Hardcore Migraine Sufferers Unite

(vomitatious, light-sensitive, worst-pain-ever)

this is me. i do get auras too but the light sensitivity is worse because it hurts even to keep my eyes open.

I have coloured "spots". Usually a sign of impending attack. :-(

I didn't realize my sensitivity to light was in connection with my migraines. Just thought I was sensitive cause i had blue eyes.

I believe that what separates a non-classical migraine from a classical migraine is the aura. The other symptoms, like light-sensitivity, are what makes it a migraine instead of a bad headache. Correct me if I'm wrong, though.

Just had the most horrible one: nausea, chills, sweating, and of course MAJOR headache.Lots of fun if you also have to breastfeed: This means not being able to sleep 24 hrs straight and no chance of popping pills. :-(

ok now i have been having soft headaches to fullblown attacks. on top of that i am sometimes close to FAINTING and also seem to have a numb feeling in my face. granted it is on one side. hurrah.... i guess. urgh

this has been going on for a few weeks. really fun with screaming kids around you.

Get to the doc's Nathalie, unless you already have been.

Just had the most horrible one: nausea, chills, sweating, and of course MAJOR headache.Lots of fun if you also have to breastfeed: This means not being able to sleep 24 hrs straight and no chance of popping pills. :-(

― stevienixed, Wednesday, 2 July 2008 01:41 (8 months ago) Bookmark

^^^can you pill up these days? because a doc should be able to sort you out pretty easily (talking from my simple but limited experience of suffering these horrible fuckers, going to the doctor, being given something to take whenever i get the slightest flinch of a headache before full on migraines kick in and then i be safe.)

ayo bad day for me today

i've been getting mild migraines for the last few days while i titrate to a new medication. the msg boards say this is normal.

nope havent been to the doc. i tend to take migracaps. these are pills concocted by the local pharmacy. guess i shld visit the doctor. off to barf (half joking)

I've been to the headache clinic at the neurology dept. of a big university hospital (UZ Leuven), told them all about my 20+ years of pain (every first day of any holiday and every Saturday I was guaranteed almost banging my head against the wall from The Claw - some sort of unbearable force that pushed my eye and teeth and temple (alternating sides), even saw and heard less clearly during one of the attacks), and after listening for a while they said "try this beta blocker, it'll soften the walls of your facial veins (or something), and they gave me a prescription (first Emconcor Mitis and later the cheaper but identical Bisoprolol Teva) and I've got my life back! I don't care if I have to take one of these pills every day for the rest of my life and go to the doc every half year for a new prescription, I'm not waking up in the middle of the night from the headaches anymore! Haven't had any since! Woohoo!

So, in short: if you give up and accept (like I had before I'd had enough), you won't find someone who can help you.

(they couldn't actually tell me if what I had was migraines or cluster headaches, I had symptoms of both and also symptoms that pointed away from both)

Ophthalmic migraines, yuck yuck yuck. What on earth can be done? They're so invasive, it's like someone dropped LSD in just one of your eyes, hardcore hallucinations that slowly spread across your visual field.

Third one this year, they are definitely getting more frequent.

It's a good thing I don't drive, because I would definitely cause an accident if I were on the road and one of those things happened.

Is there anything that can be done except lie down in a darkened room and wait for them to clear? I've just dosed myself with a load of codeine so now I'm feeling sleepy as well as visually fuX0red.

man, today has been crazy. i'm not the only one iether.

I'm finding that I'm getting less warning, and the migraines are more severe. And they've gone from sometimes having aura to always having aura. I don't know about "LSD in one eye", but mine look like huge flashy neon lightshows in both eyes. But they don't last longer than a couple of hours. Oh, also sometimes accompanied by urge to throw up.

I mean, like, totally trippy and multicoloured and flashing and neon. This time it has an actual headache with it - not a severe one, but annoying enough. First time it's come with a headache, usually I just get the hallucinations.

Actually this is a pretty good approximation...
https://www.youtube.com/watch?v=ucQK4ve7_4g
er, without Estelle and the Ting Tings fortunately.
Coincidentally I was in the middle of a migraine while I was watching the Brits 2009, and had to check later that their performance actually looked like that.

Mine look like this - but FLASHING and glowing

http://farm4.static.flickr.com/3180/2527795092_b7023934c8_o.jpg

So I have been battling nausea and headaches for about a week now. So bad I literally cry. I thought I had sinus infection but after checking up on the internet (yeah yeah yeah shut the fuck up), I read an article that said a lot of people are misdiagnosed. Apparently this is a NEW TYPE of migraine attack I have! HURRAH! It's the same but not really. Maybe I should check the headache clinic like Stan cause this shit is really bothering me.

What do you guys who are not self-employed do? Do yuo stay home? I mean, I do of course but that's cause, well, I can because I don't have to tell my *boss* (who's my mum, she's the one who passed it on, hurrah).

It's great fun waking up all the time.

On top of that hjaving two kids+migraines -> SO NOT FUN. I gotta help out my husband a little in the morning and that's sheer hell. Try ding that when the kids are SCREAMING!1!!! Urgh. I am not angry at'em but there have been moments where I nearly cried begging them to be quiet.

i've had one for the past week; pretty sure it's hormonal in nature. it keeps returning at night while i'm trying to sleep.

Yeah. There used to be a time, I'd just sleep through it. Not anymore. I continuously wake up because of it (and nausea). I still don't feel that well. Hopefully just hormonal and it'll go away in a few days. :-( I really don't know what to do. On the one hand I do not wanna take heavy meds but a life of this?

hey i just learned that imitrex has gone generic now, so if you were avoiding it because of the cost, you may find relief. it's also easier to break in half, as the 100mg are way too much for me. this is pretty much the only drug/thing that helps my migraines.

oh stevie that sounds like the worst kind of waking hell.

I talked with the doctor. As usual I give a really fuzzy description of my symptoms. I can't help it, I'm stupid and I forget how migraines feel like as soon as they are gone. So he gave me Ibuprofen 600 (?) and something against the nausea. Now I understand why painkillers do not work if I have a really bad attack: your stomach apparently just clenches up! WTF.

Of course it doesn't help that I have a fucked up sleeping pattern. :-(

I also discovered that migraine attacks, depression, anxiety and panic attacks are connected. Sadly no way I can connect it with my stupidity. heehee

huh. for me they are almost totally hormonal or triggered by food/drink. for instance, i drink red wine all the time, usually a glass with dinner every night. this doesn't cause me any trouble. i decided to buy a bottle of chianti because it was on sale and looked fancy. i drank 1/2 glass, less than i normally drink, and was seized with a world class migraine the next day (yesterday, hence my post). i could sort of feel it coming on, but didn't recognize what it was because it was unexpected.

maybe i'm just not very well educated about migraine triggers, but i didn't know that different kinds of grapes can have different effects. i feel better now, but i had to rest for the first half of yesterday because i thought i was seriously gonna barf.

Now I discovered something I have been suffering from which is related to migraines: VERTIGO. Apparently the extreme dizzy spells I have, are in fact a part of my migraines. This morning I was literally swimming in my head. I would get up but it would feel as though my body kept swing to the otehr side. Ek. Does anyone suffer from this as well and if so what do you do against it?

I have also cut back from Coke Light. Hopefully it'll help with the migraines.

Actually this kind of indicates I have more migraine related eps than in the past. :-(((((((((( Time to call a specialist? My mum thinks that I'm popping meds like crazy and has suggested I contact one. But I'm only taking a Ibuprofen now and again.

I don't have migranes but I have Meniere's (they think), something equally debilitating when it attacks. I get vertigo so bad I can't walk straight, and I also get awful nausea and throw up. And my left ear rings so loud I can't hear anything else. The last time it happened my friend from home and I were up at my college town for NYE, and just as we arrived at my friend's house to crash I quickly introduced them and then stumbled to his bathroom and threw everything up.

Is it like walking around slanted? I have that in periods. It feels like I am walking crooked. SometimesI just got to hold on. Thank god I do not have the throwing up (well, I do but VERY rarely and only after a terrible clusterfuck headache). I also have mild ringing in my ear as well as really terrible toothache which my dentist tells me is due to anxiety.

God I feel like a loser. Well, I know it's partially hereditary but it's definitely also anxiety. :-(

So there is nothing they can do about the Meniere? Does it happen often?

Sweet fucking jesus, this is like the worst pain ever. And the feeling like I'm going to be sick, the pain is so bad.

It started just before I went to bed, and got so bad in my sleep that it actually woke me from a deep sleep.

I feel like I've been shot in the temple, it's an explosion of pain, feel like I'm going to be sick, visual distortions, ow ow ow, I can't stand this.

oy, kate (and stevie, slocki, etc). i've been there.

i think i mentioned this on another migraine thread, but mine are induced by exercise above all. so things which i love doing (and which are pretty key to physical & mental health) like going for swims, or playing basketball, or cycling to work, now have the specter of impending agony hanging over them. there are days when zolmitriptan right after the exertion does the trick; other days when it doesn't. i've had them so bad i ended up in emergency rooms, desperate for some relief. sometimes just walking to the ER and sitting in the waiting room, with at least the sense that someone (in two hours time, in four hours time, in six) may put an end to it with some anti-epileptic IV drip, is a slight relief in itself. NOTE: one of the meds they administer for nausea is called phenergan (or reglan). some minority of the population (er, like me) can develop severe anxiety attacks when given this. a horrific experience, especially when you have no fucking idea what's going on.

an interesting read on the science of migraines: http://www.scientificamerican.com/article.cfm?id=why-migraines-strike

of course the ER is really a desperate measure... not very fiscally sustainable.

Although it's interesting to read about cortical spreading depression, it certainly doesn't make the fuckers any easier to bear.

My mum suffers terrible migraines triggered by caffeine. I just hope that that is not in the post for me, as I age. These really are something that have developed over the past couple of year, but I've no idea what the trigger is. I didn't consume anything today that I haven't consumed a hundred times before.

agreed. "cortical spreading depression" is almost a trigger in itself, as phrases go.

It's still not gone. I've taken so much medication that I can't feel my face, but I still feel like something has blasted a hole straight through my right front cortex.

Can only look at the computer in two minute bursts before closing my eyes, and have been wearing sunglasses to walk about the house. Can't listen to music, feel too ill to eat. I've had to call in sick to work because computer monitors, telephones, are all just instruments of pain.

I feel like a hypochondriac old lady now. Seriously. :-(

re: Meniere's it used to hit me at any time/any place, monthly at it's worst, and would usually last the entire rest of the day whenever I got it. Luckily more recent attacks have worn off in a few hours, and I haven't gotten one in about 7 months.

Whoa! I looked in the mirror at the peak of a migraine aura earlier. Bad trip, man! I couldn't see my left eye, and the right side of my face seemed to have a massive dark crease under my eye and then a glowing bump which loomed out of the dim haze of the rest of my vision. Thought it was light reflecting from the window but shifting my head around didn't move it away from my cheek. Blugh.

And then I went to bed, which is probably where I should still be, because it still hurts even though I can see again now.

(PS I am not on any drugz of a psychedelic nature)

I've never looked in a mirror during a migraine - I get the big neon lightshow auras - but I'll give that a go next time!

shld give it a try as well. but usually i cqan't really see properly: vision seems to have lacy curtain over it. like now. uuuurgggghhhh

Lacy curtains? My aura look like this:
http://tv.cream.org/lookin/totp/setdesign.htm

...which is kind of appropriate as I spent a lot of my childhood watching Top Of The Pops.

I just have difficulty seeing.

Honest to god, when I don't have a migraine, I can hardly explain it. Mostly I can remember "please let me sleeeeeeeeeeeeep"

I get the lacy curtain thing, or at least a general fuzziness with a blind spot covering or just to the side of my focus (so I could lie down and look at one foot and not see the other right next to it, or if I'm trying to read I can just about make out a word at a time but can't see the sentence), hence staring at face-reflection and not being able to see one eye.

After a bit of that, the blind spot usually turns into something like a transparent sliding block puzzle rearranging itself in front of my eyes, or sometimes I get a small block of tiny shards of colour shifting around, kind of like if these tiles moved:
http://img44.imageshack.us/img44/7237/wattsstructure.jpg

Interesting that everyone's seems different. Also I'd like to know if my blind spot or face-numbness is always on the opposite side to the headache side, but, you know, not by having enough migraines to notice that kind of thing.

i've never had migraines before but this morning i got this really weird visual blurring/clouding effect towards the right side of my vision. lasted for about 20 minutes probably, got progressively worse then went away.

shortly after a headache on the left side of my head came on, and has been pretty strong for the past hour now. accompanied by general "i feel like shit" symptoms that weren't there this morning when i woke up.

brief online research suggests this might be a migraine? ughh

If it persists, go see a doctor, Mark. No need to wallow in migraine misery. Hugs. Migraines suck ass.

this sucks. i am on day 3, responding only intermittently to medication.

Well I'm on Propranolol (lol?) and no migraines for three weeks. So that's pretty good. The problem is that they're beta-blockers, and they are making me very... tired. When I go for a run my legs feel soooooo heavvvvvy. And I gotta get at least 8 hours of sleep, my normal quickie sleeps are not cutting it. So I'm kinda not really happy about that! Also not happy with literally taking a pill every day for the rest of my life? I was hoping I'd be in my 60s or 70s before that stuff kicked in

Would tolerate taking a pill everyday but would struggle with something that made me feel sluggish.

well i shelled out for a private appointment from the National Migraine Centre. they are going to put me on a different triptan - Eletriptan, which last longer and works faster. They are also recommending that whenever I take a triptan I also take 900mg of aspirin, two paracetemol and 10mg of Metaclopramide , which will act to flush the triptan away from my stomach and into my bloodstream more quickly. I am excited!

They are also going to wean me off the Propranolol, which as far as I can tell does nothing for me apart from make my legs feel heavier when I go for a run. However they do say I need something preventative, which they say for me will be something called Candesartan, which is apparently safer than some of the alternatives which can also make you groggy. idk man

They also said my previous dosage for Sumatriptan was too low, that I was taking an amount that would be prescribed for a teenager ¯\_(ツ)_/¯

I'm not a fan of triptans myself. I took sumatriptan for years and it gave me rebound headaches and made me feel super weird whenever I took it. Hope the new one works for you though.

Now they've got me on Ubrelvy, which is new and expensive and also seems to trigger rebounds, though apparently that's very rare and I'm just unlucky. It doesn't act as instantly as sumatriptan, but it also doesn't have any noticeable side effects, which is really nice.

That said, I'm home from work today because my migraines don't seem to want to respond to meds this week. It's been a relatively good couple of months so I was due for it.

sumatriptan has never worked instantly for me, at least not in pill form. i can usually time it to like 2.5 hours on the dot. no side effects, really magic, but day still half ruined.

Sumatriptan started out being pretty instant for me, but as my body got used to it, it got much slower and sometimes wouldn't work at all. At one point I had the injectable kind in case I needed it to be fast-acting. But whether it worked or not, it always made me feel slightly poisoned. Glad to hear there are people it doesn't have side effects for.

I've got Sumatriptan injections for Cluster Headaches and they really work (unless I have more than two headaches in a day and so can't take).

I've an acquaintance who takes Eletriptan (Relpax) for migraine and it seems effective at treating pain. They recently tried a new injection (not sure of the name) which reduced the headaches but had loads of side effects on their stomach. In the UK and they had to previously have tried 3 different treatments before they could try the injection.

yeah there’s also something called like… anti-CRG? something like that? that you can only have if you’ve tried all the other shit.

https://www.nationalmigrainecentre.org.uk/understanding-migraine/factsheets-and-resources/anti-cgrp-treatment-for-migraine/

It depends, at least in the US. Ubrelvy is an anti-CGRP medication, and I didn't need to fail all the others to be prescribed it, but if I want one of the preventive ones like the aimovig shot, then I will have to try topomax and an antidepressant first.

what was it like?

My new migraine doc has also suggested some or all of the following, as preventative, in addition to the Candesartan

- Magnesium supplements. Magnesium citrate, glysinate, oil spray or epsom salts

- Vitamin B2 (riboflavin) - 1 400mg tablet once a day

- Co-enzyme Q 10 - 100mg THREE times a day for a minimum of 3 months

- Vitamin D - 3000-5000iu daily

- Migraea probiotic

Needless to say I hate my migraines and want them gone but I am a little reluctant to start a regimen of like many pills every day

Eletriptan, which last longer and works faster. They are also recommending that whenever I take a triptan I also take 900mg of aspirin, two paracetemol and 10mg of Metaclopramide , which will act to flush the triptan away from my stomach and into my bloodstream more quickly. I am excited!

I got a chance to try this new regime and it worked great - headache gone in about 40 minutes

My migraine doc also put me on a lot of supplements - mainly Sam-E, Boswellia, and B-12 - but I'm really bad at taking any except the Sam-E regularly. It also turns out I'm sensitive to magnesium and it makes my heart skip, which is frustrating as it's in a lot of supplements in trace amounts, so if I take too many assorted supplements at once I start to feel it. So the many supplements approach is not for me, but I understand it works for a lot of people. My uncle swears by riboflavin.

I've decided that I'm only going to take one supplement at a time so that I can tell if any of them have any effects. I've started with the riboflavin and it has turned my pee EXTREMELY yellow.

(No other effects noted...)

Today I start Candesartan. I didn't think the Propranolol did anything but in the wean-down period, which took a month, I had more migraines, as well as more... not migraines, but just kind of normal headaches - except not brought on by anything. Quasi-migraines? Pre-migraines? Anyway I guess the Propranolol was doing something? Or my body had developed a need for it? Which scares me.

My eletriptan has sadly become less effective. I've been told the anti-CGRP medications are the "king" of migraine meds but they are expensive so the NHS won't approve them until you've tried three (3) prophylactics and two (2) acute medications, which is... basically.. almost the boat I'm in now. They will cover the tablets, which you can take every other day. There are also injections which you can do like every three months which sounds freaking amazing but they aren't covered. Anyway I'm hoping I can get on this train. Last month I had 9 migraines which really isn't ideal.

Just saw you asked about Ubrelvy upthread. I like it! It's much subtler than a triptan; you don't feel it hit your bloodstream and start working, but also there are no side effects, at least for me. It doesn't always fully take away the migraine; like imitrex it works better when taken immediately, but I can rely on it to cap the migraine at a certain level of pain so it never gets worse than a bad headache. I do think it causes rebounds for me just as the imitrex does, but since there are no side effects, it doesn't bother me to have to take it every two days; the only danger is running out of pills or insurance deciding they're not going to cover it after all.

Thanks for that review. Yeah I have to admit there is something almost euphoric about the triptan effect when it works. It's like coming up on a pill. Suddenly this cloud that was weighing you down just isn't there anymore.

I will also admit my migraines these days tend not to be totally debilitating. I can grit my teeth and get on with whatever. It's hard work but.. doable? Maybe I should just declare victory? idk.

It turns out that anti-CGRP meds are not covered in my area. Getting them privately would cost about £250/month. That would be taking a pill every other day indefinitely, and if I get a migraine on an "off" day, taking one then as well. Which I would totally do if it worked but the cost is just too much.

So I'm "cold turkey" on prophylactics, just raw doggin it, which is resulting in 4-6 migraines a month. The triptans still work though. I know a lot of migraine sufferers would gnaw off their own arm to be in the same boat so I should probably count my blessings but I still feel vaguely cursed and of course it's hard not to be anxious and wonder if it's a symptom of some other deeper thing.

My migraine doc told me that in her case (she is a migraine sufferer) that changing the amount of sleep she gets, even by an hour, plus or minus, is enough to trigger one. Which is wild. Sleep is kind of the last frontier for me, I still haven't really bedded in a good habit of going to bed early. I should do that. What if it actually worked?!

What has helped some is making sure I stay hydrated. Like really turning into one of those people who has a water bottle with them at all times.

My migraine doc told me that in her case (she is a migraine sufferer) that changing the amount of sleep she gets, even by an hour, plus or minus, is enough to trigger one. Which is wild. Sleep is kind of the last frontier for me, I still haven't really bedded in a good habit of going to bed early. I should do that. What if it actually worked?!

I'm told that I suffer from cluster headaches rather than migraines, but sleep is one of the few triggers I can detect. It's more likely to occur on days when I am awakened an hour or two before my normal hour by my cat or partner, and fall back asleep or doze. I feel like that interruption is what does it, because the the beginnings of my headaches two hours after I rise feels a lot like grogginess/lack of sleep. But then again, there are days where I slept fine and woke up feeling like I had a normal amount of sleep, only to start feeling yawns and a headache a bit later in the day.

It's wild how vital sleep is yet how little we can control whether it's satisfying or not, no matter how many bedtime tips and tricks we employ.

slightly grifty posts on this blog here, but this guy seems pretty convinced that for a lot of people it's about neck alignment

https://themigrainedoc.substack.com/p/4-signs-your-migraines-are-coming

"This is why I recommend pairing upper cervical corrections with recovery time and vagus nerve exercises."

triptans just fuckin WORK for me, feel v v lucky

My migraine doc told me that in her case (she is a migraine sufferer) that changing the amount of sleep she gets, even by an hour, plus or minus, is enough to trigger one. Which is wild. Sleep is kind of the last frontier for me, I still haven't really bedded in a good habit of going to bed early. I should do that. What if it actually worked?!
I'm told that I suffer from cluster headaches rather than migraines, but sleep is one of the few triggers I can detect. It's more likely to occur on days when I am awakened an hour or two before my normal hour by my cat or partner, and fall back asleep or doze. I feel like that interruption is what does it, because the the beginnings of my headaches two hours after I rise feels a lot like grogginess/lack of sleep. But then again, there are days where I slept fine and woke up feeling like I had a normal amount of sleep, only to start feeling yawns and a headache a bit later in the day.

It's wild how vital sleep is yet how little we can control whether it's satisfying or not, no matter how many bedtime tips and tricks we employ.

― blatherskite, Friday, 5 December 2025 15:55 (one month ago)

I've quite frequently heard people with Cluster Headaches recommend waking up at exactly the same time everyday (and not shifting that when the clocks change).

Not related but I used to get Cluster Headaches every two years, almost to the day ... but have had a decent break from them. I did hit a point where my regime was to use Sumatriptan injections (I'd previously used Oxygen ... which gave quick relief but I started to wonder if it was related to rebounds of headaches).

It's more likely to occur on days when I am awakened an hour or two before my normal hour by my cat or partner, and fall back asleep or doze. I feel like that interruption is what does it, because the the beginnings of my headaches two hours after I rise feels a lot like grogginess/lack of sleep.

i feel like I could have written this. absolutely this. same with falling asleep on planes or trains. it's extremely likely to result in a migraine just a little while later. I sit on the plane petrified, trying to keep my eyes open!

I've started to notice a little mini-pattern that I get them the day after lifting weights. I am starting to suspect that neck and shoulder tension from the stress of squats, shoulder presses etc is contributing. Of course I also don't get enough sleep, so I'm not letting my body recover properly either.

So for the last two weeks I have been lifting about half of what I usually do, and sleeping at least 7 hours a night. And.... it's working! Only one migraine, and that came after the one day where I didn't get good sleep.

I've also been going to the sauna at least once every three days, sometimes more. No idea what effect that's having but man it feels good