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People in sociaty need to be more educated on ch (Read 3492 times)

kaza

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People in sociaty need to be more educated on ch
Sep 23^rd, 2011 at 5:48pm

The problem i had was that i was miss diagnosed for over 20yrs doctors putting it down to migraines when clearly they weren't.When i basically diagnosed myself 2yrs ago i felt a relief to finally know what i was suffering from but if u mention CH to anyone, they look at you weird and when you explain what they are and how bad they affect you and your life they think you are making it out to be more than it is, I'm not saying that people are ignorant just that they don't understand the severity of pain we go through and think there should be a lot more information publicly so everyone has and idea of this illness, disease what ever it is. If i'm talking out of term please let me know your experiences on this as i'm not giving up without a fight to make this Beast public to everyone.

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: People in sociaty need to be more educated on ch Reply #1 - Sep 23^rd, 2011 at 6:19pm Nobody gives a shit and why should they? Potter
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Racer1_NC CH.com Moderator CH.com Alumnus Offline "Well, let's go see." Posts: 4417 Lewisville, NC Gender:	Re: People in sociaty need to be more educated on ch Reply #2 - Sep 23^rd, 2011 at 7:50pm Our mission should be to make them "give a shit".
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: People in sociaty need to be more educated on ch Reply #3 - Sep 23^rd, 2011 at 7:54pm Pretty hard to convince someone that my pain is worse than their pain. Potter
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Jimi

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Re: People in sociaty need to be more educated on ch
Reply #4 - Sep 23^rd, 2011 at 10:28pm

I have never tried to convince anyone that my pain was worse than theirs. But I guess that I am more fortunate then you Potter, because I am surrounded by many people who love me and they DO give a shit.

They don't understand how bad it is but they understand that I am hurting and they care about that.

To Kaza........if you feel the need to make them understand, print out a copy of what clusterheads are and give it to them or send them a link of someone having an attack. There are a few on youtube.

BTW welcome to the board.

I am convinced that life is 10% what happens to me and 90% how I react to it.

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ttnolan

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Re: People in sociaty need to be more educated on ch
Reply #5 - Sep 24^th, 2011 at 12:10am

I will comment on this...
As I am getting older and more and more people I meet are suffering from rare and not well understood diseases I have found several truths.
1) The "average" person is too busy to become informed or involved with every ailment out there.
2) Doctors are overworked and overwhelmed with the fast paced 15 minute office visits leaving them to sort things out in their own time, if they can even get a handle on it... leaving them also underpaid these days. Spells burn out and burnout spells indifference.
3) Everything is driven by money. You will get no studies, no pharmaceuticals, no help, if you are a small group of a few thousand. There is simply no interest to invest the resources. If you notice... all of our pharmaceuticals are from migraine research, or pulled from treatments for other conditions.
** This is sad but true... that is why we have this site and the sister site clusterbusters.com! We have to take this into our own hands and pull miracles out of our own experiences/experimentation. In general, Doctors know only what little was concluded by a few short studies done in a span of many years. Only recently has interest in CH increased in the research community and I think it is us who have gotten them excited about it. Organized instant feedback is what excites them... and that is us! Whether we find things by accident, or through experimentation, or through research find things that make sense and then experiment... we all have to depend on each other to keep this site exciting for researchers. We are a driving force.
Negative comments have no place here.

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jon019

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Re: People in sociaty need to be more educated on ch
Reply #6 - Sep 24^th, 2011 at 1:52am

Welcome kaza....glad you're here...sorry you need to be here...but, you are home!

George has said many a time...and way better than I can...that unless you experience ch, you will NEVER understand.

I used to try...no more. It is enough for me that the people who I know and love...and who know and love me..understand that jon has this awful, puzzling, unfathomable affliction. I get all the love and support I need....even though they understand not a millionth of what it means to be a clusterhead....

...and tt...well said....

Best,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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kaza

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Re: People in sociaty need to be more educated on ch
Reply #7 - Sep 24^th, 2011 at 5:05am

Hi and Ty for all your comments and opinions people with other ailments and conditions seem to appear on TV and widely shown like people with tourettes sleep apnea these people cant help shouting out or falling sleep suddenly but because of the documentaries on these subjects people are slowly beginning to understand what its like for the sufferer.People don't give a shit because they don't see us going through the pain and having our lives disrupted to the point of suicide, no other pain in the world apart from cancer and other serious illness can drive you to the very point of taking your own life.I have tried to tell people to either google it or go on you tube but they never do, but millions of people around the world watch TV especially documentaries we need to make this widely known and make a point of getting it public to everyone. Wouldnt you think its worth it even if we could edcucate just a few we could make a difference to the way people react ?

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Guiseppi

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Re: People in sociaty need to be more educated on ch
Reply #8 - Sep 24^th, 2011 at 5:13am

Welcome to the board kaza, I find the people who know and love me are worth educating. They care about me and take the time to understand what I'm going through.

The people I work with, I gave up getting them to understand the pain, but rather was satisfied with getting them to "accept" that when i was getting hit I was disabled.

Part of what we do with CH and OUCH is attempt to educate the medical community, to reduce the years and years of pain many go through to get diagnosed and treated. We clearly have a long way to go.

Hang out here, try and make a convention or a meet and greet sometime. We get the pain, you'll never have to explain a CH attack to us, and we "give a shit!

"

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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deltadarlin

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Re: People in sociaty need to be more educated on ch
Reply #9 - Sep 24^th, 2011 at 11:57am

kaza wrote on Sep 24^th, 2011 at 5:05am:

People don't give a shit because they don't see us going through the pain and having our lives disrupted to the point of suicide, no other pain in the world apart from cancer and other serious illness can drive you to the very point of taking your own life.I have tried to tell people to either google it or go on you tube but they never do, but millions of people around the world watch TV especially documentaries we need to make this widely known and make a point of getting it public to everyone.

The bolded part is the biggest issue out there. If you can't touch it, see it, feel it, hear it, smell it.......it doesn't exist.

We had this big debate in Atlanta about letting people see themselves getting hit. I realize that when you are getting hit that you don't want to be a *spectacle*, BUT it is the quickest and surest way to get people to understand.

I'm not a ch'er (although I am president of O.U.C.H.

), but my husband is. Years ago when he was having a real bad time, he got hit while he was at work (most times, he could hit the O2 and get back to work). His boss had to drive his truck home and one of the clerks brought him home. From that point on, everyone who saw him had an inkling of what he was going through and it changed them in a profound way (for the better). Suzy ( the one who drove him home) still talks about it to this day and that's been over 15 years ago. Our friends who saw him get hit *understood* and would do whatever they could to help. The knew how bad it was and if he had to leave suddenly or started his dance, they knew why and were as supportive of him as anyone could be.

Jumps down off soapbox.

« Last Edit: Sep 24^th, 2011 at 12:04pm by deltadarlin »

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Mike NZ

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Re: People in sociaty need to be more educated on ch
Reply #10 - Sep 24^th, 2011 at 6:16pm

A work colleague saw me just after a K5 and he seems to get an idea of what effect CHs can have, especially as I explained that a K5 is mild (in CH terms).

And ask yourself, before you had CHs do you think you'd truly understand the pain of a CH, never mind something like a k10? I know I wouldn't have.

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ttnolan

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Re: People in sociaty need to be more educated on ch
Reply #11 - Sep 24^th, 2011 at 7:13pm

I did see a documentary once, a long time ago, I think in the late 80's early 90's. My surprise was that they actually had footage of someone in full attack (looked like a K10). He was pacing, hopping, flopping, screaming, banging head against stuff etc.
I never saw or heard anything on TV since. I think I will try to find this show... the first step to getting it aired again. Anyone else seen something like this?
I think the problem is we are private people, intelligent, and with lots of workarounds to keep us "looking normal". Not too many of us want to be filmed with a K10... most of us are not willing to let it get to a K10 before aborting with something. I have often thought of having someone film me after not aborting and letting it develop into a full blown K10. Ouch! Thought it would help the people I have to deal with understand... Just have never done it.
And loose it completely in public... you will have people calling 911... a big messy show... and expensive.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: People in sociaty need to be more educated on ch Reply #12 - Sep 24^th, 2011 at 9:10pm The problem is that we're not Jerry kids. Most of them don't stand a chance past their early 20's.
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ttnolan

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Re: People in sociaty need to be more educated on ch
Reply #13 - Sep 24^th, 2011 at 10:10pm

Kaza,
There is a lot of frustration associated with this topic, thus the responses. Frustration can be a bitter pill. Try to build a nest of comfort around you with the people you love. If you have the energy, you might be interested in a site Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

they seem to be more active in bringing this to the world. This is more a place for help/support dealing with it. To help you communicate there is the "Letter to Employers & Colleagues" at the top of the "Getting to Know Ya" section, and a short documentary "Clusterheads" on YouTube. Couldn't find a trace of the documentary I remember seeing.

« Last Edit: Sep 24^th, 2011 at 10:26pm by ttnolan »

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Linda_Howell

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Re: People in sociaty need to be more educated on ch
Reply #14 - Sep 24^th, 2011 at 10:34pm

Kasza,

The title of your thread..People in society need to be more educated on CH...Who exactly in society are you referring to?

If it is doctors, researchers, scientists, pharmacies, etc. then you have to understand all the politics and money behind what you are saying. CH is a rare condition affecting such a small percentage of the human population. If this were MS, which is a KNOWN disease, or Cancer, or Diabetes or even Migraines, scientists and pharaceutical companies would be chomping at the bit. Why? because there was money in it.

CH isn't even on their radar. The drugs we use, are drugs that we've piggy-backed off Migraine sufferers. We thank them for that, but..

Now, if you're simply talking about the general public knowing about CH..well Potter has a point. Nobody gives a shit. Why would they? Not until you suffer or a family member suffers would you even give a thought to all the miriad diseases, conditions that affect humans. Most especially those that are rare.

Here is the last point which everyone seems to focus on in this thread. How to make others understand this pain.

Stop right there.

No one who doesn't suffer this pain can possibly understand its intensity, it's agony. Why try to explain it? What would it serve???? If you have a supporter who will stick by you, bring you ice packs, make sure your 02 tanks have been refilled, your meds are at the ready, will run interferance for you in public when you get hit...then you are ahead of the game.

OUCH and this site right here, has had several Doctors, Neurologists on our side for the last 11 yrs. Dr. Goadsby our most imminent physician has said...if YOU don't do anything..nothing will get done with the medical community.

THAT is why we have OUCH

Hurt people.....hurt people. Think about it.

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AubanBird

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Re: People in sociaty need to be more educated on ch
Reply #15 - Sep 25^th, 2011 at 5:25am

Linda_Howell wrote on Sep 24^th, 2011 at 10:34pm:

Kasza,

Here is the last point which everyone seems to focus on in this thread. How to make others understand this pain.

Stop right there.

No one who doesn't suffer this pain can possibly understand its intensity, it's agony. Why try to explain it? What would it serve????

therein lies our dilemma. we will never be able to get them to understand what it feels like. the closest anyone has come up with so far is brain freeze, because its kinda sorta not really like CH but its closer than a migraine... all this makes it difficult to make anyone care since we cannot even effectively give them something to relate to. the best i can come up with is a few million Scovilles squirted directly in the eye. unless there are a lot of other people having accidents while making large amounts of chilli at home, i doubt most people could relate to even that mild(relatively) experience of pain. it wouldnt help me out if anyone understood anyway. if my chain of command knew how much pain i suffer they would probably label me a suicide risk and take my rifle and my fire team from me. and since i don't like pity either, i always downplay the pain.

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wimsey1

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Re: People in sociaty need to be more educated on ch
Reply #16 - Sep 26^th, 2011 at 8:49am

I don't think it is a simple matter of frustration, although it is frustrating to try and explain these things. It is because all pain is personal and relative to my own experience. In other words, it is my pain that sets the standard for understanding all pain. When we try to explain the measure of a CH, it is not surprising to hear in response, "yeah, but you should feel the pain I'm in when this leg cramps." Leg cramps do not compare to CHs, but we know that because we've had both. The guy with nothing more than cramps only has a mild inconvenience against which to compare.

I'm waiting for the time when some Hollywood big-name tangles with the beast and decides to make it a personal mission to garner research and support. In the meantime, I am enormously grateful for those neuros and docs who even bother with us. I know they hardly make their income treating us but somehow manage to be interested or compassionate enough to take the time and "give a shit." Just my thoughts on this most delicate and complicated subject. Blessings. lance

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AubanBird CH.com Old Timer Offline I Love CH.com! Posts: 250 everywhere... Gender:	Re: People in sociaty need to be more educated on ch Reply #17 - Sep 26^th, 2011 at 10:21am well, if i ever become a famous writer, ill be sure to write a novel with a CH sufferer as the protagonist. maybe someday somebody would make a movie out of it. it would have to be a damn good book...
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: People in sociaty need to be more educated on ch Reply #18 - Sep 26^th, 2011 at 4:36pm Quote: it would have to be a damn good book... That's never stopped Hollywood before.
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ttnolan CH.com Veteran Offline beats me Posts: 247 Scotts Valley, CA Gender:	Re: People in sociaty need to be more educated on ch Reply #19 - Sep 26^th, 2011 at 6:20pm Amen Brew!
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: People in sociaty need to be more educated on ch Reply #20 - Sep 26^th, 2011 at 8:02pm G'day Kaza and welcome. Just to back up your thoughts on this matter, go to the CH Specific board, page 26, and look at a thread called "Dopiest responses to CH". It'll prove you were right all along.
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Re: People in sociaty need to be more educated on ch
Reply #21 - Sep 27^th, 2011 at 10:33am

I would never want anyone to even try to imagine the pain of CH and if public education is needed it would be better to slant on the side of informing those who suffer from CH and still don’t know what’s wrong with them. At least this site does have any number of aborts and preventives there are worse problems out there that kill people some just as rare as CH and those people will die. If there is only so much money for research and I had to choose where it went I would have to choose the terminal disease. There are also problems that don’t cause physical pain that can be just as crippling and misunderstood as CH, if someone tells you they have tinnitus you just think they have a ringing in the ears. No big deal right - not always I have a sibling that is losing her whole life to a rare form of tinnitus that is her own voice over and over again with anything she even thinks. If you had to have every word you heard or thought or read repeat itself over and over before you could get to the next word – well I can’t imagine the mental pain of that even though I’m watching her lose her entire life to this and there is nothing medical science can do. For myself I’d rather have CH then her problem even if she has no physical pain.

No matter how great your triumphs or how tragic your defeats, one Billion Chinese couldn't care less.

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