Hardcore Migraine Sufferers Unite

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.

It seems that sinus infections and migraine attacks are sometimes hard to distinguish. I can just say: since July I have had both and IT FUCKING SUCKS. Had migraine attacks all my life of course. Last couple of says I had it so bad, I threw up. FUCK THIS SHIT. I am so fed up with feeling so bad. There are moments I feel mildly sick and then I'm HAPPY. hah.

that discussion the other week about pressing eyes to produce phosphenes prompted me to do a little wikiresearch on migraine auras, and some of the artists' renderings give me chills just looking at them. gnarly stuff.

http://i45.tinypic.com/34hg9ad.jpg

it's like seeing THE RING except instead of dying you get to look forward to a day of solitary confinement and barfing and having a dump truck cruise around on your skull.

hi i'm the suffering angel here to remind you about your impending suffering, enjoy the show loser

http://i46.tinypic.com/2m50w7o.jpg

also apparently aura artists only get auras when they're on vacation (?)

Dear migraine auras: PLEASE FUCK OFF I would like to leave work and go home but I can't navigate the tube with giant glowing neon snakes taking up half my vision.

hot tip somebody gave me feminex for a migraine and this shit is goood

I just got an email where she called it "the wicked deadache" - which I know is a typo but it just absolutely describes it so perfectly.

I've been getting opthalmic migraines lately. All the neon snakes without the headache later.

!! I will ask about this. Also about the nasal doses and/or injections of Sumatriptan. Also about the O2. And apparently there are other prophylactics. Though maybe Propranolol takes a while to build up? Not sure about this.

I find Sumatriptan injections incredibly effective for Cluster Headaches, although can't always take as frequently as needed. They work in a few minutes rather than an hour or so.

Oxygen can also be useful though I've sometimes wondered whether it's sometimes just delaying the inevitable rather than aborting the headache completely.

If migraine rather than Cluster Headache there is a new medication in the UK - I think you have to have kept a headache diary to be evidence your need.

I have never really understood the difference. My GP has never introduced the concept of “cluster headaches” to me. I don’t get auras but I do get congestion, light sensitivity and occasionally nausea.

I need to try and fail Topomax before I can get approved for Botox. I have been putting it off because I'm scared of all the Topomax side effects, which include brain fog, forgetting words, and kidney stones.

Tracer - might be worth looking here, if you haven't already: https://ouchuk.org/

Lily - those side-effects always sounded too scary for me and (rightly or wrongly and not a medical professional) I've always turned it down and I've always had that decision respected.

Thanks djh. I took the quiz and it says it thinks mine are more migraines.

It's not that the decision isn't respected, it's that you don't qualify to have certain medications covered by insurance until you've tried and failed a certain number of types of medication that are cheaper and more common. I haven't tried enough preventive meds yet to qualify for Botox or aimovig, so my reluctance to try topomax is really what's standing in my way.

That sounds hard-going. Was writing from a UK perspective where there was a bit of pressure to take it but managed to argue against it, as the symptoms would feel intolerable re work.

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?