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        New Message Board Archives >> Jul-Sep 2003 >> how do you explain ch?
        
(Message started by: kellya408 on Jul 13^th, 2003, 12:22am)

Title: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 12:22am

Hi y'all.
Since I've been diagnosed last month, I've referred a few people to this site and "quoted" some of the info from my doctor so they knew what ch was. But I have friends that either won't have time or just won't find the time to read everything/anything. And until people have some idea, the common response seems to have been "oh, so they're like migraines or tension headaches???" (I won't say what runs through my mind when I hear that - or when people think I'm joking that they're called "suicide headaches" and that you sometimes want to punch a wall - with your head or fist). Any suggestions on explaining to friends and family what ch is and what they should do if the beast appears? Odds are, with my family and close friends, they're going to witness it, and since my diagnosis, I haven't really gone anywhere other than work or school , not out with friends or anything. (I've realized it is partly fear of a ch and not knowing what to tell people).
Also, I've opened myself up to dating (the hiatus was unrelated to ch), what do I tell someone I don't know so well? I won't say anything on the first date but for example, someone I've recently met wants to go out on the boat. I kind of have to say something because there'll be no where to hide if it hits.
I'd appreciate any advice!
PF Vibes
Kel

Title: Re: how do you explain ch?
Post by Big_Dan on Jul 13^th, 2003, 12:25am

... well... I told my father that when I was having k10 attacks 4 or 5 times a day during my last bad cycle, I seriously considered putting my 12 gauge to my head...

... he got the message pretty clearly....

... and I don't contemplate that anymore... since I've found my new home... ;D

... as far as warning potential dates... it's hard... my last girlfriend didn't understand till she witnessed me with a k10 one night at about 3:00am... scared the hell out of her...

-Big Dan

Title: Re: how do you explain ch?
Post by Roxy on Jul 13^th, 2003, 12:28am

Kel,

Here is a link to the UK OUCH site. This is a letter written up to give friends, family and colleagues. Print this off and start handing them out.

http://www.ouch-uk.org/ch/note_colleagues_print.html

Good luck,
Tracey

Title: Re: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 12:28am

I pretty much told my grandma that the last time I had one when she wasn't home at the worst point in my cycle. I wouldn't be surprised if she locked up the knives. She's seen them though. I just can't seem to think of what to tell people that haven't seen me or tried to talk to me with them. I haven't seen my best friend since this started in May because I'm scared I'll get one while at her house...

Title: Re: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 12:29am

Thanks Tracey - I just printed it! ;D

Title: Re: how do you explain ch?
Post by Big_Dan on Jul 13^th, 2003, 12:31am

... ah... fear of the beast. Try not to... I hope that it doesn't, but it's more than likely going to hit sometime. You just have to show that sunuvabitch who's running who.... it's a job sometimes.. but you can do it.

... and let me know if the date doen's work out as planned... ;)

... j/k...

-Big Dan

Title: Re: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 12:35am

LOL Big_Dan - I'll let you know

Title: Re: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 12:42am

Tracey - Thank you so much!!! This is great.

Title: Re: how do you explain ch?
Post by Roxy on Jul 13^th, 2003, 12:56am

Thanks Kel, but the real thanks goes to Simon Bower of OUCH (UK). He is the one who wrote it, and is kind enough to let everyone use it.

PFDAN,
Tracey

Title: Re: how do you explain ch?
Post by eyes_afire on Jul 13^th, 2003, 9:13am

Hi Kelly. Here's another link that I prefer. It's a little bit 'clinical' but I believe that it 'carries more weight'. All they have to do is read the first 9 lines:

http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature

I worry about that too, but now-a-days I worry alot less. I only tell people who may need to know... ie I forewarned my supervisor at work as a courtesy (emphasizing that I'm doing them a favor with the warning and that I expect no sympathy and will have none of it). Sometimes I think it can be more detrimental to 'forewarn the general public'. Most people don't have the understanding or even the desire to understand... they are too busy ensuring their security. Such a disclosure disturbs their security and drives people away. Sometimes I think the greater impact comes without warning. After the CH event, then you can hand out the above link. If they still don't understand, then they are either insecure or stoopid.

--- Steve, one of many...

Title: Re: how do you explain ch?
Post by don on Jul 13^th, 2003, 10:36am

This always makes an impression...........

"My headcaches are so bad I have to self inject"

Thats it. People here the injection part and it freaks them out. An injection for a headache? No one has ever heard of that. It imparts the seriousness of the pain.

Title: Mr. Hyde
Post by rumplestiltskin on Jul 13^th, 2003, 12:24pm

Hell...I don't even believe how bad they hurt till I'm in the next one. How can I expect anyone else to relate?

I can't control people, places or events. Accepting that is a full time job that assists me in keeping some perspective. I expect noone to understand.

For those who are likely to share this experience with you. Be honest. Tell them what you are likely to do during the pain....and what, if anything, you prefer them to do. My post in the "rage" thread make it clear that I really don't want or need anything but space.

My simple pat explanation of CH to folks is this:

"Pain afferents from the trigeminovascular system transverse the ophthalmic
division of the trigeminal nerve, taking signals from the cranial vessels
and dura mater. These synapse in the trigeminal nucleus caudalis and then
project to the thalamus (ventroposterior) and lead to activation in cortical
areas, including frontal cortex, insulae, and cingulate cortex, RESULTING IN
PAIN."

Love
den

Title: Re: how do you explain ch?
Post by RevDeFord on Jul 13^th, 2003, 12:49pm

I tell them what the very first doctor told me who diagnosed me. "This is extremely serious, and I don't make my diagnosis lightly. You have what are called "suicide headaches" because as many as 70% of those who have them commit suicide. They are clinically called cluster headaches and are very rare. You need to see a neurologist as soon as possible."

When I tell them they are called suicide headaches and follow that up with the fact that I also get migraines, and I'd rather have the pain of a migraine over a CH anyday, they usually understand.

People who know me know I am a pretty tough character, so if I am complaining about pain, it must be bad. I have an oxygen tank by my desk at work. I had one in a client meeting a couple of months ago and my co-worker took over by saying, "He has these really bad headaches. He'll be back in a bit."

Title: Re: how do you explain ch?
Post by RevDeFord on Jul 13^th, 2003, 12:51pm

Oh, he is also the one that told me that the pain usually exceeds that of childbirth.....that helps them understand a bit too.

Title: Re: how do you explain ch?
Post by jonny on Jul 13^th, 2003, 3:17pm

on 07/13/03 at 12:49:49, RevDeFord wrote:

suicide headaches" because as many as 70% of those who have them commit suicide.

Rev dude, you may want to ajust your findings.

If 70% killed themselves we would not be here.

.................................jonny

Title: Re: how do you explain ch?
Post by kellya408 on Jul 13^th, 2003, 4:07pm

Thanks y'all.
I don't want to tell anyone I don't have to. But even my best friend made the comment, "oh man, that's too bad - I had a migraine once" - and she did it as a ch was leaving. I don't think I ever wanted to scream like I did at that moment - but she doesn't know.

I was so mad at my office mgr when I found out more people were told than those who needed. Now there's someone in the office - who's annoying enough that EVERYTIME she see's me says "how's your head" or has the nerve to say "oh you have a headache?" - and she does it on days I don't have one and am actually feeling pretty good - until she says that!
I just want to yell at them and tell them (people who don't need to know at work) 1) its none of their business, 2) if I have one they'll know it or I won't be there, and 3) I am more than this darn beast and quit asking.
But I don't.
Sorry, didn't mean to vent - I went 48 hours last week without one and I'm frustrated because I started getting them again on Wed. Thx for the advice - and for letting me vent.
PF days and nights to all of you.

Title: Re: how do you explain ch?
Post by RevDeFord on Jul 13^th, 2003, 4:13pm

Those figures are just what I was told at my diagnosis. Even the UK document shared earlier says that more than 50% try. I wonder as many new people as we have finding us day in and day out, how many take their lives before finding us.

Title: Re: how do you explain ch?
Post by jonny on Jul 13^th, 2003, 4:59pm

Nothing against you bro but whoever diagnosed you should unscrew thier head from thier ass...big time!!!!

70% of clusterheads kill them selfs?

Someone ought to kill that Doc and fast!!

......................................jonny

Title: Re: how do you explain ch?
Post by Ted on Jul 13^th, 2003, 5:15pm

on 07/13/03 at 16:13:00, RevDeFord wrote:

Actually, the document says over 50% considered it ("A more sinister name for it is suicide headache - for obvious reasons. More than half of all sufferers have considered this, and, sadly, I know of at least three who have been driven to it in the last eighteen months."). Probably 90 percent of teens have considered it. Doesn't mean they tried it (Was that the UK document you were refering to or was it in the one Bush, et. al. use to claim Iraq was buying yellowcake from Niger?)
50% trying it, in my opinion, is a MUCH too high number. 70%? That surely is a Bush-fact. :-)

Title: Re: how do you explain ch?
Post by don on Jul 13^th, 2003, 5:31pm

I'd be willing to bet 99.99 % of us have "considered it" but that was probably in the throws of pain and frustration.

I personally do not no of one single sufferer who has taken their life soley due to CH.

On the other hand the Rev (with the cool shades) brings up a valid question. How many BEFORE they found us?

Title: Re: how do you explain ch?
Post by don on Jul 13^th, 2003, 5:32pm

I'd be willing to bet 99.99 % of us have "considered it" but that was probably in the throws of pain and frustration. "Considering it" is far from a clinical diagnosis of suicidal.

I personally do not no of one single sufferer who has taken their life soley due to CH.

On the other hand the Rev (with the cool shades) brings up a valid question. How many BEFORE they found us?

Title: Re: how do you explain ch?
Post by RevDeFord on Jul 13^th, 2003, 7:22pm

It might be that because I was a teenager at the time, about 16 or 17 I think, that he was trying to exagerate to get me to realize the seriousness of what these things were. Course, I had had them for 3 or 4 years by then so I knew the pain was bad. I just thought I was going crazy(fueled by my paramedic dad who didn't know what they were and said time and again, "headaches don't just (happen) like that")

So, I think he was trying to get me to realize how serious it was. He was a young doctor too....couldn't have been 30. It was in one of those little "doc in the box" emergency clinics.

Title: Re: how do you explain ch?
Post by stevegeebe on Jul 13^th, 2003, 7:55pm

My definition: Googleplex ice cream headache with attitude.

Of the three people I personally know (knew) with our affliction, one successfully shot himself in his head and the other has not been in cycle for five years.

33.3%?

Steve G

Title: Re: how do you explain ch?
Post by Gofishgriff on Jul 14^th, 2003, 1:01pm

I've tried several ways to describe the pain associated with CH. I get the best reactions, or signs of comprehension, when I say;

"Have you ever had a brain freeze when drinking a slurpee? If so, double that pain and let it stay with you for two hours." :o

Title: Re: how do you explain ch?
Post by oringkid on Jul 14^th, 2003, 7:26pm

I usually tell them that it is like giving birth through your eye. (The mothers can usually relate)

I also will pull the "suicide headache" card for the non-believers... but I think the "statistics" are very wrong about the percentage of us that commit or even try to commit suicide due to this affliction.

I have attempted... but not due to CH....In my worst attack, I didn't contemplate suicide, but did beg for relief or death. I think it is that "give me relief or give me death" thing that has earned CH the "suicide headache" appellation.

Rev, I wonder what reason your doc had for telling/scaring you with that number was.... if it was just to get the seriousness of the thing across to you, I wouldn't think that telling you to expect to want to commit suicide would be a good thing for a doctor to do to a patient..... It seems to me, to be a bit self serving and definitely detrimental to the patients mental well being..... But, that is the past.... hopefully doctors aren't quite as into "drama" now.

Sherry