Hardcore Migraine Sufferers Unite

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Anyone suffer from these?

Going to see a specialist next week, I've had long running health problems the last two years, sometimes been told it's sinuses, now they're suggesting migraines and acid reflux.

How do the "triggers" work for people? One factor making my doc think I have migraines is that I know for a fact that if I eat chocolate, I get a really bad headache. However it's not directly when I eat the chocolate. Sometimes it's 5 or 6 hours later, other times it happens in the days afterwards. But I know from eliminating something like chocolate completely from diet and re-introducing it that it definitely sets me off.

Other triggers are a bit more vague, I have fairly weird digestion issues at the moment too and sometimes it seems like if I eat late at night, have a bad sleep cos of indigestion, and constantly get that acidy aftertaste, that that I feel a little raw and maybe am a bit more prone to migraine.

Ronan, Wednesday, 25 April 2007 21:39 (ten years ago) Permalink

My pop has these ,but they've been manageable since he started on some pill... possibly testing it. imitrex iirc.

if you are photosensitive, then it makes no sense to be sinuses. do you get all light-hating? also, iirc, sinus pain is often asymmetrical.

Will M., Wednesday, 25 April 2007 21:41 (ten years ago) Permalink

my friend's moms got botox in her temples to help ease migraine pain. apparently it worked.

backstory: she got this done right before new year's, and couldn't drink. so she asked if i had any rolling papers so she could be "as stoned as everyone else at the party" the next evening. awesome mom.

the table is the table, Wednesday, 25 April 2007 21:44 (ten years ago) Permalink

i get them, too, but only once or twice a year. they last two days, then go away.

the table is the table, Wednesday, 25 April 2007 21:45 (ten years ago) Permalink

Hey dudes. I just had a migraine this past weekend, after drinking a tiny amount of sake, and being around a lot of smoke at someone's house. After the obligatory "wanting to die" head-pain period, I was listless for the entire evening (yeah, I was out cold for the entire day).

I'm thinking mine is due to "non-allergic rhinitis." I have the regular ol'rhinitis (allergies), but certain triggers (2nd hand smoke, alcohol) can send me off into an allergic reaction fit, which usually leads to a vomfest and migraine.

I'm such a bummer!

molly mummenschanz, Wednesday, 25 April 2007 21:50 (ten years ago) Permalink

non allergic rhinitis-the postmodern illness

I don't have any allergies, I'm kinda hoping my sinuses might be fine and that my second doctor was right, not my first, as I'm thinking migraine/reflux might me marginally easier to treat than random sinus behaviour.

just wondering about the way migraines work as such.

I'm not photo sensitive when I get these headaches, not strictly. I find I have a very vague dislike of the light and find focussing on stuff a bit more difficult, but not utterly driven mad by the light.

Ronan, Wednesday, 25 April 2007 21:57 (ten years ago) Permalink

if you are photosensitive, then it makes no sense to be sinuses. do you get all light-hating? also, iirc, sinus pain is often asymmetrical.

Actually, my ears, nose and throat doc told me sinuses can trigger migraines. iirc, he said the sinuses can create a vacuum in the sinus passageways, which can trigger a migraine. I was really confused with what was going on with me (pre-rhinoplasty, woohoo!), as my sinuses were totally congested, my face was swollen a la sinus problems, and I was having migraine symptoms (light sensitivity, etc.), which turned out to be the worst headaches I'd ever had (worse than the migraines I had when I was in high school).

molly mummenschanz, Wednesday, 25 April 2007 21:58 (ten years ago) Permalink

Ronan, are your headaches the worst headaches you've ever had? Have you ever yelled out, in tearful despair, "I want to die!"?

2 migraines ago, I was crying because my head felt like two tectonic plates rubbing up against each other. I then had to stop crying, even though I felt AWFUL, because crying made my head feel worse.

molly mummenschanz, Wednesday, 25 April 2007 22:08 (ten years ago) Permalink

They are definitely the worst headaches I've ever had. I don't cry, as I am a sort of action hero type figure, usually I think things like "nobody should ever feel this awful" repeatedly, over and over, coupled with scary thoughts that I might have a brain tumor or something, though the fact I've been sick for 2 years and not dropped dead yet and been to see my doc plenty of times allays those fears.

Ronan, Wednesday, 25 April 2007 22:10 (ten years ago) Permalink

Oh, bummer, Ronan! That's exactly how I felt before I was diagnosed with migraines. I was 12, and out eating dinner with my family. I just kept thinking, "wow, I feel really terrible." I think I was sort of in awe with how terrible I actually felt. And then I had to run to the restroom to throw up.

This thread is making me schedule a doctor's appt., to get some Imitrex.

molly mummenschanz, Wednesday, 25 April 2007 22:14 (ten years ago) Permalink

I see a neurologist next week about migraines, almost hoping I have them, as it seems from reading your accounts that I might have gotten off lightly, I don't vomit and though the headaches are sometimes maddeningly sore I can just about work through them. So maybe the right medication could help a lot.

I have a dream that somehow fixing migraines would make all my other symptoms, weakness/weird breathing etc go away too, since they all came along together. A FOOL'S DREAM.

Ronan, Wednesday, 25 April 2007 22:19 (ten years ago) Permalink

i only get them when i get very little sleep several nights in a row followed by some 15-hr crash followed by less sleep again...somewhere in there i start to develop a headache that is so utterly powerful that i can't eat, or think, or move, or do anything. the only thing that works on it is ibuprofen, no luck w/ acetaminophen or aspirin

deej, Wednesday, 25 April 2007 22:22 (ten years ago) Permalink

deej, sometimes caffeine works for me. My uncle swears by drinking a can of coke at the start of a migraine.

Ronan, I had to get a test that looked like this when I was being diagnosed with migraines:

http://kc.vanderbilt.edu/kennedy/research/images/eegnet.jpg

I think they wanted to make sure I didn't have a tumor or some shit.

molly mummenschanz, Wednesday, 25 April 2007 22:32 (ten years ago) Permalink

I've had them since I was six or seven years old - usually once or twice a week. They got much worse after puberty. I have light sensitivity, develop supersensitive hearing during attacks, a need to blast the AC and suicide-inducing head pain. That's the main reason I'd never own a gun - the temptation during attacjs would be great, believe me.

But the good news is that I've nearly totally eliminated them after MANY YEARS of working out the triggers. For me, there are multiple triggers and while none of them do much alone, when a critical mass appears, WHAMMO. Everyone I've talked to who's beat migraines more or less says the same thing. Avoid too many of the following at once:

1) Lack of sleep, extreme fatigue.
2) Emotional stress; this includes not enough time to ponder things freely. I bottle things up.
3) Weather changes - when a high humidity storm front moves in, it's much easier for me to get a migraine. It's the humidity that does it, too.
4) Too much time in unnatural light (like flourescent lighting with no windows.)
5) Trigger foods - for many people, these include chocolate, cheeses (especially orange ones like cheddar), nitrites (in many packaged / dried meats and wines.)
6) Skipping caffeine - if you're addicted, don't go too long without a fix!
7) Food allergies - I'm allergic to cinnamon and melons, eating them adds to the likelihood of a migraine.
8) Alcohol - Sadly, it's a big factor.

What helps, aside from avoiding the above?

1) Imitrex - sometimes, but not often. More so when I take it at the *very start* of an attack.
2) Vomiting - I don't vomit easily, but when I've managed to stick my finger down my throat 'successfully,
it has helped.
3) Sleep. Which isn't always easy when one is writhing in agony.
4) Caffeine, at the start and when I haven't had any for a while.

The best thing about migraines, for me, is that when I've had a particularly horrid one and wake up the next day with it gone, I have a 4- to 12-hour "high" where I feel much much better and happier than should be normal! I don't know if this is from residual endomorphins my body's pumped into my brain or what, but it's a great feeling. If it were a drug, I'd be scared to take it!

deedeedeextrovert, Thursday, 26 April 2007 00:15 (ten years ago) Permalink

About 30 mins after reading this thread last night, I got a migraine! But it was a mini-one - the visual effects were minimal (a small sparkling crescent that only took up like 5% of my view) and I managed to get to sleep before the headache kicked in. I did wake up a couple of hours later and it was there, but it felt little more than a regular headache and I managed to get back to sleep straight away. How odd (but good I guess, in that I might not be completely knocked out every time I get one).

Mark C, Thursday, 26 April 2007 11:03 (ten years ago) Permalink

I might have a brain tumor or something

Oh man, have I been there. Although I am pregnant and supposedly this drives migraines away, I still suffer from (regular) headaches. What I have noticed is that caffeine does affect my migraines. When I stopped breastfeeding, I started drinking coffee like it was running out of fashion. I would drink, well, not liters, but close to it. I am not a coffee drinker but I wanted to catch up because I hadn't had any caffeine for a couple of years. I stocked it all up and out came a few killer migraine attacks. They were so bad I started to cry because I was at the end of my ropes (?). I just wanted to crawl in a hole and never see the world again. My husband of course freaked out not knowing what to do.
What apparently can also cause migraines, but this is only for women, is certain types of anti-conception pills. Bummer, no? I took the wrong ones apparently. But since we decided to go for another kid, I stopped. The ULTRA MEGA LARGE migraine attacks more or less lessened in frequency, but I still have migraines.

Cheese, caffeine,... Anything can cause a migraine but it's (sometimes) extremely hard to track what causes it. Some suggest writing down in a diary what you've eaten, drunk and your emotional state. It's eaiser to notice a pattern this way. Have I tried this? No.

stevienixed, Thursday, 26 April 2007 17:27 (ten years ago) Permalink

Weather changes -> In Hawaii I got migraine attacks but only in specific places! Reason? The wind. Man, did I feel shitty at times. Which was really sad cause I did have such a great time there.

stevienixed, Thursday, 26 April 2007 17:28 (ten years ago) Permalink

Oh yeah, uh, it sometimes runs in the family: my grandfather, my mom and I have it. Hopefully Ophelia doesn't.

stevienixed, Thursday, 26 April 2007 17:29 (ten years ago) Permalink

three months pass...

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.

get bent, Thursday, 26 July 2007 05:35 (ten years ago) Permalink

ten months pass...

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?

libcrypt, Wednesday, 4 June 2008 05:46 (nine years ago) Permalink

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!

Maria, Wednesday, 4 June 2008 08:21 (nine years ago) Permalink

(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.

get bent, Wednesday, 4 June 2008 10:57 (nine years ago) Permalink

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

stevienixed, Wednesday, 4 June 2008 11:06 (nine years ago) Permalink

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

stevienixed, Wednesday, 4 June 2008 11:07 (nine years ago) Permalink

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.

libcrypt, Wednesday, 4 June 2008 15:05 (nine years ago) Permalink

four weeks pass...

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 00:41 (nine years ago) Permalink

eight months pass...

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

Nathalie (stevienixed), Thursday, 5 March 2009 18:36 (eight years ago) Permalink

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

Nathalie (stevienixed), Thursday, 5 March 2009 18:36 (eight years ago) Permalink

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

not_goodwin, Thursday, 5 March 2009 18:38 (eight years ago) Permalink

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.)

eboue died for somebody's sins but not mines (a hoy hoy), Thursday, 5 March 2009 18:39 (eight years ago) Permalink

ayo bad day for me today

s1ocki, Thursday, 5 March 2009 18:40 (eight years ago) Permalink

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.

the pelvis of a mammoth (get bent), Thursday, 5 March 2009 18:42 (eight years ago) Permalink

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)

Nathalie (stevienixed), Thursday, 5 March 2009 19:57 (eight years ago) Permalink

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.

StanM, Thursday, 5 March 2009 21:12 (eight years ago) Permalink

(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)

StanM, Thursday, 5 March 2009 21:15 (eight years ago) Permalink

three months pass...

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.

Violent In Design (Masonic Boom), Monday, 15 June 2009 19:38 (eight years ago) Permalink

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

s1ocki, Monday, 15 June 2009 19:51 (eight years ago) Permalink

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.

snoball, Monday, 15 June 2009 20:04 (eight years ago) Permalink

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.

Violent In Design (Masonic Boom), Monday, 15 June 2009 20:06 (eight years ago) Permalink

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.

snoball, Monday, 15 June 2009 20:14 (eight years ago) Permalink

Mine look like this - but FLASHING and glowing

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

Violent In Design (Masonic Boom), Monday, 15 June 2009 20:20 (eight years ago) Permalink

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).

Sookeh, I vant to suck your titties (stevienixed), Thursday, 25 June 2009 13:40 (eight years ago) Permalink

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.

Sookeh, I vant to suck your titties (stevienixed), Thursday, 25 June 2009 13:41 (eight years ago) Permalink

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.

butch vigoda (get bent), Saturday, 27 June 2009 11:00 (eight years ago) Permalink

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?

Sookeh, I vant to suck your titties (stevienixed), Saturday, 27 June 2009 12:07 (eight years ago) Permalink

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.

figgy pudding (La Lechera), Tuesday, 30 June 2009 13:32 (eight years ago) Permalink

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

baleen, the krill queen (Abbott), Tuesday, 30 June 2009 16:07 (eight years ago) Permalink

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.

Sookeh, I vant to suck your titties (stevienixed), Wednesday, 1 July 2009 13:22 (eight years ago) Permalink

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

Sookeh, I vant to suck your titties (stevienixed), Wednesday, 1 July 2009 13:24 (eight years ago) Permalink

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.

figgy pudding (La Lechera), Wednesday, 1 July 2009 13:31 (eight years ago) Permalink

^ Getting them now. Fucking fuck.

djh, Friday, 7 March 2014 18:46 (three years ago) Permalink

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)

StanM, Friday, 7 March 2014 19:00 (three years ago) Permalink

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 ...)

djh, Friday, 7 March 2014 21:15 (three years ago) Permalink

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!

StanM, Friday, 7 March 2014 21:34 (three years ago) Permalink

2 or 3 AM

StanM, Friday, 7 March 2014 21:35 (three years ago) Permalink

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.

StanM, Friday, 7 March 2014 21:39 (three years ago) Permalink

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

Plasmon, Friday, 7 March 2014 23:42 (three years ago) Permalink

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.

StanM, Saturday, 8 March 2014 02:17 (three years ago) Permalink

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.

djh, Saturday, 8 March 2014 03:57 (three years ago) Permalink

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.

Plasmon, Saturday, 8 March 2014 05:34 (three years ago) Permalink

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 :-/

StanM, Saturday, 8 March 2014 05:51 (three years ago) Permalink

OK chief, that's your call.

Plasmon, Saturday, 8 March 2014 07:43 (three years ago) Permalink

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.

StanM, Saturday, 8 March 2014 07:48 (three years ago) Permalink

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.

Plasmon, Saturday, 8 March 2014 07:51 (three years ago) Permalink

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

StanM, Saturday, 8 March 2014 08:04 (three years ago) Permalink

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.

djh, Saturday, 8 March 2014 21:27 (three years ago) Permalink

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.

Plasmon, Sunday, 9 March 2014 01:47 (three years ago) Permalink

Ta.

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

djh, Sunday, 9 March 2014 20:58 (three years ago) Permalink

six months pass...

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.

wackness unlimited (snoball), Wednesday, 1 October 2014 20:08 (three years ago) Permalink

two months pass...

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

Highland-Camrose Bungalow Village (get bent), Thursday, 4 December 2014 07:03 (two years ago) Permalink

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.

Highland-Camrose Bungalow Village (get bent), Thursday, 4 December 2014 07:05 (two years ago) Permalink

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.

Plasmon, Friday, 5 December 2014 03:15 (two years ago) Permalink

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.

never have i been a blue calm sea (collardio gelatinous), Friday, 5 December 2014 03:36 (two years ago) Permalink

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

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

Plasmon, Friday, 5 December 2014 03:40 (two years ago) Permalink

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

never have i been a blue calm sea (collardio gelatinous), Friday, 5 December 2014 03:56 (two years ago) Permalink

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

sorry

languagelessness (mattresslessness), Friday, 5 December 2014 05:14 (two years ago) Permalink

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.

Plasmon, Friday, 5 December 2014 06:45 (two years ago) Permalink

one month passes...

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/

groundless round (La Lechera), Tuesday, 13 January 2015 21:09 (two years ago) Permalink

two months pass...

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.

djh, Tuesday, 31 March 2015 22:14 (two years ago) Permalink

one year passes...

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?

djh, Wednesday, 1 June 2016 23:14 (one year ago) Permalink

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.

Plasmon, Friday, 3 June 2016 04:52 (one year ago) Permalink

Thanks Plasmon.

Is the nasal spray recommended over the injections?

djh, Saturday, 4 June 2016 21:27 (one year ago) Permalink

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.

Plasmon, Monday, 6 June 2016 19:17 (one year ago) Permalink

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.)

a passing spacecadet, Monday, 6 June 2016 21:42 (one year ago) Permalink

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

a passing spacecadet, Monday, 6 June 2016 21:49 (one year ago) Permalink

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

djh, Monday, 13 June 2016 19:35 (one year ago) Permalink

six months pass...

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

djh, Saturday, 7 January 2017 00:42 (ten months ago) Permalink

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.

djh, Saturday, 7 January 2017 00:44 (ten months ago) Permalink

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

djh, Monday, 9 January 2017 22:37 (ten months ago) Permalink

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

nathom, Wednesday, 11 January 2017 16:55 (ten months ago) Permalink

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

Kiarostami bag (milo z), Wednesday, 11 January 2017 17:00 (ten months ago) Permalink

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.

djh, Wednesday, 11 January 2017 21:32 (ten months ago) Permalink

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

djh, Tuesday, 17 January 2017 21:16 (ten months ago) Permalink

four months pass...

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" ...

djh, Monday, 22 May 2017 22:02 (six months ago) Permalink

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 :/

illegal economic migration (Tracer Hand), Tuesday, 23 May 2017 08:26 (five months ago) Permalink

physiotherapy might help

heaven parker (anagram), Tuesday, 23 May 2017 08:27 (five months ago) Permalink

two months pass...

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.

Plasmon, Sunday, 30 July 2017 00:19 (three months ago) Permalink

thank plasmon!

illegal economic migration (Tracer Hand), Sunday, 30 July 2017 09:51 (three months ago) Permalink

three months pass...

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