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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> How do you decribe the pain?
        
(Message started by: chili_666 on Oct 10^th, 2005, 7:29am)

Title: How do you decribe the pain?
Post by chili_666 on Oct 10^th, 2005, 7:29am

Hello there,

I ´ve been around a couple of times, but haven´t really posted anything. I´ve been suffering from episodic clusters for about 10 years or so. I really don´t know for how long, but I have been diagnosed 5 years ago and I´ve made trips to the hospital because of my headaches a few times and years earlier.

Anway, so I am back in an episode. Not that much to worry, got my medication - so it´s not going to be that much of a problem. Verapamil and Imigran bust any attack I´ve had so far.

The only problem that I have are the people around me. Well, there is my group of supporters of course, family, girl-friend or very close friends. Those are fine. They know that they help me best by leaving me alone to deal with it and just be there for me whenever I get really depressed or stressed. They seen what an ***hole I can be, when I have an attack. How mad I can get at anything... and in how much pain I had to be to do the things to me I did before I was diagnosed and got the right treatment.

But how do you explain to somebody you have only seen once or twice? It´s not that they don´t believe me - they do most of the time. But how can I explain to them what is happening to me? How can I tell how intense the pain is? What it makes me do? (If I don´t use my medication, of course)

Seriously, I´d like to tell them - not to make me look good, or to cash in a lot of pity - I just want them to know and treat headaches with the right "respect" (for want of a better word). I reckon you all know that feeling, when somebody says "Headache? Ah, go get some Aspirin and stop whining!". They don´t say that, but still... Or worse they come running after you, when you have a top-of-the-line attack and watch you inject yourself and then try to help and console you. And don´t believe you when you pull yourself together the best you can and just tell them quietly to leave you alone for 5 minutes..

And of course, the topic always arises - even if I don´t have an attack in front of everyone. I am very very very outgoing person. I like to have fun, I drink loads of alcohol, talk way fatser than I can think and all that. I don´t do that while in an episode. Not only do I stop drinking, but my life tends to slow down a bit - I am more self-centered (not to say selfish ;)) and a lot more quiet. This is partly the medication - my blood pressure is not too high in the best of times and with Verapamil - and mostly because of the cluster itself. Though I tend to forget during the painfree times, I still see life a lot differently during episodes. People notice that and ask. Often they are really interested and want to know.

But I am not really into telling anyone first thing that I used to bash my heads against lamp-posts in the middle of the night until I started bleeding. Or that I prefer to do the dance around busy streets during nights, because nobody can hear you scream... So often i don´t know how to describe what is happening to me.

Geee, loads of text. Sorry about that - but this has been bugging for the last two episodes and I just feels great to get it off my chest. Thanks.

Anyway, do you try at all to explain to distant friends? Or do you just leave it at that? Or don´t you go out at all while in an episode?

chili_666

Title: HRe: How do you decribe the pain?
Post by Filbert on Oct 10^th, 2005, 7:48am

Hi
Perhaps you could get the more interested ones to read this.

http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc

Title: Re: How do you decribe the pain?
Post by giffy76 on Oct 10^th, 2005, 11:40am

Funny you bring this up. I spent the weekend with 4 of my buddys camping and what not. One of em started bitching about his migraines [smiley=laugh.gif] I told him I wished I got migraines and how would he like to roll on the floor, beating his head against it because there was a red hot ice pick jammed behind his eye that was being twisted around and pulled in and out. He shut up.

Title: Re: How do you decribe the pain?
Post by seasonalboomer on Oct 10^th, 2005, 11:48am

on 10/10/05 at 11:40:11, giffy76 wrote:

i think that's called one-upsmanship and not altogether a great way to keep friends. i don't get migraines, but I can tell you I'd think you were kind of a jerk if I was sharing my migraine experience and you stepped all over it because I didn't experience the kind of pain you experience. i know the feeling of trying to get people to understand "our pain" but i think there are times when we overdo it. you want sympathy? gotta give sympathy too.

Title: Re: How do you decribe the pain?
Post by giffy76 on Oct 10^th, 2005, 11:59am

on 10/10/05 at 11:48:12, seasonalboomer wrote:

You are correct. But, I said that, after a 20 minute conversation a 20 minute (drunk) conversation about migraines vs. CH and trying to explain to him that I dont get migraines. And I never ask for sympathy, just understanding.

Title: Re: How do you decribe the pain?
Post by nani on Oct 10^th, 2005, 12:18pm

I agree about one-upping. I had a brain hemmorhage and major brain surgery. In a way, that made my CH like a walk in the park because the pain (24/7) didn't let up for about 3 months. Sadly, it doesn't make it hurt any less when I get hit with a CH. Pain is pain... and it all sucks.
Now...this is how I describe CH:
I suffer from a neuro vascular pain disorder, often called suicide headaches and the worst pain known to man by medical professionals. It's called (use your fingers here) " Cluster headaches" .

Title: Re: How do you decribe the pain?
Post by Langa on Oct 10^th, 2005, 12:30pm

This was one of my first posts here...this is how I can best describe a cluster...

I was in the ladies room today washing my hands when a co-worker walked in and asked me how I was doing with regard to my headaches. I answered that I was much better now that they went into remission (over that cycle now about a month).

She accidentally caught me sucking on the oxygen once during my 4 month cluster bout in a back supply room where my boss told me to keep it should I need it. Afterwards she asked me why I needed the oxygen and I explained. Her response? "Yeah, I know. I get severe migraines. Nothing like those. Hope you get rid of your headaches soon". She gave me a smirk and never spoke to me again.

Today, she said the same thing..."As I said before, I can relate, though i'm sure your pain is not as bad as the migraines I get".

For the first time in my life I decided to really educate someone on the horrors of cluster headaches. I walked over to her, looked her straight in the eye and said "Really? You're mistaken. There is something more horrible than migraines, not to downplay your pain because I have loved ones that get migraines, but let's see, you can lay down and close your eyes in the dark and fall asleep. Me? I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears, the sweats and the level of lunacy you reach where only suicide seems to be the only way out, but it gets better...because of the trauma my brain just went through, I'm left feeling like I need to sleep for two days, but I can't, you see I have to keep pressing in and trying to have an almost normal life, almost I say because I live in constant fear, dread and anxiety of when the next one will hit me. Do you know what it's like to live in fear? Think about it. It's like you're trying to hide from an unseen monster who will pounce on you when you least expect it. How about dreading sleep because that's when it really comes to get you and by that time it wakes you, it's been there so long you have no chance of a good fight. So you sit back and wait for it to be done with you. Knowing that it will come back when it damn well feels like it. But imagine living like this with no breaks. Mine will go away, but others live like this for months/years on end. Still, none of that even compares to the loneliness we feel because most of the world isn't informed of this horror. I won't downplay your pain if you don't downplay mine. Deal? Have a nice day"!

Langa

Title: Re: How do you decribe the pain?
Post by unsolved1 on Oct 10^th, 2005, 5:59pm

Simply the worst pain i've ever endured. I've had broken bones (leg and arm) and kidneystones (twice) and neither compare to a full blown cluster. Its like a hot poker twisting in my eye.

UNsolved

Title: Re: How do you decribe the pain?
Post by Sandy_C on Oct 10^th, 2005, 6:09pm

Usually, I don't even try to explain what the pain "is". There is no adequate description. My family (husband only - not my daughters who have never witnessed a hit), is probably the only person I know that really understands what my pain level is.

I had a customer in my office just last week, who knew that I suffered from "headaches". Now, I've known this man for almost 18 years so I feel very free to just speak my mind whenever necessary. He asked me how my headaches were and I told him that I was out of cycle so I was absolutely great. He then said "you know what you can do for your headaches?" I stopped him right there. It was 6:30 pm and I wanted to finish his design so that I could go home. I told him STOPand I said until you learn what a cluster headache is, do not even attempt to give me advice. I gave him this website and the OUCH website and told him to go educate himself. I had neither the time nor the inclination to teach him.

Bad me? No, I just get so tired of people telling me what I can do for my "headaches".

Piss on all of them.

>:(

(Sorry, I'm venting)

Sandy - going to have a beer now.

Title: Re: How do you decribe the pain?
Post by maffumatt on Oct 10^th, 2005, 10:03pm

mine start with pressure behind my right eye, within 5 min it has moved to my temple and ear. If my teeth start to go numb I know its going to be a bad one. When its bad my teeth go from being numb, to feeling like they are all being ripped out at the same time. My eye feels like it is being pushed out from the inside out while an icepick is being drilled through my temple. Its a constant drilling pain that doesnt let up.

Title: Re: How do you decribe the pain?
Post by Kate in Oz on Oct 10^th, 2005, 10:50pm

Hey Chili 666,

I think I read it on here somewhere - that the pain is the equivalent to having a limb removed without any anesthetic (sp?) I've been known to use that one to try to explain the pain to people - and sometimes just for the shock value. A headache is a headache is a headache - ch IS NOT!

I had a child a couple of years ago - the only pain relief I was given was a couple of panadol :o - and yeah it hurt like hell but it was NOTHING compared to a KIP 10. I think the fear of attack is a pain in itself - cos you know that's not the end of it. You don't just get one headache!

Kate

Title: Re: How do you decribe the pain?
Post by Jasmyn on Oct 11^th, 2005, 12:15am

Chilly, Langa hit the nail on the head or the head on the nail.

I'm gonna print that one, memorise it and use it for future reference.

Title: Re: How do you decribe the pain?
Post by chili_666 on Oct 11^th, 2005, 6:56am

on 10/10/05 at 22:50:18, Kate in Oz wrote:

@Kate

That is actually a really good one. I´ll have to memorize and use that explanation.

@all the others

Thanks. I think i needed to know that I am not alone with my frustrations. Funny how the cluster gets to you. First its the pain and then its really tiny unimportant things, like people who don´t believe you. "Suicide headaches" might also be a good one - the description is on the spot, but I think its got a little bit to much pathos in it.

My girlfriend came up with a really good way of shutting people up. A friend of ours went into "My headache is worse than your headache"-bad-kung-fu-flick mode and started bitching about her migraine. After a couple of minutes my girlfriend grabbed into my coat pocket, put my Imigran shots onto the table and said: "Well, his headaches can´t that bad. He just uses one of these and he is painfree after a couple of minutes".

Don´t get me wrong. I know that this is one-upmanship and I do know a couple of people who suffer from migraines. I know that they go through a lot of pain as well. But I also know, that they haven´t been that far out as we do. They don´t try smashing their heads in on various bits of furniture, just to make it stop...

chili

Title: Re: How do you decribe the pain?
Post by AussieBrian on Oct 11^th, 2005, 7:26am

I heard the Word of God (aka Prof G.) on a radio program some years back -

"The pain of an individual headache is roughly that suffered by a woman during a long and hard labour. The difference is that these people do it every day, sometimes two or three times a day, for weeks and months on end. It's quite unbelievable what they go through."

Title: Re: How do you decribe the pain?
Post by Jeepgun on Oct 11^th, 2005, 9:47am

I don't usually talk about it. If someone says they have migraines, or they usually just take aspirin and lie down, I've gotten pretty good at nodding and being sincere when I tell them that I hope they are getting relief from the pain.

If someone really wants to know what it's like, I tell them that it's like someone jamming a screwdriver into my right eye, and then digging it around and around for a half hour, several times within a 24-hour period, every day, for 8-12 weeks.

Even that doesn't really do it justice... It's really and truly beyond words, and I'm weary with explaining it, so I mostly keep it to myself.

Title: Re: How do you decribe the pain?
Post by Jimmy B. on Oct 11^th, 2005, 12:30pm

One time my neuro asked me to try to explain the pain of a Cluster...I told him I was hard pressd to think of a description..but that first I'll get a slight "twinge" at the back of my neck and then an ache in my right eye...within minutes it builds to a cresendo of exquisite pain in my right eye and nose..."it feels as if my head is giving birth to my brain and can't decide whether to use my right eye or right nostril as the birth canal." and I told him...that was putting it mildly.

Title: Re: How do you decribe the pain?
Post by rbmb on Oct 11^th, 2005, 6:44pm

Although I wouldn't wish these things on anyone (well.......there are a few people.........no, not even them), I wish there was a way to let others experience CH pain first hand if only for a few minutes instead of trying to describe what its like. It's like no headache I've ever experienced. I get pretty depressed when a cycle starts because I know what I have to look forward to.....agonizing pain every night for the next 2 or 3 months.
Rich

Title: Re: How do you decribe the pain?
Post by Sean_C on Oct 11^th, 2005, 8:08pm

One word.......................uncontrolable :-/

Title: Re: How do you decribe the pain?
Post by TxBasslady on Oct 11^th, 2005, 9:31pm

I'm not certain I've ever been successful trying to explain .

Folks nod their head...and go on. No big deal to them.

But for me, it's real.....and painful....and undoubtedly the worse pain I've ever experienced.

Ya know, I think you either have to experience the pain first hand....or support one who suffers first hand, in order to be able to really understand it.

Hell, the Doctor's don't even understand it. Most CH'ers educate the docs.

Jean

Title: Re: How do you decribe the pain?
Post by Jeepgun on Oct 12^th, 2005, 6:52am

You're right, Jean. I've said this before, myself. Until the pain is real to the person, and until they've either experienced it or watched someone go through a hit, they really don't, can't, and won't ever understand it. In a way, I'm grateful. I would never wish this on anyone.

-Frank

Title: Re: How do you decribe the pain?
Post by rextangle on Oct 12^th, 2005, 8:43pm

This is what you can say to people who don't know:

Pretend you're eating ice cream too fast. Now multiple that pain by 100. Take a metal claw heated too 600 degrees farenheit and shove it through your eyeball. Once you do that, start twisting the claw inside your brain very slowly and keep pushing until you grab the rear muscle of your neck and then twist some more... slowly. And this could last up to 3 hours.
Now remove the claw, rince with cold water and go have a cigarette. [smiley=smokin.gif]

Title: Re: How do you decribe the pain?
Post by MJ on Oct 12^th, 2005, 10:11pm

I descibe the pain when asked much as Rextangle says. I start getting into the description and then they say whats an ice cream headache, never had one of those.
At wich time I quit describing and say it's a nasty headache.

On the rare occasion when caught in the act of an attack.
Someone will say are you ok? With a hand at my head I say no but will be in a few minutes. its called a cluster headache it goes away.
They say whats it feel like?
As I lift my chin from my chest, cock my head slightly, look up at them from the top of my one good but bloodshot eye, with snot running from my nose and tears from the other eye dripping from my cheek and occasional drool from my lips my face as white as a ghost I still say I'll be ok in a few minutes.
About an hour or so later I look as good as I allways do and they never ask again.
But many have at that point made there own attempt to find out what a cluster headache is and invariably they tell me about "THIS" cluster site on the internet that I should check out.

I make the attempt to go out during cycles but allways am searching for the escape routes. Those around me run interference and know and accept that I just have to disapear for a little bit but will be back.

Title: Re: How do you decribe the pain?
Post by ExplodingEyeBall on Oct 13^th, 2005, 12:40pm

It's useless to try describing the pain of CH to most people. Especially the ones who have had other painful problems like migraines, amputation, burns, etc... They all respond by saying "Oh that's nothing, you should feel _________ (fill in the blank'.

For me it just starts out by feeling something like someone touching the side of my eye real softly with something sharp. It then starts to hurt over the top of my ear. Within 10 minutes, it's all out agony with all of my teethand my jaw hurting, the entire side of my head hurting and most of all the pressure behind my eye. It feels like someone pressurized my eyeball by putting a balloon in it and they are slowly infalying it to the point of it exploding.

Title: Re: How do you decribe the pain?
Post by catherinelane on Oct 13^th, 2005, 5:15pm

i think the only way the pain is ever fully understood by someone who isnt a sufferer is to witness an attack for example my mother used to say oh my migranes this my migranes that blah blah blah of course i never said anything because its my mother... but i sat there silently seething thinking if only you knew but one evening my husband had to be up at 3 am to work and wham i started to get hit not to wake my hubby i stauntered over the road to my mothers house where i got hit by a full blown kip 10 right in front of her i started to methodicaly fist my head as hard as i could until i was nearly unconcious.............. she has never harped on about her migranes again........ not a peep

Title: Re: How do you decribe the pain?
Post by BMoneeTheMoneeMan on Oct 14^th, 2005, 12:23am

Its tough to describe it. I do hate that people dont know what its like. Migraines are more popular, and everyone knows they are a bitch, but cant even begin to understand the pain of a CH.
I think it may have been here on this site, i read that some women said the pain was worse than childbirth.
I also tell people that if you take a 12 hour migraine's pain and concentrate it down to 90 minutes all at once, that can begin to describe the excruciating intensity of them.

The thing i hate too is when people just dont know about them, and you always get the "oh, i got headaches too, i hear you". It always makes me laugh when people say things like " oh, when i am hungover, my head hurts real bad too", or "oh, yeah, i get headaches so bad i gotta take 2 excedrin and go lie down for 20 minutes."
PF wishes to all.
BMonee

Title: Re: How do you decribe the pain?
Post by Kim_for_Todd on Oct 14^th, 2005, 8:05am

One way for people to have some understanding of the pain is to read this site. This thread in particular. It's been a Godsend for us in explaining to family and close friends.

My sister has migraines and after reading Simon's collegue letter she was in tears. She then said she felt quilty complaining about a migraine.

Title: Re: How do you decribe the pain?
Post by Lissa on Oct 17^th, 2005, 9:25am

on 10/10/05 at 12:30:16, Langa wrote:

I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears,

OMG. I got a cluster just reading this. ;;D ;)

Title: Re: How do you decribe the pain?
Post by zanychef on Oct 17^th, 2005, 6:35pm

one of the best ones i can say is that its an intense orgasm of pain
otherwise i just shut up and let others tell me about their pain,and think well i wouldnt like that either!

Title: Re: How do you decribe the pain?
Post by Kim Y. on Oct 18^th, 2005, 8:08am

How do I describe this ......to others.

Well I have tried nurmerous things, the letter, descriptions of the stabing in the eye, the pain that will never end, Jumping around, rocking, crying and so on.

One time I told a coworker that the day wasn't a good day and my headache was really bad even told my Dirctor of Nursing just in case I needed to go home. One of the nurses I warned made a comment about which resident I recommend run the courts so trying to have a sense of humor I chose one. :-/

Well needless to say to spite all that I stayed at work and got hit and she was there Hubby had to come and get me and she wouldn't leave my side. She was crying too. That day my hubby had to take me to the ER because the Trex 6mg didn't work and I was dying.

Next time I worked she was apologizing and admitted that she didn't think it was that bad.

Of course still trying to convince my fellow students but in time I am sure they to will understand.
Kim

Title: Re: How do you decribe the pain?
Post by Drk^Angel on Oct 19^th, 2005, 7:42pm

My beast has saved the pain from a million torture victims (bamboo under the finger nails, electric shock, testicle vise, filing taxes, etc.) and mixed in a bit of pain from walking on broken glass covered in rubbing alcohol, and just a touch of salt in a fresh papercut, fermented it for a few decades, then distilled it to get the most pure, festering pain possible, then concentrated it to a small little spot directly behind my eye, where it then grew tentacles overed in rusty razorblades, poisoned fangs, infected fish hooks, and oozed battery battery acid all over that side of my head just before the beast started stabbing a white hot ice pick into my eye over and over again until there's nothing left but a bloody, steaming, throbbing pulp to put back together and start all over again in a few hours.

PFDAN................................. Drk^Angel

Title: Re: How do you decribe the pain?
Post by mynm156 on Oct 22^nd, 2005, 2:40pm

It reminds me of a Brain Freeze that doesnt go away after a few seconds. From eye to my teeth!

Title: Re: How do you decribe the pain?
Post by burnt-toast on Oct 25^th, 2005, 6:08am

"Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space."

My tag line lists the utensils - Now the process.

1). Light torch close to face and begin rotating egg
beater

2). Forcefully insert egg beater through eye socket
and increase rotation speed.

3). Insert lit torch slowly through nasal cavity until it
reaches close proximity to egg beater in
brain. Quickly open gas cylinder to full. (Note: Do not
forget to keep egg beater at full rotation just
because torch reaches maximum temp.)

4). Adjust jaws of vise-grips until nearly closed.
Clamp to scalp, jaw, teeth, forehead, temple
(multiple devices are required to achieve
optimum results). (This choice is not yours to make
so just play it by ear, Note: this may also require
an additional device)

5). Insert pipe expander through invisible opening
between egg beater in eye socket, and propane
torch in nasal cavity. Expand to full and hold this
position until fear of pain enduced heart attack
peaks.

6). Now walk, run, bang head, etc., etc. (Note: take
your time, be creative here, this is the only thing you
have some choice in so do it right).

7). Best practices call for slow removal of devices in
reverse order of insertion. (this choice is also not
yours to make so be prepared for some creativity
here). (some substitution of devices may take place
here just to keep things interesting). Regardless
you'll know things are winding down so you won't
mind these last minute substitutions too much.

8). Repeat as required.

SO NOW:

"Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space."

Title: Re: How do you decribe the pain?
Post by Beastfodder on Oct 31^st, 2005, 7:30am

You spend half a lifetime wondering just how bad can a migraine be from the people who complain about them - then the beast comes to live with you.

There's more to life than complaining and since it what doesn't kill you makes you stronger - then collectively we must have a fair bit going for us.

And of course this website is one of those.

Title: Re: How do you decribe the pain?
Post by hoosierdaddy on Nov 2^nd, 2005, 4:43pm

Hello all,
..."it feels as if my head is giving birth to my brain and can't decide whether to use my right eye or right nostril as the birth canal."
That's the funniest thing I've heard for days. Thanks for that. [smiley=laugh.gif]

I don't let anyones opinion bother me. I suffer and go on and rarely attempt to explain the pain. But I would say everyones pain threashold is different and we have a tolerance that is hard to match. I had both my nipples pierced while totally sober, and the split second that the hollow needle was piercing my nipple was the closest I have ever came to a non CH related 10. But the Pain from the piercing ended as soon as the needle was through. For me I relate that same pain but piercing from my right eye to the base of my skull constently until the trex kicks in.

So I would tell someone who wants to know what it feels like to go pierce their nipples and then thank God they are not CH Suffers.

C-Ya
Greg

Title: Re: How do you decribe the pain?
Post by Jonny on Nov 2^nd, 2005, 5:07pm

I just tell them that I would rather be fucked in the ass by John Holmes for three hours without any lube ;;D

Title: Re: How do you decribe the pain?
Post by rextangle on Nov 2^nd, 2005, 5:52pm

on 11/02/05 at 17:07:49, Jonny wrote:

I just tell them that I would rather be fucked in the ass by John Holmes for three hours without any lube ;;D

That's what you said about a hangnail Jonny! [smiley=laugh.gif]

Title: Re: How do you decribe the pain?
Post by E-Double on Nov 2^nd, 2005, 6:10pm

Do it with pictures or if they are lucky give them a real viewing
http://im1.shutterfly.com/procserv/47b5ce39b3127cce94e00d01bad100000026133QasWrlwx0
http://im1.shutterfly.com/procserv/47b5ce39b3127cce94e00d683b8800000016103QasWrlwx0

Then say hangnails are much worse

Title: Re: How do you decribe the pain?
Post by Mr. Happy on Nov 2^nd, 2005, 7:03pm

Damnit Eric......that is NOT a Clustermasx. (http://clustermasx.com) And you're one of the smart ones.
I'm acrimonious.

Herd, Water, Cheap Sex.
RJ

Title: Re: How do you decribe the pain?
Post by E-Double on Nov 2^nd, 2005, 10:03pm

RJ,

It's in the mail......waiting patiently!

E

Title: Re: How do you decribe the pain?
Post by Lastdaddy on Nov 6^th, 2005, 7:14am

:) Ther best one is when ya tell someone ya have CH, and they Oh Yeah I know what you mean I get bad Migraines!! What a joke that is HUH??. One nite I went to the ER with a KIP 10, The nurse on duty was extremely sympathic, She gave me my shot but didn't say much at all. About 20 minutes when I was up and coherent she came back and told me that she has CHA also so she knew I needed to be left alone. She also told me that as a mother with CH , she'd "rather give birth to a hundred babies than to have 1 CH". I have also had the unfortunate experience of having a Kidney stone and I can tell you first hand that while the stone process is not something I look forward too, I'd much rather have that than another CH Cycle!! And in the 33 years of having CH the best was , during another nite at a different ER I had a woman DR who had the distinction of having all three Pains. She had three Boys all Natural , 4 bouts with Kidney stones , and lived with CHA for 27 years. Know what she told me?? The Child Birth and the stone pain couldn't even come close to the pain she suffered while in a CH Cycle .Now we all know that most women will tell you that a man could never endure the pain of childbirth. A favorite argument of feminist Mothers. Now when I haer that I just smile to myself and say " yeah keep talking Lady cause you haven't got a clue " !!!
Wishing all of us PF D&N,
Nico

Title: Re: How do you decribe the pain?
Post by mabus on Nov 12^th, 2005, 6:48pm

on 10/12/05 at 22:11:52, MJ wrote:

I descibe the pain when asked much as Rextangle says. I start getting into the description and then they say whats an ice cream headache, never had one of those.

I frequently got ice cream aches when I was a kid, as did many of my friends. I just assumed that everyone did. But my neuro told me that not all people DO know that vaguely similar to CH feeling, as they aren't susceptable to "brain freeze'. Apparently those people are never CH sufferers.

Did anyone out there that has clusters NOT get brain freeze when they were a kid eating ice cream?

Title: Re: How do you decribe the pain?
Post by owk on Nov 16^th, 2005, 1:41pm

Sorry mabus. I get CH attacks, episodic. I never got brain freeze.

Title: Re: How do you decribe the pain?
Post by Shaz on Nov 24^th, 2005, 9:01am

The pain description, I wont bother with because it is so similar to what the majority of you out there experience. But I know just how frustrating it is to try to describe to other people. As some of you have said unless somebody actually sees you going through an attack they have no idea. Luckily all my family have at different times and they are all fantastic....

There was a quote on one of the replies saying that a doc compared it to a long hard labour. I have had two very long hard labours. Believe me, there is no comparison.... Give me more babies any day...........

I sit and read through so many of these posts and when I can contribute I do, but so few people are of aware of CH. Nobody I know had ever even heard of them.

THANK GOD FOR YOU LOT AND THIS SITE. YOU HELP ME GET THROUGH IT. I AM NOT ALONE ANYMORE XXX

Shaz :-* :-* :-*

Title: Re: How do you decribe the pain?
Post by MarcSeidl on Dec 1^st, 2005, 11:43pm

Wow.

My doc told me today that my headaches recently could be headaches. But. The pain I had is NOTHING compared to what many of you are describeing. Yes, i had the Burning pain behind my eye, with the eyes bloodshot and running, and my nose too. But I was able to fall alseep and even sit through one of my college lectures. The pain was no were near the levels you are talking about.

My hats off to those of you with that horriable pain.

Title: Re: How do you decribe the pain?
Post by Pinkfloyd on Dec 4^th, 2005, 12:45am

Send them to www.clusterbusters.com and have them scroll down to the video clip.
Once they have seen it, and apologize, and tell you they wish there was something they could do to help, tell them to scroll down a little farther to the "donate to research" tab.

Bobw

Title: Re: How do you decribe the pain?
Post by boomer52 on Dec 4^th, 2005, 2:03pm

mine start out making my left eye twitch and little needle like stabbing sensations, they keep getting worse until my left eye and temple area feel like it has a hot coal being pressed around inside. The pain gets so bad that I think I will pass out or sometimes I think I am dying, which doesn't seem like a bad alternative at the time.