Hardcore Migraine Sufferers Unite

^ 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