidepressants. Namely, citalopram.

The worst caused my right eye to stop working and for me to lose all language skill. Couldn't speak, process words, or coordinate thought based on comprehension. It was horrifying. Lasted about 5 hours.

For two days afterwards, although I could communicate again, I felt entirely destroyed.

Whenever I get a starry aura now I just aim straight for bed and hope for the best. It has, thankfully been a few years now.

mine started in 2023 - I started to get aura and then it developed into daily / chronic and I was bed ridden for a few months. I’m now on daily preventatives but I found the cause - undiagnosed celiac disease. Sometimes there can be a cause to your migraines. Feel so much better now I’m gluten free.

My first was at 24 years old - couldn’t speak, was falling over, numb down one side.

became an acupuncturist at 40 as acupuncture cured my migraines and helped me get pregnant!

I have a 90% success rate at reducing migraines to a manageable level for my patients. Most just return sporadically when they can sense them starting up again.

My sight goes, i slur my words, unbearable headache, numb face and arms, vomiting, cannot stand bright light. Worst one had me hospitalised and i was given a lumber puncture as Dr thought i had meningitis.

Can I ask how old you are, please? I'm in my 40s and noting that mine seem to be changing as my hormones shift. I'm wondering what to expect as I head into menopause....

@Duchoftheterrace and anyone else who has vomiting with their migraines have you never been offered sumatriptain injections or a nasal spray triptain? I don't get vomiting very often with mine and only when I've been off preventative medication normally. But taking zomig nasal spray helps as you are not having to swallow tablets and rely on keeping them down.

Vestibular migraine! That’s what DH has every day. It has not been nice at all. Good that you got swift action, DH has been left on a waiting list to see someone. 9 months and counting.

One of my worst was 35 years ago. It lasted over a week. Relentless pain and vomiting. I probably should have been hospitalised but, back then, I had already been ignored and dismissed by so many doctors that it didn't occur to me to seek medical help. I thought I had to just ride it out.
What "cured" my migraine was a brain haemorrhage. Since then, I have them only occasionally.