Friends and Family just don't get it!

[alleyoop]

Very well put Darrin.

Thanks for sharing.

bobb

[Chad]

Darrin,

Great post.  I have done this explanation thing to many and lot of my buddies get it.  Instead of informing them how the pain feels, I just take them inside, bring up Youtube on the computer and show them what ClusterChuck goes through on his short video.

I then watch the terror in their eyes and then they understand this is not a migraine, but a much bigger, bad-ass monster.

If they want to learn more, then I explain over a beer of course (when i'm in remission), about cycles, episodic vs. chronic, oxygen, meds and of course busting methods. 

A lot are amazed at the busting thing, but when you draw it on paper on what it does to the 5HT receptors, it usually confuses them and they are convinced it works.  A lot of my friends use to party a lot so they too are totally up for being busting buddies if I go the psilo route.  For now, i'm a rivea corymbosa supporter and they're even growing on a trellis in the back yard. 

[davidj]

Darrin,

I need to change my friends and family, can you adopt me into your fold?

David

[tingeling]

Darrin,

excellent way.

I told a friend about this treatment. she work in psychiatric, and did not like the treatment at all. I told her to go check out Clusterbusters, she did and came to me and said i thnk it is time for you to go get some of that.

It get more real, when people see it themselves. And it will be the easiest to compare with the worst we know of ourselves. It`s just human nature.

[jayhedges]

I don't say much to my kids in their 20's because they would really worry. Now that I feel I can manage the Beast, I have just stopped talking about it other than here.

But....my ex wife (only 6 months ex) after 26 years together called yesterday and just bitched up a storm about how she has to work now after not working for 25 years (she wanted the divorce) and what an ass the doc she works for is. Ex is a nurse...helped me with migraines for a long time...very supportive. After about an hour of listening (why would I do that? Can somebody explain) She said, oh I better let you go I might cause you  to have another headache...By the way how's that going. I said good you won't believe what I learned about O2...then I hear "Hey someones beeping in, gotta go. Hope you feel better". I felt so geed after that...LOL

[lucidity-]

A common thought that I've seen in this thread and others is that clusterheads get very angry when strangers say "oh, I know what your headache is like, I get bad headaches too." I too get angry when people tell me to just put my head on my desk for 5 minutes. But I'd like to point out that headache is right there in the name of the disease, and this invites the comparison. I mean, which sounds more threatening, if you know nothing about them - "cluster headache" or "migraine"? I would lump "cluster headache" in there with "caffeine headache", "tension headache" and "sinus headache" - all just types of headache - and figure that migraine must be special because at least it gets a special name.

I think we should encourage the medical community to rename the condition "Cluster Skullfµck". If that seems too offensive, "Suicide Headache" is another viable option. "Cluster Headache" is just too cuddly. It's like calling the Prince of Darkness the Baron of Twilight.

[davidj]

Agreed Lucidity on the stupid term headache, I call mine a neurological disorder, sounds much more interesting  ;D

[lucidity-]

One more thought. You are certainly justified in getting angry when people trivialize the living hell that this disease can turn your life into. But you can make a conscious choice not to let them make you angry. There are techniques available to help with this, including emotional shifting and separation of thought from emotional content. Thoughts are just thoughts, we can chose to observe them and let them go, moving on to the next thought in moment to moment awareness, although this takes practice.

If there is a Mindfulness Based Stress Reduction class in your area, I would absolutely recommend it to each and every clusterhead. I am very familiar with the program through my work, and have taken it myself, and am happy to discuss it in more detail with anyone. This website can help you find a program: http://www.umassmed.edu/cfm/mbsr/

To me, if you let others make you angry, you let them win. By refusing to get angry, you reassert your power to determine your own experience.

No one can make you feel inferior without your consent. - Eleanor Roosevelt

[lucidity-]

jay: because love is complex. Check out this comic http://www.facebook.com/l.php?u=http%3A%2F%2Fmingle2.com%2Fdating%2Fphases&h=dd97e I used The Decline as my desktop background for a few weeks.

[alleyoop]

My one and only experience at the ER with CH:

I was rear-ended in my truck a couple of years ago.  My head popped the rear glass out from the force of the collision.  I felt ok, so I refused the hospital.

Later that evening I got hit pretty hard, and again the next day.  I called my neurologist's office, and they told me to go to the ER to get a CT scan to make sure I wasn't hemorrhaging.  I went that evening.

Of course the waiting room was packed, so when I signed in, I told them of my CH and explained that if I had an attack would they please get me high flow oxygen with a non-rebreather mask.  She gave me one of those not so assuring looks and said, "Sure."

Not quite an hour later, I started feeling one coming on and went and asked for high flow oxygen with a non-rebreather mask.  Ten agonizing minutes later, someone wheeled out an E tank with a regulator that went to 8 lpm and a cannula.  By this time the pain and panic were starting to set in and I told them that this set-up would not help, explaining again what I needed with tears streaming down my face.  :'(

The pain was obvious to anyone, so they immediately took me back to one of the ER rooms, and instructed me to get undressed and to lie down till the doctor got there.  I told them that they did not understand, and threatened to just leave. 

They sent their very young doctor in who began telling me the same thing -- to get undressed and lie down and he would start an IV with a pain killer. 

I headed out of there and told them, "Thank you very much, but you just don't understand.  I'll take my chances driving home."  I headed for what I thought was the way out, only to find myself going deeper into the hospital.  Finally someone showed up and told me they would show me the way, but took me back to the same ER room.  The same doctor was there, but this time they gave me a non-rebreather mask that had a good flow of o2.  About 15 minutes later I was good to go. 

They went ahead and did the CT scan which thankfully was negative.  In the meantime I gave this young doctor a crash course on CH.  He said that he had thought cluster headache was more along the lines of tension or sinus headache.  He said that he had dealt with migraine and thought that was possibly what I had, except that he had never seen a migraineur so agitated.  >

I gave him a couple of links to peruse when he had time, and left. 

Needless to say, I never have and never will go to the ER for my clusters.

bobb 

[tingeling]

OOOoooh..... ER......  ;D....

Last time i was there for CH, long time now.....

I must say i`m a little embarrassed

LOL ;D ;D ;D

[jayhedges]

lucitity- was it the anger management class that helped you deal with people "mispelling" your handle with a hyphen rather than a minus sign? PLO

Great link but the way...

[lucidity-]

The hyphen and the minus sign are actually the same symbol, so you can't really misspell the handle, only mispronounce it. MBSR is about more than anger management, but anger management is certainly a part of it. You'll notice that I'm answering your rhetorical question literally. You'll find I almost always do this. I'm probably one of the most literal people you'll ever meet. What does PLO mean, even google is stumped.

Why do I have this urge to shove you in a snowbank with a smile?

[tingeling]

Maybe because of anger management class?

No, just kidding just had to poke you a little

[jayhedges]

In an earlier post you made a point to tell me that it was a minus sign and not a hyphen. I thought it was an interesting distinction since they do look very similar, but actually, I believe the hyphen (-) is created by using the function key and the colon/semi-colon key, and the minus symbol (-) is created with the lower case underline button to the right of the 0. Somehow I understood your earlier post to be distinguishing between the two, because I had left off either (both). PLO is how my 21 year hippie wanna be college student daughter affectionately signs her text messages Peace Love Out. I am surprised Google didn't bring up the Palestine Liberation Army, actually of the same generation. The urge for the face in the snowbank thing, while justifiable, I attribute to an anger management issue with sarcasm for which I have an affinity when pf...PLO & AIGF (all in good fun)

[lucidity-]

As far as how to make the symbol, that's keyboard specific. On my laptop, function+; yields a plus. Function+p yields a minus. I've never made a distinction when typing the nickname, only when saying it: lucidity minus, not lucidity hyphen or lucidity dash.

Of course, I just had to geek out. Used the CODE function in Excel to analyze the output of function P and the output of the key next to 0 on the top row. Both are ANSI character set 45. Even the much more comprehensive Unicode, which has literally hundreds of thousands of characters, uses a single character for both, U+002D: Hyphen-minus.

And actually, the Palestinian Liberation Organization is the #1 google result for PLO, but I knew that wasn't what you meant. I also read the list at acronymfinder.com, but none seemed correct in context. Even urbandictionary.com doesn't have Peace Love Out. It must be original from your daughter or her clique.

I, too, can be very sarcastic. And honestly, I'd never actually get physical with someone. I'd just give you a Look. *arched eyebrow* Of course, with 26 years of marriage under your belt, you could probably out-Look me without trying.

And absolutely, all in good fun.   

[Texas Cluster]

Back to topic on this thread..I agree with showing uninformed people, friends and family by showing them the link to the YouTube of clusterchuck, but you know what...when I am there and watching it with them..I last about 2 minutes and start crying (40yo and cries like a baby) then get up and walk away..as I do..they ask if I am getting one now..I tell them no, its so hard to watch someone go through it when you feel and know exactly what they go through.

my wife took a video of me and I didn't even know it..seeing it makes me crash, its hard to see someone go through pain when you fully understand what it is they are going through expectually when it's you on the video.

I also feel like we knock Dr's down alittle more than we should (I am just as guilty on this) but it's all about ignorance we are ranting about here, they are trying to help and that's what they do..for most conditions their patients they can treat cause it's treatable..

they are doing what they can within their power legally and we have to at least thank them for trying, I know my Nero cares and wishes he could stop them for me..but we all know it's a hit or miss on our condition.. I have heard of some folks getting total relief from verapamil.. so lets all think about them at least trying.

think about all this as we keep this site growing..every one of us are getting the word out there.. eventually this riddle will get answered when the right person gets wind of it, we have several working on it as we speak, but the CH community is growing and something will be found sooner or later..

so I let the ignorant be ignorant, at least I know one more person has heard of it and its growing

they cant leave us suffering like this, If an animal of any kind was acting like we do when under an attack they would put it to sleep quickly.

I am just glad we have who we do at Harvard and know that they wont leave us hanging and the folks that donated that 6million to research of headaches..at least we know Dr.s and scientist are working on getting us the best treatment and finding the cause.

thinking I will just start carrying a copy of that colleague letter as a hand out so I can save my breath if they cant understand after reading that..screw'em don't need them.

we have no choice but to deal with CH no need to add anger with it.

I talk alot dont I

    Darrin

Texas Cluster

[lucidity-]

no need to add anger with it

I couldn't agree more, Darrin. The anger, resentment, fear, and depression that chronic pain can cause just erode the quality of life you could enjoy in PF days.

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. - Bene Gesserit Litany Against Fear

You can substitute any negative thing for fear.

[TXClusterHead]

Sorry, I know I'm late posting to this but ya'll had me cracking up. I think I going to try every one of those, from the "No, I've never tried anything for them, why do you ask", to the, "it went away couple of days ago, just forgot to tell you" ;D But David is so right. My goodness, I can't tell you how many times I've had people suggest stupid shit to me that makes me want to drop kick them. Oh, have you considered going to the chiropractor? Oh, have you though about cutting caffeine out of your diet? Oh, you just need to hit this joint (which thanks for that suggestion and as fun as that sounds aint gonna do shit for me accept piss the hulk in my head off!) You just wanna grab'em, shake the shit out of them and say listen, please do a little research before making any suggestions dr, thank you.  > ;D

[davidj]

I went on a little 3 hour boat cruise networking event on Wednesday and I brought a D tank on board with me to be on the safe side (been PF for a week or so). I think I finally have my answer down when I was asked what the heck that was about...." I suffer from a painful neurological disorder called cluster syndrome, it can be very painful and debilitating but pure oxygen can relieve an attack in minutes". Not one person that asked me about the 02 tank (and there were about 10) tried to give me a cure, I think because I did not use the work "headache". If anyone wanted more info I told them this syndrome attacked the  nerves in my face.

David ;D ;D ;D

David

[jayhedges]

"a painful neurological disorder called cluster syndrome"

Awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Mad6string]

That's so great! I was looking for you to post this.

Great talking with you the other night. It helped me a lot!

Mad6string ;D

[shaggyparasol]

Good thread ya'll. Once I got my busting down and the pain has been kept at bay for months, I have a lot more patience to explain in detail to my friends and family.  When I am getting my ass kicked by the clusters I have a much shorter fuse on the subject.

One of the best things I have learned the last ten years is to be careful of the timing of important discussions.  When people are feeling good, the conversations go a lot better.  In the throws of hell you can expect a cf (like ch except the last word isn't headache).

--Shaggy