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.

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.

My mum is urging me to go to the doctor about them, as they seem to happen with increasing frequency. But I'm not sure that doctors can do anything about them. They're annoying, but not incapacitating, they tend to last about 30-45 minutes. But my head does feel like it's been washed out with battery acid afterwards, even if it's not a headache, it definitely leaves me unable to function properly for hours afterwards. Like, looking at screens becomes really difficult.

So. Beta Blockers. Do they work? I've been given a prescription for them but I'm nervous to start any long-term medication again. It's called PropranoLOL which makes me LOL.

I like the sound of something that stops anxiety as a side effect, but don't like the sound of something that makes you tired all the time and gives you crazy nightmares.

Anyone?

i've had like three migraines in the past two weeks (and one more migraine that i was able to get rid of in the aura stage). but reflexology does help, kinda...

http://www.livestrong.com/article/12881-use-reflexology-migraines/

i was able to get rid of in the aura stage

I always get the headache first for 15-20 minutes, then the aura starts up. Maybe that's because my main trigger is a blocked sinus.

i have bad sinuses too but my sinus headaches are distinctly different from my migraines. it's another set of pressure points, and my sinus headaches have no aura.

Kate, I have heard great things about betablockers but I am weary of'em. I mean, shit, those are some strong meds. My neighbour once fell asleep at the table with his bookkeeper. lolol

Now I don't know what'what: sinus or migraine. I thought I had a sinus problem but no gunk came out. :-(
I do have to say that now that I am antidepressants, I feel a LOT better. Less migraine attacks due to less stress. YAY. I think they put some speed in my meds cause I love to work.

i have this. had an op a year or two ago for my sinuses as they said it was a deviated septum but it helped a bit, and now its bad again. doctor wants me to get another op but ive been putting it off as i dont want to have another op. maybe i should. but lack of sleep kills me and gives me awful head pains. have an inhaler but i cant tell if that helps anymore or not. so i just take paracetamol and do lots of deep nasal breathing.

My mom's speech teacher says humming helps for bad sinuses. I wonder if she's just testing how far she can pull my mom's leg (or would that be nose?). I mean for chrissakes, HUMMING? Anyway yeah sinuses suck as much as migraines :-(

I had been suffering from an apparently migraine attack the last couple of days. I had a prescription for some hardcore meds. But I was in doubt: if it wasn't a migraine attack, it wouldn't help and they are some hardcore meds (the list of side effects seem endless). My friend said: why the fuck do you read the paper, just pop the pill. I finally did. I feel so happy, like walking on clouds. Fuck me, migraine-less me is feeling happy happy. Now I realize how fucking crap migraines are. It really drains you.

Anyone get Cluster Headaches?

Usually get them every other year but am getting "warning signs" that I'm going to get them a year early.

^ Getting them now. Fucking fuck.

Had mine from Christmas to the end of January, waking up every bloody night feeling like there's a knife in my eye. But it's over again for the moment. You never get used to them.

If only I could send this message to StanM 2009 : it's not trigeminal neuralgia you've got, even though some of the symptoms point that way, it's cluster headaches after all. Your beta blockers didn't actually help, you only thought so because it was just the end of that particular cluster. You'll get them every 2 years and they'll last for about a month, if the next five years are anything to go by. (oh, and try and lose some weight if you don't want to get a hernia in about 3 years)

How were you treating them? I used to only get mine in the night but they have moved to every 7 hours or so.

(Similarly, was prescribed antibiotics for years and always thought it just took six weeks worth ...)

I didn't take anything because of the uncertainty (if it helps, is it the pills or the end of the cluster?), the only thing that worked was to either sit upright in bed (it would slowly fade away in waves during the next hour or so) or walk around (but it's not obvious to go walking around a quiet part of town at 3 or 3 AM without looking like a burglar looking for a target).

Good luck! Try everything you can think of that isn't dangerous or illegal and don't give up!

2 or 3 AM

Try everything: drink a lot of water, drink less water, skip meat, eat more meat, more vegetables, less vegetables, nuts, no nuts, greasy food, no greasy food, bread, no bread, fish, no fish, milk, no milk, be outside more, higher or lower temp on the thermostat, etc etc etc, I'm convinced there's a pattern or trigger but I haven't found mine yet.

I usually treat cluster patients for prevention with verapamil (take every day to keep the cluster away), or a short course of the steroid dexamethasone (start only when the cluster starts, to interrupt the cycle).

Acute treatment is tricky because the episodes are usually brief and medications take awhile to get absorbed from the stomach. Subcutaneous or intranasal sumatriptan is the fastest-acting option. 100% O2 by mask is effective in research trials but impractical in real life.

Cluster is circadian and related to hypothalamic/autonomic function, not typically associated with environmental triggers like migraine. Smoking and hard liquor are risk factors (but not necessary to develop the disorder). Milk, fish and bread or whatever are probably not the issue. Interestingly, hazel eyes, ruddy skin and furrowed facial features ("leonine facies") have been described as associations.

/neurologist

Thanking you!

Nothing skin- or face-related here. My partial heterochromia (brown sector in otherwise blue eyes) IS on the same (right) side my migraine is on, though.

Yes, I use Sumatriptan 50 mg tablets plus oxygen or Sumatriptan injection. Problematically, I'm getting three or four attacks a day at the moment(which would take me over the allowed prescription of the injections). Didn't get on with Verapamil or steroids, at all.

If you're having that many attacks, you're in the middle of a cluster and steroids are indicated to interrupt the pattern. They usually work.

If you're having frequent clusters (ideally, you'd have 1-2 or fewer clusters -- bouts where you have 1 or more attacks per day on most days -- per year), you should be on an ongoing preventive like verapamil. Verapamil is usually effective even at modest doses, tends to be well tolerated.

If you get on the right regimen (sometimes easier said than done), you might be able to reduce the number of attacks to a handful per year, or even go a year or more between attacks.

I'm apprehensive about taking something that fiddles with my heart like verapamil for the rest of my life for something completely different just because it happens to inexplicably seem to work :-/

OK chief, that's your call.

I'm lucky to only have it for about a month every couple of years at the moment, I might change my mind if it was more often.

So what you need is a order for steroids that you can start as soon as the cluster does. Cut that month down to a couple of days. Stay off preventives (verapamil etc) if you can go years between clusters, they're only needed if the clusters are more frequent. When it finally recurs, knock it back again with the dex. Whack-a-mole style.

For people whose clusters are predictable by season (only get them in the fall or whatever), I put them on verapamil just during that window and then stop it until the same time next year.

Thank you so much! ^ why can't I buy this person a gold star?

Spoke to OUCH (Organisation for the Understanding of Cluster Headache)(UK)'s helpline today. They suggested not bothering with Sumatriptan tablets (too slow) but using the injections. They also suggested using Oxygen but continuing use for ten minutes after the pain stopped (likely to reduce rebounds). They mentioned the possibility of using Frovatriptan, which has a longer "shelf life" than Sumatriptan. They also mentioned Verapamil and steroids.

Frova's a decent idea for bridging during recurring attacks, because it stays in your system for 24 hrs or so. It's quite slow to start working, so it's next to useless for acute treatment of an attack that's just started. But it would likely prevent further attacks in that 24 hr window.

You're probably better off with a short course of steroids to interrupt the cluster: way cheaper than brand name triptans and very effective. Once the cluster "breaks", it often goes quiet for a nice long time.

Acute treatment in cluster should be considered as rescue therapy -- if needed more than rarely, it's a sign that other measures have failed.

Ta.

(Yes, once I get to the end of this, it'll be two years before they happen again).

First migraine in two years. My main trigger is blocked sinuses, so I attribute this one to a very dry September where it hardly rained at all suddenly shifting to being very rainy today.

i've been getting migraine symptoms without the headache. light sensitivity/blurry vision/aura. am i going blind?

curious about the post just above mine that mentions the change in the weather -- we just went from a long period of drought conditions to heavy rain.

Sounds like: http://en.m.wikipedia.org/wiki/Acephalgic_migraine

Barometric pressure changes can be a trigger for all sorts of migraine, including visual aura w/o headache.

That's interesting. I've noticed I often get migraines when we're in a high pressure cell, with dry air and bright skies, but my very worst migraines have been in suffocatingly hot and humid days of summer. By contrast, I seem to do fine with moderately cool, cloudy days, with or without light precipitation.

BTW I seem to recall reading somewhere that the Santa Ana winds (which are blasts of hot dry desert air funneled through the canyons and onto the southern California coastal plain) can also trigger migraines.

Many migraine sufferers in western Canada have similar problems with the chinooks.

Triggers are always personal, but barometric pressure changes are a commone one.

Ah yes, the Chinooks. The same must apply to the mistral winds in the Mediterranean I imagine

also the papyrus winds of the western arabian peninsula and the wing dings of australia.

sorry

http://en.m.wikipedia.org/wiki/Foehn_wind
http://en.m.wikipedia.org/wiki/Katabatic_wind

Yes, all those silly silly names for silly silly winds, how foolish of people to suffer from something you've never heard of.

this piece from a cluster headache sufferer is really descriptive

The headache was an unwanted guest. And my unwanted guest was a serial killer with an ice pick. When the right side of my face started to tingle, I would announce, “He’s coming.” This headache became personified. This pain took a pronoun. I planned my days around him, like how I planned my travels around snow when I lived in upstate New York. In my daily planner, I blocked out the hours between one and six. I would be occupied during those times, writing in my planner: “Down time.”

http://blog.longreads.com/2015/01/13/a-meditation-on-pain/

Cluster Headaches are such weird things. A year to the week of my last attack, I've got a "shadow" - pain in the same place as a cluster headache and with some of the same symptoms but with a lot less actual pain (say 3/10 instead of 10/10). I generally get actual cluster headaches proper every 18-24 months.

Was expecting cluster headaches in March/April but (thankfully) haven't experienced them. Ridiculously, I don't have a clear idea of when I get them (I've had them in spring and autumn) but its more or less every two years (I can actually track the last few years by checking my whinging on email).

Anyway, I've been experiencing the slightly freaky insomnia that seems to somehow precede an attack ... and it has been making me wonder if anything has changed advice-wise in the last two years?

I still use the same approach. Had 2 cluster patients in headache clinic this morning: one already on verapamil, the other I started it at a low dose. Gave them both scripts for dexamethasone and sumatriptan nasal spray.

I ordered them both CT angiograms but realized in doing so that I've got nearly 6 years experience in practice now, and have never once found an underlying structural or vascular lesion to explain cluster.

Most of my cluster patients do well, eventually stop coming to follow up appointments. I tend to run late in clinic (talk too much), keep people waiting for 20 minutes or more. If there's nothing to do but renew the prescriptions and banter about the weather, I can understand why they don't feel they need to bother.

Thanks Plasmon.

Is the nasal spray recommended over the injections?

Either/or. Nasal spray may be a little easier, plus you can aim at the affected side. Most people say it tastes gross though. But then some people don't like using injectors.

I got some zinc/magnesium/calcium supplements which I keep forgetting to take, but it occurs to me that the past 3 (?) times I actually remembered to take them I had a migraine that evening. Coincidence?

(Probably, as I haven't worked out my triggers. Certainly the last time it happened i.e. yesterday there were several other candidates, mainly stress and a weather change/getting too hot and dehydrated.)

Also tbh I'm not entirely sure these are migraines but I've been getting more and more of whatever they are lately.

I used to get infrequent and rather mild/shortlived* migraines which were unmistakeable as they came with aura, but these ones do not, so I'm not 100% sure they feel the same. However, they are approximately one-sided, come with nausea and often photophobia and/or neck pain, so I think signs point to yes.

Interestingly they also feel a lot like a more intense version of the nauseous headaches I get at certain times of the month (i.e. hormonal), which I hadn't been classing as migraines because it feels kind of insulting to use the word for something not completely debilitating, but perhaps they're all on a spectrum. Or perhaps they are 3 different things altogether. But anyway.

* at least in comparison to all the other accounts I've heard, still horrible though. it occurs to me that the thread title is "hardcore migraine sufferers unite" and I have outed myself as a very softcore migraine sufferer

I'm fairly certain that this thread can tolerate very softcore migraine sufferers ...

So, have there been any new wonder-treatments for Cluster Headaches?

Actually, getting proper ones now ... I did just think I'd had my worst ever single attack but I think that's probably just a reflection of how much I go into denial between episodes.

Anyone know anything about nerve blocks for cluster headaches? (Basically, are they effective/worth having?)

I finally found good meds. Excedrine. Pop two pills and usually they subside.

Psilocybin and LSD appear to have promise with migraines/cluster headaches.

https://www.ncbi.nlm.nih.gov/pubmed/16801660

http://www.thedailybeast.com/articles/2014/02/05/longtime-sufferers-of-cluster-headaches-find-relief-in-psychedelics.html

Thanks all. Oxygen does help (though I sometimes wonder if it just delays the pain). Sumatriptan works - it works well/speedily as an injection but less so as a tablet (though I still think it has some value). I don't like to take it for long periods of time, though.

Shitting hell. Five cluster attacks so far today (two possibly rebounds from using Oxygen).

Have been pondering last week's "Doctor in the House" about Cluster Headaches. The premise: a GP spends longer than the ten minutes they would allocate in a typical surgery to consider an illness. The GP appeared to insinuate that the headaches were a "life-style" issue and that the treatment should involve a reduction in stress and a change in diet. No mention was made of the specific symptoms or the recommended treatments (Oxygen, Sumatriptan injections) - and there's definitely an argument that what was being shown wasn't strictly a Cluster Headache.

I've experienced Cluster Headaches for 26 or so years, covering a variety of stress levels (from not at all stressed to mildly stressed) and from "skinny" to n"ot-so-skinny" aw well as a variety of diets (all, for the most part, healthy. Found myself highly irritated by the suggestion that the pain is a result of my "life-style" ...

i've been getting what i've called "tension headaches" more regularly in the last few years. they feel like a hangover without the nausea

- pounding headache, often on one side
- neck pain/tension
- nasal congestion

usually lasts til evening. on some rare occasions it lasts thru the night and into the next day. they are awful but i have no idea what they are or how to deal w them :/

physiotherapy might help

Cluster headaches aren't typically tied to stress. They happen more often in people who smoke and drink (and supposedly, have "leonine facies"). I encourage my cluster patients to quit smoking and drink only in moderation if at all, but that's about the only lifestyle advice I give them. I'm not aware of any association with diet.

Tracer, your headaches sound like migraines -- unilateral and throbbing. Migraine often produces pain in the neck / back of the head (occipitonuchal pain) and autonomic symptoms in the face like sinus congestion. Migraine headaches aren't necessarily severe, and the associated migrainous symptoms (sensitivity to light, sound etc, and nausea or dizziness) can be mild and sometimes manifest mostly as fatigue and a need to rest. As long as they resolve completely, it should be safe to treat them symptomatically. You could see a doctor and try a triptan for acute treatment, or if you want to manage them on your own you could take a large dose of ibuprofen (800 mg) plus some hydration +/- caffeine and if possible sleep.

thank plasmon!

https://splinternews.com/why-working-women-with-migraines-suffer-in-silence-1820243253

The cluster headaches are about, two years to the week since my last lot.

At the point of finishing my last cluster, I was prescribed Sumatriptan and Oxygen and had the offer of a Nerve Block "next time".

I don't get on with Verapimil.

Any new developments in the last two years?

Not sure why I wrote "about" - I meant "back".

i have been getting what i term my "Saturday headaches". i attribute them to stress at work. they are truly terrible - i am floored until around 5pm no matter how many ibuprofen i take, coffee, water etc.

my working theory is that extreme shifts between stress and non-stress exacerbates them. for instance, the last one happened when i worked like crazy on a Friday and went straight to the pub afterwards, then zoomed home to put kids to bed. i only had a pint and a half. so it wasn't a hangover. but i think there's something about the whiplash of those two modes that is stripping my gears.

sounds like you are onto something -- how does your nervous system feel? are you sleeping? are you jumpy? i haven't had a migraine in a long time but have grown increasingly (painfully) aware of the relationship between stress and somatic/physical symptoms :(

i never, ever get enough sleep but it's not insomnia it's just staying up too late :/

IANAD but if you make an effort to get enough sleep, it could really make a difference and maybe even solve your prob!

yep :/

Change in pattern does give me migraine attacks. So days off: lots of migraine. Go on a day trip? Migraine. It's not food but stress that gives me migraines. :-(

Hmm. Had a nerve block in the hope of seeing off Cluster Headaches for the next 8 weeks or so (the rest of the episode) ... and it worked ... for 36 hours.

:-(((((

today's my day for complaining on ilx. migraines suck. i've had this one about 24 hours, which means i've got at least 12 to go.

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?