Clusters

[Craig630]

More of a rant, but I had to share with someone and we all know, the anonymousness of the internet os a great place to vent.

Previously, I had been diagnosed with cluster migraines. I needed a prescription refilled so I set up a DR appt. As my Dr. wasn't available, I saw a new guy.

Being that we had never met, he treated me as a new case, diiagnostics and all that...

Based on the fact that I described the pain as piercing (I actually said “Like being stabbed in the f***ing eye/head/neck with a white hot knife”), rather than pounding he said it’s likely I have Cluster Headaches, not migraines.

So I’ve been looking stuff up this morning (causes, cures, etc…) and came across this..

http://en.wikipedia.org/wiki/Cluster_headaches

“…experts have suggested that it may be the most painful condition known to medical science…”

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

“Indeed, cluster headaches are also known by the nickname "suicide headaches".”

I’m not usually one to use this phrase, but… FML.


Further down… I found some awesomeness though...

“There is anecdotal evidence that serotonergic psychedelics such as psilocybin (mushrooms) and LSD and LSA (d-Lysergic acid amide, contained by Rivea corymbosa seeds) abort cluster periods and extend remission periods.”

Anyone else suffer from this? They say less than 1 of 1,000 people are hit by these.

[Relic]

Fortunately, no. But I do suffer from migraines, sometimes pretty bad ones that nothing short of simply waiting it out in nauseating pain will help. Hang in there

[MatticusMania]

Whats that quote that went along with my old avatar “I hate to advocate drugs, alcohol, violence, or insanity to anyone, but they've always worked for me.” HST

[L-A]

I know someone who suffers from cluster headaches. They seem like an atrocious experience.

His trick for avoiding extended episodes was to wake up with strong light in the morning, especially in winter. In the summer, he didn't really experience anything, so he linked his symptoms to the daylight cycles. It seems that every case is different though.

Do you know what seems to trigger your headaches? My friend seems to seldom get them at another time than 2 o'clock.

[Craig630]

Nah, no discernable triggers.

I cleansed (nothing but orange slices & water) for a month once and still got 'em. So, unless it's oranges or water...

Yeah, they believe thet Hypothalmus is the cause. For those that don't know, it's the glad that regulates sleep cycles and such based off of daylight and such. I'm lucky that I don't get them during the day so they don't affect me at work or anything, but no matter what time I go to bed, I get one about 2 hours after I fall asleep.

I haven't had a cluster in about three years, I was convinced they were being caused by my ex-wife (we split three years ago, haha) but alas... they are not.

Been doing some more research, other than the 'shrooms, the only other cure I can find is gettin' busy. I needs to find me a woman friend!

[Relic]

Originally Posted by Craig630

Nah, no discernable triggers.

I cleansed (nothing but orange slices & water) for a month once and still got 'em. So, unless it's oranges or water...

Yeah, they believe thet Hypothalmus is the cause. For those that don't know, it's the glad that regulates sleep cycles and such based off of daylight and such. I'm lucky that I don't get them during the day so they don't affect me at work or anything, but no matter what time I go to bed, I get one about 2 hours after I fall asleep.

I haven't had a cluster in about three years, I was convinced they were being caused by my ex-wife (we split three years ago, haha) but alas... they are not.

Been doing some more research, other than the 'shrooms, the only other cure I can find is gettin' busy. I needs to find me a woman friend!

I have 3 triggers for my migraines.
The biggest is lack of sleep, or a disturbed sleep. If I'm woken up several times during the night, or woken up too early in the AM, fall asleep and am woken up again, I will almost always suffer a migraine later that next day. It has to be a pattern though of being woken several times. Weird huh?

Another trigger is alcohol. If I drink anymore than 3 or 4 beers in an evening, I will be sure to have a migraine the next morning. NOT a hangover, but a migraine complete with visual distortions, nausea, and all the other weird crap that goes with it.
Last is tobacco. I rarely if ever smoke, so this one's almost a non-issue but any more than maybe 2 or 3 cigs in an evening, and I will get a migraine the next day.

[DRafalske]

Originally Posted by Relic

I have 3 triggers for my migraines.
The biggest is lack of sleep, or a disturbed sleep. If I'm woken up several times during the night, or woken up too early in the AM, fall asleep and am woken up again, I will almost always suffer a migraine later that next day. It has to be a pattern though of being woken several times. Weird huh?

Another trigger is alcohol. If I drink anymore than 3 or 4 beers in an evening, I will be sure to have a migraine the next morning. NOT a hangover, but a migraine complete with visual distortions, nausea, and all the other weird crap that goes with it.
Last is tobacco. I rarely if ever smoke, so this one's almost a non-issue but any more than maybe 2 or 3 cigs in an evening, and I will get a migraine the next day.

Interesting. The triggers for my migraines are almost identical to yours. Lack of or interrupted sleep, small amount of alcohol, and tobacco (except for me its if I smoke too much or a different brand than my usual). Have you found any effective treatments? Nothing has worked well for me. Tylenol and some good sleep works, but that seems to be the only legal treatment that has any effect. Marijuana does seem to be an excellent remedy though, and works every time, when it's an option (like if I'm not at work and am not driving anywhere).
D

[Craig630]

Just to clarify - Migranes are way different than Cluster Headaches. Way different.

I knew that my headaches were bad, but the first quote block in my OP caught me by surprise:

“…experts have suggested that it may be the most painful condition known to medical science…”

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

“Indeed, cluster headaches are also known by the nickname "suicide headaches".”

I did some more reading (WebMD, etc...) and they all seem to concur that this is without a doubt the most pain a human can feel, bar none.

Migrane :: Cluster as Pin-prick :: Gunshot Wound

But really, if everything I've read is correct and this is the max pain a person can feel, I now feel like I can handle literally anything that is thrown in my path.

Leonade anyone?

Edit: Clarification on my "no triggers" post
If I'm not in a cluster, there is no discernable trigger. If I'm in a cluster nitrates (red wine, beer, hot dogs, and [this is likely why they're called suicide headaches] bacon, etc...)

When one hits, there's nothing you can do for the pain. I got fioricet (barbituates)last night (325mg) and though it tossed me for a loop, the headache was still there, it's pretty f'ing intense.

[L-A]

Originally Posted by Craig630

But really, if everything I've read is correct and this is the max pain a person can feel, I now feel like I can handle literally anything that is thrown in my path.

Leonade anyone?

Well, of course this is limited to pain. As far as losing both legs or being tied to a pole in sizzling heat, you're pretty equal in consequences to us mere mortals

[fingertap]

Once, I investigated what:

nicotinic acid
migraine
Jacksonian march
vaso-dilation and/or vasoconstriction
LSD
and serotonin

had in common.

YMMV

~

[Craig630]

What did your investigation find, if anything?

[BigDaddyRob]

I've had both migraines and cluster headaches.

Migraines were a nut-crusher, but nothing compared to the cluster headaches. With migraines, mine started out with visual disturbances like both eyes not focusing together, to jagged prismatic auras around lights and bright objects (those were actually kinda cool), and culminated with getting hit in the back of the head with a baseball bat. I finally figured out that aspartame (Equal) was the trigger. Cut that out of my diet, and the migraines magically vanished.

The cluster headaches come on much more quickly, from first symptoms to being full-blown in five minutes or so. Mine seem to last around a half-hour to an hour, and then they're gone. So far I have not been able to figure out what is triggering them, other than beer and wine (sigh). I have tried indomethicin, which didn't really agree with me. And lithium, which sucked even more. Currently, I have a solution of 4% lidocaine, and shoot 1ml of it into my right nostril and sinus whenever an attack starts. It seems to work as well or better than anything else I've tried. Also, breathing straight oxygen seems to help, but I don't want to lug all that crap around with me. I also carry around the blue pills (sumatriptan), but it takes too long for them to take effect. The total body numbing effect is sorta neat though.

Thank God mine are in remission right now for whatever reason. Maybe because I'm letting my hair grow out. They were chronic, lasting over a period of two years.

Good luck. These things suck big-time.

[fingertap]

Originally Posted by Craig630

What did your investigation find, if anything?

I found what I needed to do in order to prevent my migraines.

You may wish to add the following search term to the ones I suggested above:

aura



~

[MIJ-VI]

And here I thought postherpetic neuralgia was bad!

I hope you guys who suffer from these cluster headaches find some relief--and soon!

[L-A]

Originally Posted by BigDaddyRob

I finally figured out that aspartame (Equal) was the trigger. Cut that out of my diet, and the migraines magically vanished.

I feel ya. There's something evil in Aspartame. I (accidentally) ingest some about once a year, and I lose a day of concentration every time.

[Joe Gress]

The only two things I know about cluster headaches is that they really suck (I actually used to know a friend with it. Stabbing white hot knifes sounds about right from her description), and the connection with LSD as a mystical cure. I guess there is only one way to find out...

[codeinedreams]

I've suffered from migraines for 20 years, and lately for the last year they tended to last for 3 days. usually what happens is I get fed up with it by the 3rd day after alternating among different meds so I start drinking beer and then it finally goes away. although usually it's the unilateral throbbing and nausea, etc, it seems like I get many of the symptoms of clusters like the facial pain. there's a lot of overlap of symptoms, so I believe the headache types lie on a continuum that bleed into one another. my triggers are lack of sleep, not eating when I should, and hangovers. a doctor once gave me a Rx for ergotamine (from the fungus ergot, known as the fungus with psychedelic qualities that infested the grain back in the salem witch days) but I never filled it for some reason, so I haven't tried it. I would not want to do LSD or psilocybin for this because for me the purpose of a medication is to help me to function normally so I can go about my daily business. those drugs would do the opposite for sure! I'm glad that people are acknowledging and appreciating how debilitating these things are, but to me it's like normal life so I'm used to it. what else are you guys taking for yours?

[Tegzsa]

I had a cluster about 2 years ago. Didn't know what it was and started thinking it may be a tumour or something.

Last year nothing. Then this year they were back with a vengeance. Always at about the same time, 8.30pm (around 15 hours after waking). Always the same: extreme pain behind right eye, a stabbing knife-like pain through top of head and deep into brain (felt ice-cold rather than hot, though), and neck pain on the right side. Worse if I had had a beer. Lasted 15-30 minutes. Absolutely agonizing. Cluster lasted for about 2 months.

Not had one for about 2 weeks, hoping it's finished.

[Rune Bivrin]

I've had them since I was around 12. Usually 5-10 incidents two days apart in every cluster. Fortunately the clusters are far apart. I've had periods where 3 years were without clusters.

Painful? Only if you think taking your right eye out and putting it in a vice would be painful. Do that for 2-3 hours, occasionally varying the pressure.

I thought nothing helped, but caved in to my wife and went to a doctor. Turns out that even though the symptoms are very different from "regular" migraine, it's still a kind of migraine. And the same medicine works.

In my case the pills are pretty worthless, but I get auto-injectors with Imigrain. Once I'm certain it's a full-blown attack I stab myself in the thigh with one, and the pain disappears magically in 1-3 minutes.

I only ever have these clusters when it's warm. If it's summer I'm pretty likely to enter a cluster, and then an attack can follow a day in the sun. A sauna is really not a good idea...

Each cluster follows a wave pattern with mild attacks getting progressively worse. Then a plateau with about 5 attacks. Finally it recedes into nothingness quite rapidly.

[Horny Toad]

Geez, just reading this friggin' thread is making my head hurt. What you're describing sounds just awful.