Have I been mistaking migraines for headaches my whole life?

[saveourtrees]

I often get headaches when I'm poorly. But they stop me doing anything. I can't have the light on or look at my phone. I can't move because it's just such a strong pain.

Every headache has been like this, but are they actually migraines? how do you know?

The only reason I'm asking is because my sister said she was given cocodomol (sp?) for her migraines and paracetamol doesn't even touch the sides.
paracetamol doesn't help me either. Does anyone know how you can tell?

When I get migraines it's often triggered by social overload. My DH knows now that when we get back from a weekend with family he'll be unpacking the car while I'm crawling up the stairs. That's unless it's one of the ones triggered by hormones, not enough sleep, stress, dark chocolate, too much sugar, not enough sugar, another random unknown cause... Those ones can hit at any time!

I used to try to push through them but I discovered that if I get to sleep relatively soon after the "everything's out of sync" feeling starts then I can sleep it off without it getting much worse. If it gets to the "eyes feeling like TV static" phase I know I really need to get to bed. Usually once I'm in bed I can confirm whether it's a migraine or the start of a headache by whether it's actually dark when my eyes are shut... If it's a migraine then it feels sort of like sunlight shining through curtains even if it's pitch black in the room.

The other thing that confirms it was a migraine is how I feel afterwards. It can take anything from a few hours to a couple of days for me to feel completely back to normal. DH is too nice to say but I'm pretty sure he thinks I'm just making up excuses to avoid doing stuff but I just feel completely wiped - it's a bit like when you've had a vomitting bug for a couple of days & you just feel weak & need to recuperate. That's usually the time that I'm on my phone whinging about having a migraine - for me, it's all part of the migraine experience but I'd be over the "can't keep my eyes open" phase by then.

I used to find that caffeine could stave it off for a while but then I got addicted to Coke & any time I drink it now to stave off a migraine it's 50-50 whether it helps or just makes it 10 times worse!

I'm a bit paranoid about taking any kind of medication if I can avoid it because I frequently get side effects that I just don't want to deal with if I'm also nursing a migraine. I've never actually tried anything that's specifically made for migraines, I just tend to lie down until it goes away! I'm lucky that I have the luxury to usually be able to do that.

@DrinkFeckArseBrick

I spoke to a neurologist about this (when I was being treated for debilitating headaches). He said that whilst migraines can come with aura and sickness etc it doesnt always, and he classifies them by 'can you do anything else at all'. If yes it's a headache and if no then it's a migraine. But essentially the same muscles around the eyes and forehead cramping and the same type of pain

This is a really good description.

Also:
4)I often have a "hangover" the next day in which I feel... sort of scooped out and hollow. Like my own ghost
Is very much how I feel for a few days post-migraine

If I can take migraleve in time then I'm able to function enough for essential self care and, once, even a little light conversation(!) But I can only manage this with low light and sound levels, and gentle, cautious movements. Will still need to rest under these conditions for 48h.

@saveourtrees What you've described sounds enough like migraines to warrant a chat with the gp. The symptoms and severity of migraines vary hugely between individuals and, as some pps have found themselves, it can take years for people to recognise the initial warnings signs of migraine.

[quote 24hoursfromtulsa]@Lougle

Just posting to say that your whole post could've been written by me!. I too had chronic migraine (14 to 17 migraines a month). They ruled my life.

Tried lots of different preventative medicines and treatments but none of them worked.

Have been on Ajovy injections for nearly a year now, and they have changed my life. Not only do I get only 2 to 5 migraines each month now but the migraines themselves are much milder and go more quickly.

Costing me £700 every 3 months until I can hopefully get it prescribed on the NHS, but it's worth every penny![/quote]

Another here - I've tried everything. Literally! Before this, I was on Botox. But now, on my second month of Emgality, I've only had 2-3 migraines over those 2 months (hormonally related), and this is an incredible change from up to 4 a week. It's truly amazing.

I used to get hormonal migraines and stress migraines (when the stress stopped - at one point I used to reliably get them at 8pm every Friday night). I never had aura but I did used to puke a lot.

For me they were on one side of my head, around the temple area, and they THROB. Painkillers did very little for them unfortunately.

It's been many years since I've been a regular sufferer but I would definitely see your GP because there are some amazing new meds available now that can stop them in their tracks. Sympathy OP, it's really horrible.

Sounds like it could be migraines. My first migraine I thought I was dying. Couldn't speak, see, walk. Vomited, and eventually blacked out but only once my then boyfriend (who "thankfully" also suffered so knew what to do) found the correct volume in the radio. Too loud, awful. Too quiet, awful.

I burst all the blood vessels in my face, it was terrifying!

@hotmeatymilk

he classifies them by 'can you do anything else at all'. If yes it's a headache and if no then it's a migraine. It always makes me chuckle when I see people on social media posting “I’m having a migraine”. Dude, if you were you wouldn’t be looking at your phone, let alone able to post that. You’re having a headache, and possibly not that bad a headache because again, looking at a screen. I can’t even speak during a migraine!

One of my ex friends used to post on sm about 'powering on' through her migraines - taking the time to get her hair and nails done cos she's not gonna let a migraine stop her from looking her best, or driving the kids 20 miles each way to a 2 hour soft play party.

Like pp, never mind updating sm but I need dark and silence when I have an attack, and paracetamol/otc co-codamol don't come close.

The headache is rarely the worst part for me. Before I was on Ajovy, I had tried Propranolol (hallucinations in dreams) metoprolol (low blood pressure), amitriptyline (hallucinations in dreams), nortriptyline (racing heart rate), gabapentin (no impact), topiramate (fumbling and losing words), Botox (some help, but had to stop in order to have Ajovy).

Currently I take nortriptyline 25mg, ivabridine to control the heart rate, candesartan 16mg, vitamin D, melatonin (to ensure sleep), and Ajovy once per month.

I'm lucky that my Ajovy is NHS funded.

@UhOhOops 'powering on' is necessary sometimes - if I stopped every time I had a migraine (before I was on Ajovy) then I wouldn't have been able to parent at all. But migraine days were limited to bare essentials and the bare essentials weren't done well.

I find if I want to go to bed, I have to catch the migraine early. Once the headache sets in I just end up rolling around in the dark, trying to find the cool part of the pillow. Time goes slowly!!

A migraine specialist doctor told me the best thing to take is actually soluble aspirin. Seems to help me if I take it at first sign (I get an aura) and doesn't cause rebound headaches, which cocodemol can do.

@Indecisivelurcher

A migraine specialist doctor told me the best thing to take is actually soluble aspirin. Seems to help me if I take it at first sign (I get an aura) and doesn't cause rebound headaches, which cocodemol can do.

I was once given IV aspirin in A&E. It was amazing. I sometimes take 900mg aspirin in a glass of coke.

I try really hard to only take medicine if I absolutely have to, though, because if you take it on more than 10 days, they say it's rebound headaches.

For me the most obvious difference is that I feel nauseous as well.
There's other differences, such as flashing lights normally, sometimes blank bits in my vision, the place it starts (above my right eye), how it starts (sharp pain).

I get headaches as well and even with a bad one I can tell the difference.

@BakedTattie

I can tell. A headache is bareable. My migraines are centred around certain smells. And I can tell instantly if a smell will cause a migraine. It’s such an intense pain. I feel sick, and sore all over. I can’t open my eyes and have to basically just lie as still and quiet as possible. Migraines are horrendous

As a migraine sufferer there is sometimes a fine line between a bad headache and a mild migraine for me. I take rizatriptan for my migraines and if I take this and headache disappears it means it was a migraine.

I don’t get the visual auras before the headache but bizarrely get migraine auras without headaches. Sometimes I have nausea and other times I don’t. The inability to handle any light and the desire to lie down on a dark room is a constant.

I've been wondering this too. I usually get like a bruise like pain around my eye, so it feels like I have a black eye, then the headache comes. It's nor debilitating, in that I can getvon with things but I'd much rather be tucked up in bed with the light off. My head also feels really hot. I don't get any auras though, which I thought always comes with a migraine.

Sounds like a migraine to me.
I’ve suffered since I was a child. Headache and migraine are very different. I know if I drink a lot of water, and two paracetamol my headache will go.

Nothing really stops a migraine for me.

It’s not true for me that you can’t power through a migraine, I definitely have. Sometimes needs must.

It's also worth noting it may take a few different things to find your ideal solution. Someone recommended coke which is actually a migraine trigger for me so there is no one solution fits all

Migraines affect different people in different ways. I think it's only a small % of people who get migraines with aura and for me, the aura is the worst part. Once that starts I pop a bunch of painkillers and the headache is not normally too bad. The worst part is that for a day or two afterwards it does leave me feeling a bit detached and woolly, for want of a better way of putting it.

I am often able to work through them though, so it's not always the case that they are completely dehabilitating.

It always makes me chuckle when I see people on social media posting “I’m having a migraine”. Dude, if you were you wouldn’t be looking at your phone, let alone able to post that. You’re having a headache, and possibly not that bad a headache because again, looking at a screen. I can’t even speak during a migraine

I think there different degrees of migraine - not everyone has them to the same severity. I've had some aura-only migraines which are not painful at all but you get the lightning shooting in front of your eyes which is quite disconcerting.

I get regular one-sided headaches and sometimes I feel nauseous with them so they are very migraine-like. They are partly hormonal and another trigger is having a glass of wine after going for a run. It must be down to dehydration, although I do drink plenty of water.

I would definitely see your GP and insist on a referral to a neurologist so you can get properly diagnosed.
Unfortunately i suffer from something called Cluster Headache Syndrome, which im told is the worst pain known to medical science.
An attack has me screaming, foaming at the mouth, with my head on the floor and my ass in the air sliding round the room, crying swearing, sweating - its insane.
I can have up to 8 of these a day lasting up to 2 hours a time :(

I was misdiagnosed for 7 years of this , being told that its just a migrane and to try cutting out cheese etc haha.
I came to the end of my teather during one particularly bad attack and ran into A+E leaving my car running outside (dont know how i got to the hospital really !!) screaming for someone to help me and at that point i saw a neurologist and was diagnosed.
I cried as someone was actually taking me seriously at last !

I now have sumitriptan injections for an abortive when an attack starts, but the point of my post is that yuou really should insist on seeing a neurologist as only they can properly tell you whats wrong with you.
If it is migrane, then its caused by the same function as my condition and sumitriptan will definitely help you. Its tablet form for migrane, or nasal spray for serious migrane as the onset is faster.

Get your referral - dont get fobbed off !!

I sometimes struggle to differentiate between headaches and migraines.

I've never vomited as a result of a migraine but I do often get nauseous.
Light vs dark makes little difference. I can still read and look at my phone a lot of the time.
I almost never get an aura.
Never one sided pain.

I do often get the pre-drome and post-drome, and my lips go blue and I look totally washed out.

They usually last 3 days.

I tend to take a rizatriptan every 24 hours then try to carry on as normal. About 90% of the time that works. I wouldn't call it powering through, but I'm not totally debilitated either, usually.

Occasionally I do get the full blown horror - and nothing touches it. Absolutely awful.

I've tried all the preventatives except Botox and daith piercing. Most did bugger all. Seeing an osteopath once a month, taking a BP med and monthly Aimovig injections are keeping them down to 6-10 migraines a month, which for me is pretty good.

I guess migraines may be on a spectrum. For me there is a clear difference between them. A headache I can carry on as usual and don't necessarily take painkillers. Migraines - I get vision loss, they last hours and I have to sleep them off and don't feel any better until I've vomited. Touch wood, haven't had a migraines in years and I don't miss 'em!

Oh I also take Migravent which contains Vitamin B2, Riboflavin, Magnesium, Coenzyme Q10, PA-Free Butterbur.

I've been taking it just over a month and waiting to see how much it helps. So far the main result is that my pee is a startling yellow :-)

My GP recommended it. His daughter has awful migraines so he's very well read on the subject and has been a good partner in helping me deal with them.

My neurologist also recommended them.

@Trinacham

I guess migraines may be on a spectrum. For me there is a clear difference between them. A headache I can carry on as usual and don't necessarily take painkillers. Migraines - I get vision loss, they last hours and I have to sleep them off and don't feel any better until I've vomited. Touch wood, haven't had a migraines in years and I don't miss 'em!

I forgot the vision loss. It's so weird when you can't actually see everything in front of you. I occasionally get that before the pain, and I know it'll be a bad one.

For me it's triggered by sunshine on snow. I really shouldn't live in Maine...

[quote Inmypjsagain]@Mavisisnotmyname I know you say your trigger is headlights, but you say every few weeks, could it also be hormone related? I get mine monthly and it’s entirely down to my cycle- I also thought mine was triggered by late night driving, then cheese and then I realised when I started writing down in my diary the days I got them that it was pretty much 4 days before my period, it became more manageable then. Glad sumatriptan helps 😊[/quote]
I'm post menopausal and they coincided with the start of HRT which is also a trigger for migraines switched to patches which has helped so yes probably hormones are a factor. I haven't driven at night for a week and no migraines yet

I get migraines, recently diagnosed by the GP off a list of my symptoms, pain on left side of my head only, worse on movement and by light, nausea and vomiting. Paracetamol doesn’t touch the sides and I was having to take 2-3 days off work until it subsided. She prescribed sumatriptan for me which I haven’t needed to try yet but will hopefully work!

I know quite a few people who suffer regular migraines, and they all experience them differently so it's completely unfair to say it's not a migraine if it's not impossible to power through it.
OP have you tried using paracetamol and ibuprofen together? Or alternate them 2 hours apart, so you only take one dose of each every 4 hours but they overlap iykwim.