Met with some friends Monday morning, they know I've been in cycle. Mentioned thay I ended up in the ER twice on Saturday and they asked why. Another friend insists that there must be something wrong to be having so many headaches- you think? Dreading going to y GP again cause I'm pretty sure she's going to want to put me on anti -depressants. You want me to not be so depressed- get rid of the dang headaches! Sorry just had to vent.

i gave up years ago on explaining it to people. i just say "i'll be back in a minute" if they don't understand, piss on em ;D

well maybe i should have said this. any headache issues i have i don't share with my friends very much. they all know my story and if they don't understand it doesn't bother me. if i have CH issues i come here. to be quite honest im probably closer friends with the people here than i am with people i went to highschool with.

My all time favorite is “you mean you are still having those headaches?” insert look of shock on their face here.  “Wow that has to suck” you think! I think people at least ones close to us prefer not to think of us in pain and it is just easier for them to forget we even have them but it is a little bit of a pisser when they pop off like that or respond like it is just a normal headache that we should be able to deal with.
Let’s face it the only way people would truly understand is if they had them themselves and that is not something we would wish on them, they are the lucky ones for sure not having to deal with what we do.

Click here:

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Print multiple copies and keep several of them with you whenever you leave the house. When people don't understand, give them a copy and kindly ask them to read it. If they still don't want to understand, move on. Life's too short.

Brew wrote on Feb 2^nd, 2010 at 12:56pm:

Click here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Print multiple copies and keep several of them with you whenever you leave the house. When people don't understand, give them a copy and kindly ask them to read it. If they still don't want to understand, move on. Life's too short.

I will never forget the look on the face of someone I once gave that letter to.  It was just a whole new understanding of something that had been previously dismissed with "can't you just take an Excedrin?"!

People that don't suffer CH can't relate to any pain more than what they have personally felt. The pain we TRY to describe must be killing us or MUST be mental.

When I think about it, I have CH and I can't imagine this much pain.

Don

Skyhawk5 wrote on Feb 2^nd, 2010 at 10:17pm:

When I think about it, I have CH and I can't imagine this much pain. Don

Bingo....EXACTLY!

   People ar always calling my Tricycle a Bike. If they can't get something as simple as that right? How can I expect them to understand something they can't see, like my pain. After all, they're too dumb to tell the difference between a Tricycle and a Bicycle.
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   Tell me I ride a Bike.  [smiley=smokin.gif] Or that the pain can't be that bad.

Hey that's a way cool trike where did you get it? I left out my favorite during my tirade though. That was the ER nurse telling my husband that we could make the O2 tank last 30% longer by lowering the lpm. Problem with that was Brad believed him and being the helpful guy he is tried to readjust when I was having an attack. Couldn't understand why I was so mad at him.

One doesn't GET one of those trikes. One BUILDS it.

O.k. you are officially the coolest person I know! 8-)Oh and my dingbat husband was trying to be "helpful" again last when he discovered my regulator was set too high. He's lucky I didn't kick him in the balls and give him an ice cube!

I didn't know you COULD set the regulator to high.

Jerry

NancyB wrote on Feb 3^rd, 2010 at 6:06pm:

Hey that's a way cool trike where did you get it?

   You buy a trike, or build a trike frame. There are plans on the internet. After that its all up to you. A bit of Carbon Fiber here, some fiberglass, PVC pipe, a few zip ties, bike parts, car parts. Find a junk pile, and don't be afraid to use it.
   Its surprising what you can make in the middle of the night with a Dremel, when you don't want to sleep, or think about the pain.
   The you're flying down a back road in your lawn chair eating a sandwich, having a cool drink, listening to the birds and enjoying the view. Have to wonder what the peons are doing right about then  ;)

As an avid cyclist I have to know- how does it handle? How fast can you go? How is it on a steep down hill? How stable is it? I gotta know!

If you dont get them ,You dont get it! :-/

Happy Pappy wrote on Feb 6^th, 2010 at 7:47am:

If you dont get them ,You dont get it! :-/

I really beg to disagree with you.  It is true that *some* don't get it, but to apply that to everyone doesn't fly.  It is true, that *we* may not feel the extent of the pain, but *I* get it better than the majority of people out there, and that includes doctors.

I have spent years trying to educate people about cluster headaches.   I guess I should stop, since I don't have clusters and could never understand what a clusterhead goes through.

Please don't. We need all the help we can get and it must be working 'cause the last two go rounds no-one knew what the heck I was talking about.This time, the Doc's anyway,all seem to know something- even if it's wrong. Must be progress.

Interesting thread.

I've never had a clusterhead in my life.  I've never felt the physical pain.  However, I do understand.  I understand the physical pain and the emotional pain sufferers endure.  Having spent years in this community, spending countless hours educating myselt, watching my husband suffer thousands of hits,  seeing some people here being hit, etc.....I, as well as many supporters, do understand.

It was said earlier in this thread.....Let’s face it the only way people would truly understand is if they had them themselves and that is not something we would wish on them, they are the lucky ones for sure not having to deal with what we do.  My take on that is.....we'd all be lucky if none of our friends or loved ones suffered.

We'll just keep doing what we do....expain and educate.  Advocate for our sufferers...for all sufferers.  Let's face it....we'll never reach them all.  Some people are just to into themselves to ever give a damn.

Point being.....there are people who understand.  A big bunch of them are right here!

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And that is why we love ya, Jackie.  You always have the exact right answers.

Jackie wrote on Feb 6^th, 2010 at 4:08pm:

Interesting thread. I've never had a clusterhead in my life.  I've never felt the physical pain.  However, I do understand.  I understand the physical pain and the emotional pain sufferers endure.  Having spent years in this community, spending countless hours educating myselt, watching my husband suffer thousands of hits,  seeing some people here being hit, etc.....I, as well as many supporters, do understand. It was said earlier in this thread.....Let’s face it the only way people would truly understand is if they had them themselves and that is not something we would wish on them, they are the lucky ones for sure not having to deal with what we do.  My take on that is.....we'd all be lucky if none of our friends or loved ones suffered. We'll just keep doing what we do....expain and educate.  Advocate for our sufferers...for all sufferers.  Let's face it....we'll never reach them all.  Some people are just to into themselves to ever give a damn. Point being.....there are people who understand.  A big bunch of them are right here!

Read this and you will have an understanding of the other side of the coin as well.  As sufferers, we also end up being supporters at one time or another when we come together here and in person.
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My Other Mom's a pretty smart cookie.

Cat

SORRY I did not mean any thing by what I said :-X
any one here who know me know I would not say any to hurt anyone! SORRY !
I guess Iam the stupid one  :-/
Love you all Happy Pappy

I don't explain anymore.  I just print the employee letter, give it to them and tell them to check out clusterheadaches on youtube...most of the time, that pretty much does it.

And where did my donut pic go???

Langa

NancyB wrote on Feb 5^th, 2010 at 1:19pm:

As an avid cyclist I have to know- how does it handle? How fast can you go? How is it on a steep down hill? How stable is it? I gotta know!

   How does it handle? Like a F-1 race car. How fast can you go? That is one of those  variable questions. On the Black Trike, on flat ground, under my own steam, setup for touring, about 48 mph for a mile, cruise at 20-22 mph. How is it on a steep down hill? More fun than you should be allowed to have. If you want to make some money, take bets from the Bicycle riders that think they are fast to race down. A Recumbent Trike can go faster, corner better and brake better going down hill than any Bike. Its all matter of physics. Smart Bike riders know this is a sucker bet and won't take it. But you get people who think because you have three wheels and are laying down, that you're slow and unstable. Up hill is another matter. I do 6.5 mph up hill all day long. I can't get up on my pedals and get leverage from my body to pedal any faster. When I get to the top I won't be out of breath or anything, and if I want to take a break I can stop anytime and just set a brake and relax. I just have to accept that I'm never going uphill fast. downhill, or on the flats is another story. My Blue trike on the other hand is setup for speed. Its top end is in excess of 60 mph and will go up a hill at about 15 mph. I'm not finished building it yet. I get two hours on the Ford test track this Spring. If neither the Blue Trike nor I break, I have every intention of posting some good numbers.
[smiley=smokin.gif]

Jackie wrote on Feb 6^th, 2010 at 4:08pm:

Point being.....there are people who understand.  A big bunch of them are right here!

We CHeads need only endure this nightmare. It's our supporters who must suffer it.