Hardcore Migraine Sufferers Unite

fuuuuucccckkkkkkk

it's better now than it was this afternoon when i was using frozen berries as an ice pack over my eye, but still.

Anyone here get classical migraines, the kind with visual auras? I had an awful headache last night that had me barfing at 11pm, but it wasn't near migraine-strength. My wife gets classical (vomitatious, light-sensitive, worst-pain-ever) migraines, but she can stop them with ibuprofen within 10-20 minutes of aura onset. The aura seems like just such a peculiar thing, I think. Wifey says that it's like a portion of her visual field is blank, nothing at all, not a distortion of other stuff or anything. How would other aura-experiencers describe it?

I got that visual aura every day for a week straight last month! (I hadn't had one for around five years.) The blankness is weird and distracting because it seems like the stuff you should normally see must be behind it somehow, so I'd keep trying to focus on it and see past. It was really intriguing and interesting the first day, but then I realized that it would be followed by a horrible headache 15 minutes later.

Mine weren't "classical migraines" though, there was no nausea and they were pretty obviously a sinus problem. A week of constant ibuprofen & sudafed on top of my allergy medicine made them disappear. Only I forgot to take the allergy medicine yesterday and today I've got a bit of a sinus headache...dun dun dun!

(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.

I get them very rarely, and when I do they are largely silent - I've only ever had one full-blown migraine, so at least I do know what's it's like to have a real one, but I had an intermediate one on Wednesday for the first time in maybe 3 years and it fucking sucked. It started off as a silent migraine with my right eye just completely aura-ed out couldn't see anything but shimmering then that wore off and I felt like someone was stabbing me in my eye for a few hours til it stopped hurting enough I could go to bed. I had some cocodamol and weed and turned all the lights off which may or may not have helped at all. Woke up the next day with a sore eye but it was gone by lunchtime thank fuck.

I get them once every week or two. i used to take imitrex but it made me have them three or four times a week so now i take nothing. it's not really sustainable, i need to start on something to prevent them.

Having a quick scroll through this thread ... Plasmon is a hero!

UK question: are Sumatriptan injections and Oxygen cylinders available? Bit worried about Brexit and the Covid world breaking me during the next cluster ...

What is plasmon? is that Aimovig?

Plasmon is a contributor to this thread. A neurologist, if I recall correctly? But genuinely appreciated.

Oh, I see. I should have checked the thread instead of googling "migraine plasmon" - everything that came up was aimovig-related, so I was hoping you'd found a miracle cure.

Might be worth saying what is going on for you and seeing if others have ideas? Equally, understandable to not say.

(Apologies if you have done and I've not clocked that).

I get migraines without aura every 1-2 weeks. Up until I was 20 or so, I'd get them mostly on weekends, then I got put on imitrex and they fairly quickly went up to 2 a week, which gradually increased to 3-4 on bad weeks. I was fairly sure the imitrex was to blame, but if I tried to go off imitrex the migraines would be so bad I'd end up taking it eventually. Finally went to a headache clinic, where they diagnosed medication overuse headache and helped me get off the imitrex. They also gave me some supplements - SAM-E and boswellia mostly. So now I'm back down to a migraine every week or two, and I don't take anything for them, just wait them out. They last about 36 hours usually. It's better than it was, but it's not sustainable and I need to take something to prevent them.

Other things I've tried - birth control, which decreased the headaches but made me intensely anxious, also I'm getting to the age where it's not that safe to take it. Beta blockers - made me feel weird and didn't work. Magnesium - makes my heart skip.

Things I don't want to take - Topomax. I teach English and French for a living; the last thing I want is a heavy-duty drug that makes you forget words.

That sounds rough Lily. I really hope you find something that works.

Hello. Can understand not wanting to use Topomax (Topiramate). Hope someone here has ideas ...

Thanks! Honestly I'm still so grateful not to have them several times a week anymore, and the actual migraines could be a lot worse - they don't make me throw up or give me a lot of weird side effects; they're mostly just pain. But it does make it hard to hold down a full-time job.

Highly niche question: is there an optimum place for injecting Sumatriptan for Cluster Headaches? I'm thinking in terms of speed, effectiveness and lack of injecting pain. The instructions suggest the thigh (and the illustration shows the right thigh ... which I realise I have always used).

i don't know but i got prescribed sumatriptan pills a few weeks ago, and today i felt one coming on, i took a pill, pottered around a little, took a 15-minute nap, woke up, and.... it was gone?! could have been a number of factors (was it really a proper migraine coming on; was it the paracetemol i took; was it a mild one; has the fact i haven't been drinking coffee for two weeks helped) but i'm going to take the W

The Sumatriptan pills are still working for me, pretty much like clockwork. it's astonishing. the only problem is that they take almost exactly two hours to have any effect. so that's a big part of my day still fucked up.

My doc has now recommended I try taking Propranolol (lol) prophylactically, every day. Which I am doing. Sadly in the first 10 days of taking it I have had 3 migraines, more than my usual average :(

That’s good to hear. Sumatriptan has been working well for my partner too. Also: quarterly Botox shots have really reduced even the onset of migraines.

!! 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?

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.