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!

Ugh you have my full sympathy! They knock me sideways for at least 24 hours. My arms and legs go heavy, sometimes numb, I get dizzy, slur my words, sick, excruciating neck and head pain etc, can do nothing but lay in a dark room. I’ve suffered for 14 years and finally been approved to try the new injections and it’s been life changing! I’m so sorry you’re suffering OP, might be worth asking for a refferal to your migraine clinic?

Hello! I’ve had migraines since I was a small child. It’s only in the last couple of years I have a medication that works.
when I was in my mid-twenties I woke up in hospital after a migraine. It had caused a stroke. The neurologist explained that a stroke is a blockage or bleed on the brain and a very severe migraine can cause the same symptoms with the compression of the blood vessels. Or something, was 30 years ago now.
i suffered visual disturbances and numbness and tingling for months afterwards.

That sounds so awful! My arm and legs still still feels a bit on and off à week later. What is the injection!?

It’s called hemiplegic migraine.

It’s called “aimovig” I’ve had to trial more treatments than I can shake a stick at to be “eligible” for it but different trusts have different rules! I still get migraines but the severity and frequency has improved tenfold.

Always get visual disturbances at the start of my migraines … I get blind spots in my vision and then wavy silver lines move across my eyes. .at worst they looked like fireworks .
then the headache comes … but as I’ve got older it is the after effects that seem to last much longer now (50yrsold )
feeling sick, exhausted and not with it for at least the day after now too

Not me, but my husband has been off work since January because of migraine. He hasn’t had a single day since without one. It’s absolutely horrific to watch (obviously worse for him to go through).

He is on Rimegepant now and we hope it will free him and allow him to go outside or watch TV.

You have my sympathy. His is generally head pressure, eye pain, noise and light sensitivity, some nausea and aura.

When I’m heavily stressed I get them multiple times daily. It’s horrific. Mine are hemiplegic, my right hand can’t grip and I lose control of my right leg, I can’t lift it with my mind so walking is a challenge. Triptans make it far worse, I’ve ended up out for a week when I’ve taken them.

my neurologist gave me topiramate which helped, I also had to cut out gluten when having attacks which helped and lastly I had a daith piercing on the worst afffected side. Acupuncture helped me get the feeling back if done quickly enough - a day or so after it began.

I’ve not had multiple attacks in a while luckily, you have my sympathy. If they’re lasting a while or getting more frequent definitely see a GP to try preventatives. Keeping a diary of the most basic things, food, rest, water, stress levels etc made mine take it more seriously.

I had one whilst in labour… as if I had nothing else to worry about 😂

I think I have had / am having the worst one I’ve ever had today. Sumatriptan and ibuprofen normally sorts me right out, but nothing has worked today. Absolutely nothing. Then the pain / throbbing got so bad I genuinely considered calling 111. I lied down for about 2 hours and woke up feeling extremely nauseous. I have just been so physically sick. Just awful. Feel a bit better now but a bit of throbbing is still lingering. I don’t know if it’s my worst migraine ever or something else, but normally if it’s something else I wouldn’t have a banging headache.

Had them for years and they'd wipe me out for days, all stopped when gp prescribed propranolol...best thing ever!

I had today. Still having. My trigger is coffee ( I know sounds weird) or stress. Today I had a decaf coffee at Gail’s which I suspect was not decaf. I need to wait for 24 hours for it to leave my body.

I think mine are hugely exacerbated by stress and anxiety. I think taking propranolol might be the way forward for me although I already take 100mg of sertraline daily.

I suffered horrible migraines as a child. I r ended up in A&E several times as my symptoms were so bad, loss of speech, the auras etc. my family GP said you either get it from a young age to adolescence or from adolescence to menopause. True enough I grew out of them in my teenage years, I’ve never looked at the research.

Mine have been getting so bad recently (Hormone related), I'be been hospitalised as I'm so sick with them that I can't keep water or medication down. The other week I was sick 15 times before being admitted for IV fluids and anti sickness meds. I've got Zolmitriptan and some buccal anti nausea tablets now and yesterday I saw my GP who has put me on the mini pill (even though I have mirena coil) and has swapped out one of my blood pressure medications for another called candesartan which is also a migraine preventative. So I've got everything crossed this is successful

Mine are stress related as an adult

I went through a period of getting them every July at the end of the academic year when it all gets on top

One memorable year my boss phoned me when I was off ill because he couldn't work out how to run a crucial report. Like an idiot I got on my laptop to run it and send it to him, peering through one eye and squinting because my vision was disturbed

That made me feel so sick I projectile vomited all over the bathroom so violently I burst blood vessels in my eyes.

I have taken a strong anti histamine daily each evening this summer as I think mine are in part related to hayfever and sinus’ over reacting to pollen. The only time I have suffered for months now is the day I forgot to take it.

I get numbness down the whole left hand side of my body, including my tongue and even the back of my throat. I get vision disrupting aura. I also get speech issues and what I think I'm saying, I'm not. Postpartum I was trying to say my daughter's name, I could see the word in my brain but that's not what was I was saying. Dark room, naramig and sleep.

Thankfully I've not had one for a while.

My husband gets them frequently but they're manageable so that he can continue to work and can drive soon after the aura goes. When I get them, I'm fucked.

Meanwhile my husband got his first age 31.

Ive had migraines since about the age of eight, same time as I started getting boobs.

They start with seeing white spots, then the pain starts with a normal headache but it just gets worse and worse and worse and light hurts my eyes. I cant lie down because it exacerbates the pain but sitting up is so exhausting. Eventually the pain causes me to vomit and then the migraine eases but it is followed by several days of uncoordinated limbs that feel like they are being operated by someone else and difficulty getting words out, sometimes I slur.

No idea what type they are, I saw the school doctor multiple times as a teen but he was just not interested.

Perimenopause has definitely kicked them up a notch.

Uhrgh, I've had them 30 years. Frivotriptain takes the edge off but they can last 24 hours. Worst one probably when I couldn't move for 2 days.
15 years ago I cut out carbs sugar and they disappeared.

Im 56 and still suffer. Its shite.

Fellow aura sufferers! I urge you to try high dose vitamin b2 and magnesium plus omega 3 and coq10. The first two especially help me massively.

Info here: www.torbayandsouthdevon.nhs.uk/uploads/25396.pdf

I've officially been a chronic migraine suffer for 24 years. That's classed as more then 15 headache days a month. Just over 2 years ago I ended up off work for 6 months due to them. That's the worst I've ever been. I'm now taking a new drug call Atogapant, but you have to have tried a lot of other treatments first before they will give you this one.

I've had just about every other preventative going. I haven't tried the injectable drugs as my headache clinic doesn't have funding for them. I've tried everything else though including botox.

I'm the best I've been in years but still get regular migraines.

There has been a lot more research and drug improvement in the last 5or6 years and there are even newer options being developed. Getting access to them on the NHS can be difficult though.

I take eletriptain for my migraine and ibuprofen.

Hello,

I’ve had migraines since I was 3 years old. It sounds ridiculous but it’s true. My eldest has also suffered with them since he was 2.5. They can last for days and often the only thing that helps is forcing myself to throw up and then sleeping it off. When I get them, my head pounds and I have pain in my eyes, neck and shoulders. I sometimes get visual disturbances but most often feel like my head is going to explode and literally just want to squeeze it and bang my head against a wall to relieve the pressure. Noise and light are excruciating. Obvs I don’t bang my head but do often try to headlock my head/squeeze it for some relief.

I have regular Botox which does reduce the frequency but I still get them unfortunately. I only top up my Botox when the migraines increase in frequency.

Mine started after a concussion. The pain often starts in my lower back and travels gradually up to my neck and head. Always on the same side (which is the same side as my head injury). I'd be interested to know if others always have them on the same side.