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        New Message Board Archives >> 2006 General Board Posts >> Best way to explain a Cluster Headache to Someone?
        
(Message started by: JohnMcCloy on Aug 25^th, 2006, 9:28pm)

Title: Best way to explain a Cluster Headache to Someone?
Post by JohnMcCloy on Aug 25^th, 2006, 9:28pm

In the past i have been around friends and had an attack and they look at you like your mental.You try to explain what a Cluster Headache is but it is a term most have never heard.
Instantly the first thing someone will say is ohh.."Is it Like a Migraine?"
And they think you are overreacting to the pain so you try to explain to them but it does not work.The best thing to do is usually show them an article describing it.However i Feel that describing the pain is near impossible.The Best way I can describe it is
"Picture a Sever Brain Freeze at the Height of its Pain & Picture having the constantly from 30 mins to 2 hrs"
Now incorprate in severe Eye pain.

Whenever i wanna feel better about having them i say it could be worse.I could be disabled,paralyzed etc.
I never knew though that the pain was considered more painful than Amputation without anasthetic however I can definetly agree with it.

The shame is that there are so few people with Clusters we cannot even get a fair amount of research because I suppose were not a Large enough Market where as Migraines are very common.
Im glad i have people to speak with that know the trauma this cause.Sometimes i feel that they are so stressful on the body I will be doing permanent damage to my body and heart in the future.

Title: Re: Best way to explain a Cluster Headache to Some
Post by Jonny on Aug 25^th, 2006, 9:43pm

Dude, do me a favor and keep reading...its all here.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Title: Re: Best way to explain a Cluster Headache to Some
Post by brewcrew on Aug 25^th, 2006, 9:44pm

From the link at the left (cluster traits):

This information on this page was written by Margi, the wife of a cluster headache sufferer. Margi's husband (Mike) has suffered from clusters for 21 years. Margi is NOT a health care professional and this information should not be used to diagnose your headaches. It is simply her view of what cluster headaches are from her research and years of supporting a cluster headache sufferer.

A typical cluster headache cycle, for an episodic sufferer, most commonly appears during seasonal changes. The attacks generally last 6 - 8 weeks, having anywhere from 2 - 10 intense attacks a day, each one lasting (usually) between 30 minutes and two hours.

For many, the first signal of an impending attack is the presence of Horner's Syndrome which is a drooping of the eyelid and dilation of pupil on the affected side of the face. The pain quickly escalates from no pain to unbearable pain in 5 to 10 minutes and then subsides in the same manner it started, unbearable pain to no pain in 5 to 10 minutes. Attacks generally happen at the same time each day like clockwork. Attacks usually escalate from 0 to 6 or 7 (on the Kip scale) for the first day or two of the cycle, then 0 to 8 or 9 for the next few weeks, hitting 10 level pain directly at the peak of the cycle. The number and intensity of attacks increase steadily until the apex of the cycle is reached, bringing the most number of attacks per day with the highest level of pain. The attacks then gradually start to diminish until the cycle is completely gone and the sufferer is in remission until the next cycle. Remission periods are completely unique to each sufferer, but generally range anywhere from six months to five years.

For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly. Remission for chronic sufferers for longer than a 14 day period is very rare, more usually, only a few days at a time.

During a cluster attack, blood pressure elevates, heart rate increases, the body overheats, a ganglion lump on the back of the neck is quite common which becomes inflamed during an attack and diminishes when the attack subsides. Intolerance to light and sound is much more common with migraine sufferers than cluster sufferers, although some do report the same sensitivity and prefer to be in a quiet dark place to be alone, however, remaining motionless or falling asleep during a cluster attack is NOT POSSIBLE.

There is quite often nasal congestion and tearing from the eye on the side of the head that is being attacked. Attacks are usually unilateral (one-sided). Attacks normally occur on the same side of the face each cycle. Attacks very rarely "switch sides" in the middle of a cycle, but have been known to "switch sides" between cycles (right side one cycle, then left side the next cycle).

The pain is centered more on the face than on the rest of the head, specifically the eye, cheek, sinuses (which is why they are so often misdiagnosed as sinus infections). The sufferer can not function normally during an attack and quite often prefers to be left alone in order to deal with their pain. The attack commonly and regularly wakes victims from a sound sleep. The pain has been compared to amputation without anesthetic. Many mothers who are cluster sufferers describe it as a pain much worse than natural childbirth.

Quite often for a migraine sufferer, the slightest motion during an attack can be nauseating and they cannot tolerate any light or sound. It is rare that a true cluster sufferer can remain motionless during an attack because of the intensity of the pain. Contrary to migraines, kicking, thrashing, pacing, rocking and banging the head are common during an attack. Vomiting is not a common episode for most, unless it is a side affect of medication.

Contrary to some beliefs, there has yet to be determined a stereotypical cluster sufferer. The incidence is higher in men than in women but generalities are difficult to establish. There is an excellent sufferer's profile survey on our website available to further demonstrate this point.

For much more detailed information on cluster headaches, please read the medical information.

Please consult your health care provider (preferably a neurologist) to accurately diagnose your symptoms. Self diagnoses of your headaches can be very dangerous. Drug interactions and over medication from self diagnoses can be life threatening.

Health care professionals are gradually becoming more informed about cluster headaches thanks to organizations like O.U.C.H., but please be honest about your symptoms so that your professional has a better chance of offering accurate treatment to ease your pain.

Title: Re: Best way to explain a Cluster Headache to Some
Post by Paul98 on Aug 25^th, 2006, 9:55pm

After I get to know someone enough I usually tell them about the headaches I get. ( I do it because I want as many people to know what CH is as I can, I'm not looking for sympathy) The way I explain it to most people is: Picture the worst hangover you ever had. this is a 3 on the 1-10 scale. Migraines might get you to 6. CH is at 10. It does get their attention. I have never had someone state to me then; Oh, I get those too after hearing this.
-P.

Title: Re: Best way to explain a Cluster Headache to Some
Post by thebbz on Aug 25^th, 2006, 10:34pm

"If I have to explain, you wouldn't understand." :-X
jb

Title: Re: Best way to explain a Cluster Headache to Some
Post by Fredmyyster on Aug 25^th, 2006, 10:46pm

I aint never been a 10 on the Kip but , been dayum close ! Im just glad my Boss understands the pain. He has even gone so far as to say " i can have someone drive you home with pay no prob " An actual nice boss. The only other pain that has been worse was losing my P's. I feel so bad for anyone else that has CH's .... This is the Best site for CH sufferers.... And to think, i thought i was alone.....The pain i feel is that of someone taking a hook to the back of my left eyeball and Yankin as hard as they can saying " Sufferer On ! "

Title: Re: Best way to explain a Cluster Headache to Some
Post by chewy on Aug 25^th, 2006, 11:04pm

Stick a nail in their eye and whack it with a ball peen hammer.

Title: Re: Best way to explain a Cluster Headache to Some
Post by jon019 on Aug 25^th, 2006, 11:39pm

Brewcrew, thanks that was excellent.

thebbz: reminds me of what Louis Armstrong said about jazz, thank you. I have given up trying to explain. After their eyes glaze over I just say it's like the worst friggin migraine you have ever had or heard about. It hurts to REDUCE it to that but it can be so tiring.

Regards

Jon

(Edit)

Oops, sorry, didn't answer the question. Have never used this, just fantasized about it (usually after a kip 7+ or above).

OK, go out to the garage, open the car door, place a finger (or thumb, I don't care) in door jamb. Slam door on finger, open door, REPEAT, open door, REPEAT, open door, REPEAT... After about one hour, when you think this is more than I can POSSIBLY stand, keep doing it for , oh, say 30-90 minutes more.

Oh yeah, that MAY come close, but sorry, now that your done, REPEAT 3-8 more times in the same day. Do that for 8 weeks straight and THEN tell me, oh yeah, I had one of those ONCE.

(edit) again!

Oh geez, do I sound bitter. Sorry, new cycle started 8-1
and I am sooo tired...

Title: Re: Best way to explain a Cluster Headache to Some
Post by BarbaraD on Aug 26^th, 2006, 8:15am

I just tell them that comparing CH to migraine is like comparing a shark to a gold fish. And I have both migraine and CH.

I've gotten to the point over the years (maybe it's just my age) where I don't give a rip what anyone thinks. I hurt, I act crazy and that's just the way it is. Live with it!

Hugs BD

Title: Re: Best way to explain a Cluster Headache to Some
Post by Carl_D on Aug 26^th, 2006, 1:35pm

Take two screwdrivers, heat them up red hot and shove one in the eye and one in the temple.

Then, keep twisting for about an hour, trying to meet the tips together somewhere in between.

Meanwhile, someone has rammed a pole through the browbone all the way through to the back of the head at the base of the skull and is trying to lift you up by said pole.

Then, if they mention migraine I tell them, "Comparing CH to migraine is like compaing a scrape to a shotgun wound!"

If I am too wiped to explain (like that'll EVER happen ::) ) I just use one word: Skullfuck!

Peace,
Carl D

Title: Re: Best way to explain a Cluster Headache to Some
Post by Kirk on Aug 26^th, 2006, 6:56pm

Migraines are fer weenies. Get a real headache jerk off.

Title: Re: Best way to explain a Cluster Headache to Some
Post by georgej on Aug 26^th, 2006, 9:38pm

on 08/26/06 at 18:56:13, Kirk wrote:

Migraines are fer weenies. Get a real headache jerk off.

LMAOPMP!

I don't think I can improve on some of the graphic descriptions of the physical pain here--but the indefinable thing for me has always been how to communicate the slimy, vile sensation of utter, crushing doom and horror that you feel when one is coming on.

I don't think I've ever made anyone understand it. I don't half-understand it myself--there's really no other emotion to compare it to. Maybe the Germans could come up with a word for it. After all, they came up with "Weltschmerz" and "Schadenfreude"--words for emotions that have no English equivalent.

Emotions are like smells, I think--we know what they're like, but it's hard to define them.

Regards,

George