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        Cluster Headache Help and Support >> Cluster Headache Specific >> What Do you Say!!!!!!
        
(Message started by: j_erickson85 on Mar 11^th, 2006, 2:51am)

Title: What Do you Say!!!!!!
Post by j_erickson85 on Mar 11^th, 2006, 2:51am

i wasat work tonite. I am a nurse and thought that other nurses would understand pain and sympathy..I was wrong >:( She told me that she would rather have a cluster than a Migraine headache. She told me how bad it sucks when you LAY DOWN AND TRY TO SLEEP IT OFF AND CAN'T. I told her yes your are right i would rather have clusters than migraines. What do you say to a person who just doesn't get it. Do i dare take a nail gun and shoot it through her head ;) I know thats mean but right now in the middle of a cycle knowing in four hours i'm going to be "dancing" it really pisses me off.

Title: Re: What Do you Say!!!!!!
Post by Kevin_M on Mar 11^th, 2006, 7:01am

More people might be able to identify with the long and painful debilatating bouts of migraine experiences and all the time lost having them. It may be harder to imagine a much more intense and unbearable pain and how scary it can seem reacting to a high Kip for the first time; and then to learn how often it occurs. I'm sure it might be a memorable experience to compare then.

Title: Re: What Do you Say!!!!!!
Post by Melissa on Mar 11^th, 2006, 7:35am

Honestly I've had both, and I wouldn't want either. Hey, at least I can function (somewhat, LOL) inbetween hits. Either way, they both suck.

Title: Re: What Do you Say!!!!!!
Post by rapunzel on Mar 11^th, 2006, 8:19am

One of the girls at my work laughed when I told her what I was going through! She laughed and said "I would be so happy if my migraines only last fortyfive minutes". Then she walked away- I too had to resist the urge to push a drill through her temple....and also to spray the air freshener that is a known trigger for her migraines.

If everyone had tact, the world would be pretty predictable.

Thats what makes this board so wonderful- everyone here understands, and also has had people who don't understand.

Title: Re: What Do you Say!!!!!!
Post by chewy on Mar 11^th, 2006, 9:02am

Quote:

"I would be so happy if my migraines only last fortyfive minutes".

Tell her to take all of her migraine pain from the last two years and cram it all into 45 minutes and multiply by 5.
See how happy you are then?

Title: Re: What Do you Say!!!!!!
Post by Svenn on Mar 11^th, 2006, 9:10am

Cant do other then laugh even so tragic this cluster is.
My mominlaw was a registered nurse before retiering and have a lifetime with experience.

This is what she said to me and infact still believe

"ITS JUST ANOTHER HEADACHE AND NO NEED FOR PAINKILLERS,SICKLEAVE OR MEDICAL DISABILITY

Im laughing of it now but was hard to believe when she was active nurse and trow that in my face

Hopefully not many with that attidude in the business

Svenn

Title: Re: What Do you Say!!!!!!
Post by pattik on Mar 11^th, 2006, 9:52am

I have all but given up trying to get people to relate. Pain is such a relative thing from one person to the next anyway, and there is nothing to really compare to CH that most people could understand. So I just think to myself that "they" are fortunate to not be able to relate, and when I need some understanding, I have my friends right here. ;)

Title: Re: What Do you Say!!!!!!
Post by mynm156 on Mar 11^th, 2006, 1:54pm

Oh YEs dont even get me started on that. I am an RT and have gone threw the same. I hate it when people say oh I get those too and have no Fing clue what the hell they are talking about. I just move on because they are too ignorant to live much less take care of patients. I had one Nurse who on our great 1-10 pain scale did not believe in 10. I always wince when she asks someone about it.

Title: Re: What Do you Say!!!!!!
Post by Richr8 on Mar 11^th, 2006, 2:22pm

I don't bother even trying any more. People just don't get it, and never will. I come here for comfort where I know people understand and quit trying to convince the rest of the world how bad they are.

Title: Re: What Do you Say!!!!!!
Post by Gator on Mar 11^th, 2006, 9:25pm

on 03/11/06 at 02:51:10, j_erickson85 wrote:

Do i dare take a nail gun and shoot it through her head ;) I know thats mean but right now in the middle of a cycle knowing in four hours i'm going to be "dancing" it really pisses me off.

If you decide to do this, make sure she is tied down and sees you heating the nail up to glowing red hot as she wouldn't get the full effect otherwise. You know - the anticipation of it coming, the dread at not being able to do anything to stop it and the burning pain once it hits...

Okay, Okay...just kidding. yeah, right

A lot of people can't comprehend past their own experiences. The worst pain that exists is the worst they have ever felt. It is sad that this came from a nurse, but whatcha gonna do? It's not worth getting into a pissing match over.

Maybe you could print off some information and just leave it laying where dipstick will be sure to find it?

Title: Re: What Do you Say!!!!!!
Post by j_erickson85 on Mar 12^th, 2006, 12:01am

I went back to work today and again were on the topic of pain. I said that i know pain and she responded with "are you talking about those weak ass headaches you get again" I just about lost my mind when she said that. I remembered what i had read on this here message board and politely got out of the conversation. and had a smoke..............................

Title: Re: What Do you Say!!!!!!
Post by Melissa on Mar 12^th, 2006, 5:44pm

on 03/11/06 at 21:25:33, Gator wrote:

A lot of people can't comprehend past their own experiences. The worst pain that exists is the worst they have ever felt.

This should be ingrained into every human beings psyche.

Great one Gator. :)

Title: Re: What Do you Say!!!!!!
Post by Melissa on Mar 12^th, 2006, 5:47pm

on 03/12/06 at 00:01:46, j_erickson85 wrote:

"are you talking about those weak ass headaches you get again"

Sounds like either you work at a really rough company, or she's just really a bitch. :-/

Good for you to know when to let it go. :)

Title: Re: What Do you Say!!!!!!
Post by sandie99 on Mar 13^th, 2006, 2:39am

I've stopped counting how many times I've heard people tell me "it's just headaches"... ::) Luckily for me, in those times when it truly mattered, those people understood it.

I know that mum likes to tell people that I have "ch, which is one kind of migraine", because she thinks that people will understand it better like that... I can understand that she does that because migraines are more known, but still I correct her every time and tell things like they are. I know that each time I do that mum is upset... But ch is less known than it should be here in Finland, too, so it's my resposibility as a clusterhead to do my part in sharing the right kind of information about it.

Part of the problem is that our pain tolerance is different. I actually know a person who stayed at home for three days after she accidentally hit her finger to a table...

Sanna

Title: Re: What Do you Say!!!!!!
Post by BarbaraD on Mar 13^th, 2006, 8:18am

I use the analogy that comparing a migraine to a CH is like comparing a goldfish to a shark -- go put that in your pipe and smoke it witch!!! And YES, I have both migraines and CH! "Weak ass headaches" My aunt Fanny!!!

We've got to come up with a NEW name for these things!!! We get no respect at all.... :(

Hugs BD

Title: Re: What Do you Say!!!!!!
Post by seasonalboomer on Mar 13^th, 2006, 10:24am

on 03/12/06 at 00:01:46, j_erickson85 wrote:

This one is a piece of work. usually I say ignore folks like this. But, this one sounds like the kind that could be a problem. Please print some of the data you can link ot from here and have a serious conversation with this person and tell them that it is important to you that this person understand, and that you are not looking for sympathy, but as a co-worker it is important to you that you make others that you work with aware of this condition, should you ever be at work and get a CH. This person needs de-fusing (even if they think they are being funny). Time for a chit-chat.

SCott

Title: Re: What Do you Say!!!!!!
Post by Gator on Mar 13^th, 2006, 1:32pm

on 03/13/06 at 08:18:24, BarbaraD wrote:

We've got to come up with a NEW name for these things!!! We get no respect at all.... :(

Hugs BD

I absolutely agree with you Barb. The name of the disorder minimizes the severity of it. It's like calling an amputation a boo boo.

I have come to hate the term cluster headache. This is not a headache in any sense of the word, except that pain is in my head. Depending on who I am talking to and why, I don't even use the term "cluster headaches" at first. I tell them I have a neuro-vascular disorder which causes excruciatingly severe pain in and around my right eye.

Title: Re: What Do you Say!!!!!!
Post by Sandy_C on Mar 13^th, 2006, 4:53pm

The people who are dear to me know all I can teach them about my CH. Several of them have seen me with a full blown hit. This was at the very beginning of my first cycle ever, and they were frightened out of their minds for me, thinking I was having some sort of stroke or something (which was nothing compared to what I was thinking was wrong with me). Since then, I've learned, and other than my husband, nobody has seen a hit any higher than a 5, because I just disappear for awhile. I got hit with a 4 during my daughter's wedding reception, but I had it set up with the banquet manager of the club we were at who had a small room unlocked, only for me. I missed about 25 minutes of the reception, but was able to come back as soon as I thought I could function as the mother of the bride.

Those of my friends who have never seen a hit, ask questions, and I try to answer them. If one starts out with the "Oh yeah, I get those too" scenarios, I very quietly and politely tell them "No, you don't - you never have. If you had, you wouldn't be talking so stupidly". I then tell them to go home and google "cluster headaches", and then give me a call and tell me again that you get what I get. Now they understand.

Sandy

Title: Re: What Do you Say!!!!!!
Post by thebbz on Mar 13^th, 2006, 9:59pm

;;D
I posted this a few years ago.l was returning to work from an ER visit and a coworker asked snydly," Hows your headache?" I replied snydly,,,"How about I rip your arm off at the shoulder, pat you on the back and ask, Hows your arm?"
That unfeeling woman you work with...Start with her,I know you want to rip her arm off and hit her with it. [smiley=laugh.gif] Someone that hasn't felt it could never get it. My wife has observed over and over kip 9,s relentless, has watched as I flopped to unconsiousness,
still she feels and understands, but admits, "I just cant imagine."

Acute cranial pain dysfunction.
ow,ow,ow,ow,ow,ow,ow,ow
jb [smiley=bomb.gif]

Title: Re: What Do you Say!!!!!!
Post by j_erickson85 on Mar 14^th, 2006, 12:25am

Currently it is March 13, 11:18pm.. Three hours ago she did not understand two and a half hours ago she did.......I had my first ever attack at work and was a Kip 9........She walked in and saw me walking down the back hallway crying and cursing. She asked what's wrong. I'm not one for swearing but in the middle of an attack if someone asks the question "are you ok" i snap. i told her i'm having one of those weak ass f***ing headaches.. She watched me as i jumped up and down and rolled my head and do my whole dance recital DURING A KIP 9!!!!. As I went back up to the nurses station there they were looking up clusters on the web. I got an apology from the nurse who gave me so much grief about something so serious...At least she knows what i go through......... I like how you worded this gator
A lot of people can't comprehend past their own experiences. The worst pain that exists is the worst they have ever felt.[b][/b]

Title: Re: What Do you Say!!!!!!
Post by j_erickson85 on Mar 14^th, 2006, 12:25am

on 03/14/06 at 00:25:34, j_erickson85 wrote:

Title: Re: What Do you Say!!!!!!
Post by Gator on Mar 14^th, 2006, 1:02pm

Well, I am sorry you had to have an attack in front of her to get your message across, but I am happy that she has come around and apologized for her insensitivity and remedied her lack of knowledge. Future cluster patients will now get the respect they deserve from her because of this.

Just another small step on the road. Thanks for taking it.

Title: Re: What Do you Say!!!!!!
Post by Charlotte on Mar 14^th, 2006, 1:45pm

What we think is a good day would have a lot of people hiding under the covers.

Gator had a good illustration in reply #9.

I'm still too illiterate to get a quote so go up & read it again for me.

Title: Re: What Do you Say!!!!!!
Post by unsolved1 on Mar 15^th, 2006, 10:17pm

I just heard that $hit today from the visiting nurse. (She had to come and flush my picc line) She said she used to have clusters to. I gave her a graphic, 'over-the-top' description of pain that left her speechless. She admitted that she never had a cluster attack before. LOL !! ::)

UNsolved

Title: Re: What Do you Say!!!!!!
Post by Lizzie2 on Mar 16^th, 2006, 12:24am

When I did my research project for the honors program in nursing school, I met with quite a lot of surprising adversity. The project was designed to create a new curriculum for nursing students and other health care professionals on migraine and other headaches. I had to do a pre and post survey. You wouldn't BELIEVE the comments people wrote on these things. I felt degraded every single night. I cried myself to sleep sometimes because I was so frustrated that people going into a caring profession could be so cruel and heartless. I showed the surveys to a friend, and she was shocked...she said, "And these are our future nurses?" If I'd wanted the easy way out, I would have just shut up and quit talking about my experiences and quit educating them. But I persisted on. I have no idea what kind of impact I made....some people thanked me, but those harsh and mean responses will never ever go away. I've met with mean, nasty comments even from nursing professors! I continue to meet with adversity among nurses on the unit where I work. Yet I'm very sympathetic to them when they tell me they're having a bad headache.

It's so frustrating. It seems people who work in health care are less understanding than anyone else - which is really just mind boggling. Is it just ignorance? I wrote something about it once for an online journal.

Gator - glad you wrote what you said about people being unable to see past their own experiences. This is the whole point behind the JCAHO assessment of pain as the 5th vital sign. So many times, a nurse or doctor would ask a patient what their pain was, and the patient would say it's a 10, and the doc or nurse would say, "no way it can't be....it's really a 5." I still hear things similar to this from time to time in various locations. The JCAHO standard says that the pain is whatever the patient says the pain is.

Sometimes I got frustrated by people losing their minds over a hangnail and coming to the ER about it. But overtime I learned tolerance. These people who came in with what appeared to be 'trivial' things, would say it was a 10. To them, it really was. That's why we can't judge other people's pain. To me, a hangnail might be a 2, but to that person, it's a 10. It's equal to them as a CH is to me...even though we know a CH is much more painful than a hangnail. And ultimately, the world functions better if we respect people for whatever they experience as their worst pain ever. I'm glad for that person with the hangnail that they've never had to experience worse. Yes, I may be annoyed by their whining about it and carrying on, but at the same time, if that's the worst they've ever had happen to them....then carry on!

j_erickson85, good for you for being the better person and walking away when you could have very easily gotten into a fight with the person being so ignorant towards you. That was very smart. We all have to recognize when our own teaching, ranting, and raving isn't going to change the way the other person believes. And I'm sorry that you had to get hit at work for her to believe you. That's not an easy experience... I'm glad she got to see though - for some people, they need something to hit them in the face before they "get it." Hope the nurses are kinder to you now that they know better. I'm still working on that - but I'm also new on the unit, so I figure I can't go too crazy all at once... :)

Hugz,
Carrie :)

Title: Re: What Do you Say!!!!!!
Post by BarbaraD on Mar 16^th, 2006, 4:59pm

My daughter-in-law is a RN (and a good one from all the reports I get). She actually saw me get hit with a Kip-10 right before surgery and almost destroy a pre-op room because the nurse gave me the wrong thingy for the O2 (think I threw it at her while screaming at her to get me a mask). My daughter-in-law was against the wall with this horrified look on her face - I know she was paying attention.... but.... even after this - she still doesn't have a clue at all about CH.

She'll call here and the grandson needs to be taken somewhere - I have a headache right now -- well he needs to be there in 30 minutes (no, are you going to be able to drive - no nothing - just go - we need something!). My son is about as bad and he's seen how bad I get hit - it just doesn't register. He has migraines and I'm supposed to be sympathtic - he hurts!!! Poor baby!

You'd think nurses would be a little more understanding - especially those who've actually SEEN CH first hand, but I guess they don't experience them so what the hell.

Maybe rippin' off an arm isn't such a bad idea after all. Oh, does that hurt? Gee, I hurt like that one time... maybe if you take an aspirin..... ;;D

Hugs BD

Title: Re: What Do you Say!!!!!!
Post by imnotbub on Mar 17^th, 2006, 2:53pm

I don't say anything any more. People want to think they know pain, letem. They don't care about your pain, fuckem. [smiley=finger.gif]

Title: Re: What Do you Say!!!!!!
Post by BMoneeTheMoneeMan on Mar 18^th, 2006, 12:12am

Good posts Gator, made me laugh out loud. Some people should learn about the red hot nail gun routine before opening their mouth.

I totally agree, the word headache makes it sound like a hangover. Granted, pain is felt differently, and it is hard to know even what you dont know.
I bet if you talk to 100 women that have had a baby, most will say it is the most painful natural pain known to humans. But, if you ask 100 clusterheads what is the most painful, most would say CH.
If you talk to my Dad, he says gout is the most painful.

Its all relative. I'll tell you what though, the red hot nail in the eye while unable to do anything to avoid it is a pretty damn good description.

PF wishes
BMonee

Title: Re: What Do you Say!!!!!!
Post by ABarham on Mar 20^th, 2006, 3:21pm

I see Adam in his pain when he is hit. Until you spend some time with it I think it is impossible to understand. He uses the description of a red hot drill in his temple. His boss finally saw him get hit with a K9-10 one night when they were working out of town. He now knows what he means when he tells him he is in pain.

It's kind of like trying to explain hot flashes to someone. The best I came up with was; pre-heat an oven to 350 degrees and stick your head in.

I really don't think it matters what description you use for any kind of pain, until someone experiences it for themselves, there is no way to understand.

Title: Re: What Do you Say!!!!!!
Post by nani on Mar 20^th, 2006, 3:23pm

on 03/20/06 at 15:21:55, ABarham wrote:

It's kind of like trying to explain hot flashes to someone. The best I came up with was; pre-heat an oven to 350 degrees and stick your head in.

For me it's more like...swallow an oven and then preheat it 450. ;)

Title: Re: What Do you Say!!!!!!
Post by erikadb on Apr 17^th, 2006, 12:00am

Hey I totally agree with you! I have both and let me tell you - I'll take a migraine any day of the week over a cluster, how nice it is to just...lay there. I am always wishing I could have nurses, doctors, husbands, experience just ONE CLUSTER headache, and I guarantee a whole new tune would be sung by them!

Title: Re: What Do you Say!!!!!!
Post by superhawk2300 on Apr 24^th, 2006, 12:23am

I work with not one, but two people who know someone "who have you have and they say it isn't that bad".

I rarely get attacks during the day but this last cycle I did get one at work and while I was slowly and quietly grinding my head on my desk a co-worker, who couldn't wait for my attention, call me "rediculous" and stopped out of my office. I got up and stomped to her desk, spun her chair around and ripped into her calling her "selfish", "princess" and other things I cannot remember. 5 minutes later my Relpax kicked in and I came out of my office fine (looks bad I think) but my other coworkers were like 'That was awesome, she needed that for a long time".

As for the pain, I've had many surgeries, the most painful were knee re-conrstructions - they drill holes through your leg bones (with a drill) and put screws the size of my pinky finger through the holes. The heaviest of pain meds are given after a full blown one of these - During my first one I got sick off a bad batch of meds and couldn't stop throwing up, ergo no pain meds in my systems (supposed to not stop taking so they stay built up in system). Doc was on vacation for the 3 day weekend and the on call person "couldn't" call in more nacardics for me. The concentrated pounding pain in my leg was very much like what the back of my eye feels like in what I would call a 7 CH.

I describe as like missing a nail and hitting my thumb full force with a hammer, only hitting the back of my eye and not my thumb and hitting it over and over again with increasing intensity instead of once.

I think some people understand and some won't.

Title: Re: What Do you Say!!!!!!
Post by Jbrigham77 on Apr 24^th, 2006, 7:48pm

I just had to start explaining to people how bad CH really is, my boyfriend has seen me in pain before and he knows this is bad, he freaks out, and wants to help but knows there is nothing he can do, except if I say it's "time to go" he knows we're taking a trip that night. to the ER. My close friends at work have seen me get a CH, and had to leave to the ER, my first attack this yr, my manager has seen it too, so she leaves me alone right now.
I am getting ready to go back to school to finish my RN but luckily I have had pretty good experiences so far in getting relief from the ER staff.
I have learned to explain how I feel it, "just imagine 1000 icepicks being driven into your skull on one side continiously for about 45 min." People generally get this horrified look on their faces and dont say much more after that.

Title: Re: What Do you Say!!!!!!
Post by blue43 on Apr 24^th, 2006, 9:04pm

This is probably too obscure to help, but there's an X-Files episode where this guy has terrible pressure in his head and the only thing that will alleviate it is to keep driving west. Something about the government doing research and how it affected him and everyone who lives in his town...so Mulder is driving, driving, driving, and the guy's in the backseat unable to sit still, beating his head against the window, etc., especially if the car slows or stops. At the end, they're going to save him by jamming a needle into his ear, but before they can, his head explodes.

That's what cluster headaches are like for me. The episode is "Drive," 1998.

Title: Re: What Do you Say!!!!!!
Post by floridian on Apr 24^th, 2006, 10:00pm

Language is the problem. People are hypnotized by words, believing that other people's experience is like their experience, because they 'know' what a headache is - they've had headaches, after all.

I've seen the exact pattern unfold on this board with other medical conditions - people with CH who don't understand anxiety or depression make strange remarks when someone who has those conditions ask if there is a link between CH and anxiety or depression. As if anxiety disorder is just a matter of trying not to worry, or depression is about cheering up!!

Language is the problem.
No one understands me.
Know what I mean??

Title: Re: What Do you Say!!!!!!
Post by kayarr on Apr 24^th, 2006, 11:43pm

Language is the problem.
No one understands me.
Know what I mean??

Yup!!!!! I know!