Greetings CH Team,
 I understand that people who are not educated with our condition mean well, and want to help us. But has anyone else wanted to choke someone for making the dumbest remarks every heard to us about how to handle our condition>? I figured I would vent on the message board so I can have more patience to educate and teach understanding about Clusters in the real world.

True comment from a fellow grad student to me.

Her: "Where have you been? WHy did you miss class?"
Me: "I suffer from Cluster Headaches and am going through a bad cycle. It's all good though."
Her: "Oh.. You want to talk about bad headaches. I ...get bad headaches.!!! (she laughed at me at this point). Mine are so bad that I take exedrine Migrain. Not just two .. but three pills sometimes!"
(Stunned silence)
Me: .....    "You know what? Your right.. that is bad. Poor girl"
and i walked away...

   sigh...      it is funny now. But WOW, I wanted to go Homer Simpson on her!  (can I blame the Prednisone?)

I am curious to hear any similar comments...  they always crack me u, AFTER... the fact... lol

 Hang in there people!

   William  :D

"It's all in your head."

"I had one of those once."

Awesome...

I just have a nice cupa tea & a little lay down NO PROBS :P

I love my wife, and she's a pretty good supporter most of the time, and I know I've said some stupid stuff over the years, but she's had a few doozies in this department....

"Will this TV, being on, bother you?"
"Those tanks make it seem like 'old people' live here - can we not hide them somewhere?"
"Maybe if you just didn't think about them as much as you do, you might be less inclined for them to come on."

from my Mom :  " oooh i get headaches too sometimes.... take a st. joesph baby aspirin everyday, I never get sick anymore"    

 you know those orange chewable things!!!!!!!!  I didn't even know they made those things anymore- she probably has them leftover from when i was a kid

Well, my aunt said that I'm "imagining" all of my hits and my mother suggested that I should have donuts for "treatment". ::)
This world has lost two medical experts in them... ;D ;D ;D

Sanna

a co-worker once told me, Oh, I have migraines too, just take an Advil and drink a coke, it works for me!!  

BARF... [smiley=hurl.gif]

I just wanted to smack her!  [smiley=hewey.gif]

they can't help it though, they TRULY have no idea... ::)

The guy from Apria that delivers my O2 told me "I had one of those once. I got in the back of the truck and tried the O2."

This one is directly from Google Health:

"Cluster headaches are a fairly common form of chronic, recurrent headache."

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The site also has a list of meds that is good for a chuckle...

I also have heard the "Maybe if you didn't think about them so much you wouldn't get them!"

Got to love it! :D

I have two good comments in two days for this thread.

Yesterday I got: "Have you tried going to a specialist?"

Today: "If you soak your feet in hot water, like in the tub...that will do the trick."

Sigh,  they just do not understand...

 Thank God for everyone in the CH family that does understand!

You know..  one of these days..  one of these remedies is going to work.. lol....and I shall apologies!

"Have you ever tried (insert any alternative therapy like a health stone, herbals etc), they helped (insert name) to get rid of his/her headaches."

"You have been awfully busy lately, no wonder you get headaches."

"It's all that coffee you start your day with."

"All that pacing can't do any good. With a headache yuo should lie down."

"Have you been worrying?"

"I hate having a headache too."

They all mean well, ya gotta give em that, but it'll only make us homicidal even more...LOL!

"A friend of mine got rid of his headaches with his chiropractor, you should try that."

This is Ironic, because since the divorce, he too is now a supposed clusterhead.  But before this, and before I was correctly Dx, and after my first imitrex injection, he said to the babysitter after the trip to the doctor.

"She was jumping around like a whimp.  Jeeze it's just a headache."

Just this week in Danish class on break I was pacing the hallway and chugging coffee when a lady told me I should have an enema and that would clear out the problem.
I told her my headache was at the other end. She went away confused. I wonder why. ::)

Sophia wrote on Jun 11^th, 2008 at 10:35am:

Just this week in Danish class on break I was pacing the hallway and chugging coffee when a lady told me I should have an enema and that would clear out the problem. I told her my headache was at the other end. She went away confused. I wonder why. ::)

[smiley=headbanger.gif] [smiley=headbanger.gif] [smiley=headbanger.gif]
One could guess that Lady does most of her talking from the other end; the sort of person you would nickname Moses cos every time they open thier mouth the Bull rushes out.

Eyestrain.  

It was a diagnosis from my optometrist, when I was a kid.

He's dead now.  I didn't have anything to do with that, by the way.

Best,

George  

When I started getting cluster headaches, my EX was pregnant with our first child.  She said it was psychosomatic because I was jealous of her pregnancy.

Sheyeah Right!

:-X

Ray

This wouldn't be funny but I was looking the neurologist in his face when he told me,"Take an aspirin and drink a coke". [smiley=bomb.gif]
I can laugh now.
thebb

"Maybe if you just didn't think about them as much as you do, you might be less inclined for them to come on."
- I hate that one, but my #1 came from my father. Ready???

"Just bite on a bullet and get over it"  :o

I told him I was about to eat a bullet   >:(

Glad you didnt eat that bullet but I have sure wanted to plant some buckshot in a few behinds over stuff like that. I was told today by a *friend* that I was addicted to pain meds and that was why I had so many headaches. Uh gee if I was addicted I wouldnt have been able to stop taking them 48 days ago. And twice a week does not a dope fiend make. Where are these people coming from?  :-?

When I went to my doctor to ask for O2 and verapamil - I saw a new lady doctor - she refused the Verap and O2 - but said - 'I see from your notes that you are a smoker - I'm sure giving up smokoing would help'

My hands seemed to take on a life of their own - I could feel them stretching out for her throat -- I wanted to wipe that supercilious smile of her face - I managed to control myself. I would never wish a CH on anybody!! - well maybe just one doctor - sorry God I didn't mean it.

regards and PF days,

Melvyn

I've often wondered why CH was more deserving of the nickname Suicide Headaches, when in my experience homicidal thoughts are more common.
:P

Chappy wrote on Jun 22^nd, 2008 at 1:08am:

I've often wondered why CH was more deserving of the nickname Suicide Headaches, when in my experience homicidal thoughts are more common.

I'll drink with you, Chappy.  Name your poison and it's my shout.

Chappy - That bit about the homicidal vs. suicidal is classic!  Dead on!  haha

Best for me was when I was at a headache specialist (whom I truly hold in the highest regard), and I think he thought I was describing maybe ice pick headaches (those very brief stabs that people who have migraine commonly get).  I had described to him my 2 hours of sleep a night for a few months, the attacks, severity, etc, and he said, "There is no point in trying to treat or abort those headaches."

Now, it's funny.  At the time, I thought I'd died and gone to hell.  haha

Hugz,
Carrie :)

I got a new one.... You just want attention!!! No friggin way I want to be left alone with these.
And yesterdays was.... I dont see why your headaches interfere with your studies. Take and aspirin and then you can study. I bit my tounge and walked away to go give myself an Imitrex injection. I think next time I will do it in class. GRRRR!!!!
Sophia
I gotta laugh, it hurts too much to cry. 8-) 8-)

The best one came from my dearly departed mother, a former hairdresser.  

My hair was quite long at the time.  She told me that if I cut my hair, and removed all that weight from my head, and QUIT going to those silly nudist places, my headaches would stop.

So the "cure" is short hair, and keeping your clothes on ... (Well, I guess I will never be cured, then!)

Thanks Mom!

Chuck

That story from your mom still makes me laugh Chuck.

My mominlaw was a registered nurse and said that ch is just another headache and no needs for either sick leave or medication,ans she did believed that until her dying day.

Now i am using her example of attitude in some of my speeches over here.Specially when its doctors and nurses present in the auditorium


Svenn

I've heard this one more than a few times...it actually helps since it induces what is the "supposed "cause..

Latest, at a party for a resigning colleague, the commentor, drunk on her lips and so assured I refrained from comment and went to the chip bar..."Sthressh, yup, that's why you get these head thingies, too mush shtressh..."

My husband laughS and makes fun of the term CH. ....But the usual line he gives is " It's a made up illness". Oh Oh...and he says "Those people online ( here at CH) are bullshitting.

Great support I get! here's something for you ..."hon"
[smiley=bash.gif]

Mom said " You need to get a grip on these headaches"  
WTF is that suppose to mean.  

I had to convince my wife's friend that she did not have clusterheadaches and she got all mad at me.  She should be happy.

I thinks its george with the picture of that eye apparatus when a doctor told him it was an eye problem.  George ...if thats you, please post that again.  I laughed my ass off!!!

"I had a clusterheadache once"  I just let that one go...........not gonna argue.

About three years ago I was in the control room at work with 6 other guys, two whom I knew very well, two that i knew fairly well, and two that were new employees and didnt know at all. I was explaining to one of the guys that I knew very well about CH, and one of the new guys says," oh i get those too".  I said "really"? " ever been to the doctor about them?" and he says,"naw". I said, " ever see a neurologist"? and he says, "humph, hell no". and I said, ( in a slightly, just slightly mind you, IRATE tone,  " Ever been standing in your darkened living room at three A.M. holding a loaded .357 magnum at your head with 2.99 pounds of pressure on a trigger with a 3.00 pound trigger-pull, and the only reason you didnt flinch and do the deed was because your wife was crying her eyes out and begging,"PLEASE,PLEASE for Gods sake dont do it"????????     Well,, after that fifteen seconds of VERY uncomfortable and COMPLETE  silence in the room, the guy says," Uhh, maybe I dont have that after all".  When me and the other guys look back on that, we crack up and laugh about it. I still dont really care for that guy though!!!!    Tuck

After spending a year in 2003-04 getting my daughter, Lisa's asthma under control she had 2 years of a comfortable life with minimal asthma then the clusters set it. Her asthma/allergy doctor recently said "I don't know much about cluster headaches but is it possible that now that the asthma is under control she may have created this rare condition??? He even saw an attack in his office last summer from the beginning to the end. I don't think he's reading the links I've told him to!

Charlotte

it has been a about 4 years since i've visited this site... but the first post belongs to humor....its good to be back!

i live in a small southeast alaskan island town, and i don't get to chat with any other clusterheads but here.  so, the non-ch chatter in my life is quite funny to me and my husband.

the most often said is:   "do they know what is causing it yet?"

i had to go to the ER the on sunday morning to get an imitrex injection, because they didn't have anymore refills at the pharmacy on friday and i had to wait till monday for them to order and then tuesday for them to come on the airlines (gee whiz)! but, the nurses at the end of hall took their merry time to come find out why i am making such a fuss. they thought i was a drunk person... thanks girls.

angela

Now that enough of my friends know about CH, particularly some running buddies, they keep an eye on me after running. If I get hit it becomes like that "Bud" commercial when they see my eye all f*&$ed up and they say, "Oh, dude".

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The first time to the Chiropractor office.  I asked the doc, "have you even heard of CH"?  She said "yes, but wasn't that familiar with them".

She said "the treatments could possibly heal it".  That one moment of inspiration only lasted about 1 hour.  After they do that neck snap at the end, I felt worse.  What bunch of crap!

Chuck,

My late great mum used to say that: it's coz of you sporting your hair long! Love her for so many reasons, but she was wrong on this one.

Speaking to a woman recently got me remembering this one, from the good old nineties:
Why, you're wearing all those piercings and earrings... they must be causing your headaches, as they interfere with your ''balance kinda thingies'' (or something  ;D).

Yeah that's it. I've gotten rid of most of my piercings (except for a nosering and a sh-tload of earrings ), but ya know what? Still get them f-ckers.
So much for that acupunctural new age blah blah.

Regards, Pascal.

ClusterChuck wrote on Aug 2^nd, 2008 at 7:41am:

The best one came from my dearly departed mother, a former hairdresser.   My hair was quite long at the time.  She told me that if I cut my hair, and removed all that weight from my head, and QUIT going to those silly nudist places, my headaches would stop. So the "cure" is short hair, and keeping your clothes on ... (Well, I guess I will never be cured, then!) Thanks Mom! Chuck

I had a NEUROLOGIST tell me the 'haircut' solution. It was for INCREASED INTRACRANIAL PRESSURE. He was convinced that if I just had my hair cut? I'd feel OH SO MUCH BETTER. And my migraines and seizures would go away. We were all sitting there considering injuring the man. He already had tried to convince the other doctors to hospitalize me in the mental ward and failed.

Other incredibly stupid thing from a neurologist "Just go to the ER every day if you have to until we can see you again. We're not going to prescribe you anything and your primary care physician has to request the oxygen orders from us."
"They already did."
"Have them request it again."

1 week later my Mom calls again.

"One ER is refusing to treat my daughter. What do I do? She wants to kill herself during these headaches!"
"Go to another one, oh, and request their neurologist on call."
"So, if we come to YOUR hospital, which is 2 hours away, to the ER, and request the neurologist on call, they will bring one of the neurology departments doctors to us?"
"UM UM UM, that's up to the descretion of the doctor who sees her in the ER."

He was lucky I didn't see him when I had to go in, because I was going to grab him by the balls and inform him "Your pain ends when mine does!" >_>;

Neighbor once said "Well I sometimes see you up at all hours of the night ,paceing around, like you don't know where you're going or what you 're doing; why don't you go to bed and get your rest like everyone else..then they will probably stop.  I couldn't help but think "whata f'in retard".....and apparently a VERY NOSEY RETARD at that....lol

Boss said the pollen count is really up there today you must have a sinus problem would make your ""eye"" water too. NO I dont. The end.

Regarding "Homicidal Headaches" Oh thats cluster headaches.... My boyfriend keeps shoving opiates down my throat (he waits for a scream and pokes them in so far I either swallow them or choke. What a guy I am going to hide the tablets today. I know he means well but I may kill him. Anyway a 19 year old at danish class said to stop drinking coffee and my headaches would go away. GRRRRRR!!!!! I am 20 years older than her, 15 kilos heavier and one he** of a lot meaner and she was lucky I didnt do more than tell her no thanks. Good God no coffee and cluster headaches!!!!! A fate worse than death! Sophia

My fav is it is all in your head lol
another one i love is i hate having a headache just try to sleep it helps me

and yet another from my mother Your are over reacting watch you dont get dependant on that o2 try some painkillers.

To be fair though since then my mother has read up on it and lost a nights sleep worring although she never spoke to me about it she spoke to my sister, me and my mother are to much alike so we find it hard to show eachother our feelings so i will just say it here
"I Love You Mum"

Regards
Brian

I've gotten a lot of the "Oh, I sometimes get those, I have to lie down in a dark room until it goes away"...I try to politely explain the difference between clusters and migraines, but it rarely works.

What's more interesting are the comments from the few people at work who've seen me pacing around with an actual headache...From the girl across the hall, when I had a full-blown kip 8 complete with the crazy eye:

"OH MY GOD! Are you having a stroke?!?!"

Chappy wrote on Jun 22^nd, 2008 at 1:08am:

I've often wondered why CH was more deserving of the nickname Suicide Headaches, when in my experience homicidal thoughts are more common. :P

Absolutely true.  I hate well-meaning, ignorant pests during my hits. 

Personally, I hate the migraine sufferers trying to relate:  "You should really stop pacing, it makes migraines worse.  Lie down, and sleep it off".

"Wow, thanks! all the doctor's I've seen only tried smashing my head with a hammer.  I'll try it next time!"

I'd give anything to be able to 'sleep it off'  I hate the sleep it off comment!!  Like I'd choose to remain concious during the most painful moments in my life if it was a choice.

"Oh I get Migraines Too!" or "My 'fill in the blank gets migraines too!"  or "I've had those before."
::) ::) ::) ::) ::) ::) ::)

Given the number of times I've heard this response when  specifically stating CH, not just H or MH, and the number of times I've tried to explain it and people JUST DON'T F-ing get it, I've Given up explaining it at all.

P.S. I was going to edit my post to add the following but the option went poof (?)

P.P.S.
Another one once said to me "Oh you just need to learn to control it." 

Here's what I wanted to reply:
Come here let me stick a fork in your eye and watch you control that pain!!!   >:(

For me, it isn't just what they say, it's what they do.

First..."Why is your eye doing that? Open it!"

Second: "Okay, we're going to FORCE your eye open. Now look at the light."

THIS COMES FROM DOCTORS. ARRRRRRRRRRRRRRRRRRGHHHHHHHHHHLDKJSDHSAFJHSAHJAKHGHJSFFHKH

It doesn't matter if I'm at the ER for another chronic condition or a severe allergic reaction gone wrong. They fixate on my fucking eye.

I had one godforsaken neuro-opth in Houston FORCE it open then tell me to read a fucking EYE CHART.

WHAT.THE.FUCK???

I know Brew said once it was a test to see if I'm a homocidal maniac. I pass the test, but my Mother is to the point she's about to start snapping at people who do this to me. The stupidity dumbfounds us.

'You suffer from cluster headaches? Yes I'm familiar with those. They're easily manageable. Just get on with your life, that's the best medication.' Coming from a doctor!  :o Now what creep gave him his medical license?

I always run into a woman from our office who wants to tell me about her daughter's migraines and what works for her when I am on the way to the bathroom to get tissues.  Meanwhile, I have tears and snot running down the left side of my face...seriously does this look anything like your daughter's migraine?  Leave me alone, I am busy being tortured!

From my Father, back when I still lived with him:
"If you drink your orange juice every day, you'll never get ill or get headaches"
"Just take a couple aspirin - that'll knock it out"
"Just drink a few shots of whiskey"
"You work too much - if you'd cut down your hours, you wouldn't get headaches"
"It's all of that loud music you listen to"

From my Boss, whom I respect and envy for his hearty constitution (I've known him for five years and he's only been sick twice - lucky guy):
"Just tough it out"
"Don't be such a sissy"
"Are you gonna have a headache again tonight?"
(after I went to the hospital for not being able to breathe - got an injection to loosen my lungs) - "So, every time you have a headache, you need to go to the hospital and get a shot?"

I can top all of these, picture this:

I'm on the sofa slamming my head against my knee and attempting to crush my head with my hands

My dad walks in "Tom, you've got a science exam tomorrow, you're going to have to go through the syllabus with me now."

I'm there Kip 7 frankly yelling horrific abuse as he continued to sit there and explain how transformers worked.

Granted this was before a diagnosis but still.

Six or seven years ago, before I had seen a neurologist, and during a period when I didn't have insurance, I visited a clinic (Care-Now or similar) and explained that I had CH and needed Imitrex injections.  The doctor didn't know what cluster headaches were and drilled me for 15 minutes about the pain.  Finally, he said, "Why don't you just come out and tell me what pain meds you're here for?"  I ended up screaming at the doctor and explaining to him that pain meds wouldn't even do me any good and that I needed Imitrex injections, nothing else.  I told him I'd be happy to wait while he googled cluster headaches and learned what they were.  He finally wrote me the prescription for imitrex.  What an idiot.

I still get the occasional "Have you tried ibuprofen?" from people who are well aware of my condition.  It's amazing how oblivious people can be.  Why would I inject myself with incredibly expensive medicine if I could just take Ibuprofen?  I was asked that question last weekend by one of my good friends.  I'm so tired of explaining it that I usually let it slide by, but my husband won't.  He paints such a gruesome picture of CH that people never look at me the same again. ;)

my husband started getting clusters about 2 and a half yrs ago and that first week before we knew what they were we were in the er about 5 times and the stupid doc on duty actually told my husband " no more gum chewing for a couple of weeks and that should take care of the headache"!

Oh, man, that's worse than the ibuprofen.