It's not a competition you know!

[Tyke]

As you might expect I've been talking to my friends and family about CH since the start of my latest cycle. Whilst I've had a fair bit of support I am now getting a bit sick of people who suffer from migraine belittling the pain I have to endure and continually arguing that no headache is as bad as a migraine and their pain is far worse than mine. Says who, since when and who fecking cares whose pain is worse? I certainly don't. Is this normal and am I right to feel aggrieved?  >

[spiny]

Is this normal and am I right to feel aggrieved? 

Yes and Yes. > That is why so many of us hate the misnomer Cluster Headache  A 'headache' it is not!!! And no, you will not be able to change anyone's mind either! Personally, I have resorted to 'Rare Neurological Condition' and leave it at that. Migraine sufferers often have been told or led to believe that they have the absolute worst headache on the planet. So, you are a baby who needs an aspirin and to shut-up about your pain. 'Suicide Headache' is a term some can grasp. Frustrating as hell isn't it?

[Jeff_007]

Tyke,

I think we have all been through this. I dont know how many times that I have tried to tell people about my CH, only to hear them go into how bad their migraines are. Now, I usually cut them off with a little snicker and say somthing like, "oh, these are way worse than migraines". They usually look at me like, "well, that cannot be!" So I now just say, "go look it up and then tell me about your migraines". I usually say this in a demeaning way to get them to try to prove me wrong, only for them to come back with this sorry look on their face and then say something like, "OMG you have that?" 

Unfortunatly this condition is so rare, that nobody has even heard about it and they just assume that CH is having a cluster of "regular headaches".  I quit trying to explain it to people, and just usually tell them to come talk to me when they have looked it up and done some research.

That is why places like this are so powerful to a clusterhead. To just be able to have 1 person say that they can relate to you is the most satisfying thing to me. I think I was in tears when I finally spoke to a fellow cluster head. :'(

[Tyke]

Jeff, I cant tell you how good it is to talk to anyone who has the slightest incling of what CH is, the pain it brings and how it affects our lives. For 12 years I have pretty much been on my own. My ex Mrs was about as much use as a chocolate teapot (hence why she is now my ex Mrs) in the support department and pretty much dismissed my pain altogether. 'It's just another headache. Take some paracetamol and stop your crying' was a regular phrase in our house. My parents couldn't believe a headache could bring anyone to their knees until they found me curled up in a ball on the living room floor one night, crying like a baby with half my hair in my hands. Last but not least are my mates who just take the Michael all the time. Strange as it may seem the mates approach actually helped more than anybodies as they at least acknowledged my pain and didn't just dismiss it or downgrade it like most people.

[ClusterHeadSurvivor]

I specifically wrote a blog about this....im sure if you read my blog you will find many similarities. One thing I do find....if it comes from someone else(stranger),people listen.

Why,? I havent the foggiest clue....send them to my blog and read...

www.clusterheadsurvivor.blogspot.ca

[iPain]

As a sufferer of both migraines and CH for 13 years, I can tell you that I will take a migraine 24/7/365 rather than a weekly CH.  Even my neuro gets that!

[Bejeeber]

so many of us hate the misnomer Cluster Headache  A 'headache' it is not!!!

Amen.

We all need to stop referring to our condition using the term "headache" and stop doing it yesterday IMO, otherwise we're just asking to be treated accordingly.

[weatherman]

Tyke,

Yes, you have the understanding and sympathy from ALL of us, because we've been there too.  Pretty much everyone who has ever had a headache (and that IS everyone) thinks they are all cured with those "extra-strength" aspirin.  I typically avoid any explanation at all, just say you'll be OK and leave me alone.

Migraine sufferers are led to believe they are especially victimized by pain.  They take OTC meds, lay down awhile and it usually goes away.  But they do suffer too.

I like "neurologically-induced self-annihilation" as a description of how I feel.  Then ask, "How often have you considered death as a remedy for the pain?"

When they really don't get it, explain the KIP Scale, and how a tension headache is about a "three" and migraine headaches rate a "five/six".  Can you imagine worse than that?  Then tell 'em you take Migraine meds when you stub your toe.

   

The real game changer is having them actually witness a K8-9 happening.  Show a video, there's plenty out there.  Curls my short-hairs to this day seeing that happen.

We're always here for the latest in rants, support and advice.  Hang in there!

weatherman

[HeadacheRelief]

I get migraine headaches which is why I am here.  I knew next to nothing about CH until I discovered this discussion forum.  In fact, I questioned if I might have CH when my migraines were coming daily.  Ha!!  I know better now. 

While I have never had a cluster headache (or whatever the proper term is) to compare to my migraines, from the accounts I have read here and in doing a little research, I now realize that yours is the worst, most intense pain ever.  I feel for you all and wish the public were more aware and sensitive to what you must suffer.

Migraines - a ripple on a pond.

CH - a tsunami. 

[MoxieGirl]

I think it is important to remember that the title of this blog works both ways.

I have daily chronic headaches, giving me a headache 5 days out of 7. My longest running, single headache, lasted 7 months. Plus, I have had migraines all my life, a bad one will put me in bed for 5 days. On top of all that, I also have cluster attacks, getting 200 or more a year for the last 6.5 years.

I post about my headaches a lot on my Facebook page, and all my close friends 'get it'. They know the kind of pain I suffer with, so much so that if one has a headache and complains about it, they'll turn to me and say, 'well, it's not as bad as yours.'

But that doesn't stop me from giving them sympathy, understanding and care. When my best friend has a migraine, I don't go to her and say, 'well, it's no where near as bad as a cluster, so get out of bed'. To her, a migraine is Hell.

And as a migraine sufferer, they are Hell! We all have our Hells, and don't go trying to belittle someone else's Hell because your's is worse. Hell is Hell.

When you read the description of my headaches, where you instantly comparing them to yours? Were you thinking, 'That MG, she has it rough, but at least she doesn't get hit every night, 3 times a night, with hour long clusters.'

And you would be right, I don't. In fact, I am always comparing my clusters with those of other people on this board, and I often think I don't have it bad in comparison. But that doesn't mean I live in less Hell.

I generally take the tack of understanding and sympathy when someone complains about their headache or migraine. I might end the discussion with, 'Yes, I get it. I have these rare things called cluster attacks that are beyond belief.' Then I might follow up with one of the two statements below, if they are open to more information. If not, just leave it there.

"Someone once posted on one of my threads saying they had dislocated their knee playing football, and didn't notice it for 3 days because the pain was so trivial compared to a cluster."

"Have you ever had a muscle cramp in your leg? Try having one in your eye for an hour. "

If I want to sound medical, and avoid the 'headache' in cluster headache, I might say I have unilateral acute cephalalgia attacking the trigeminal nerve. That will quite often get their attention. But I rarely call them cluster headaches anyway, much preferring cluster attack.

Just remember, if they don't have clusters, they won't 'get it'. So don't get frustrated by them not getting it.

MG

[wiggyworks]

I'm a newbie here and I've been spending a small fortune on oxygen but I still have my 2 cents worth. :-)

Clusters have brought me close to suicide several times, this cycle included. It's not about whose pain is worse. Making the statement that Clusters are worse than migraines or any other form of pain is not to belittle or diminish, it's an attempt to be understood. I don't want your sympathy, it's not unwelcome, but it's not what I'm after. For some reason reading about the guy who advocated getting a long hose on the oxygen mask so you could pace made me feel better. There's someone who understands. Finding this forum and a collection of people who understood, realizing that there were that many people who experienced the same thing, was a blessing for me. Reading just a bit about you MoxieGirl gives me hope and encouragement, not because I think you suffer more than I do, but because I know you understand and you've made it through. Regardless of the fabulous advice and info on where to get supplies and the brilliance of someone suggesting I sleep sitting up in a chair, (it worked), is the fact that there are people who know and understand. For me, seeing suicide as an option has two components to it: getting away from the pain; and getting away from the loneliness and isolation that not being understood brings. I do not speak of this lightly. I have a wonderful family, children & grandchildren..... but you people have saved me! In the middle of an attack if someone offered me the choice of oxygen or understanding ....... I'd of course grab the O2 ...... but I'd want the guy who understood to stick around!!

[Ricardo]

I think it is important to remember that the title of this blog works both ways. 

But that doesn't stop me from giving them sympathy, understanding and care. When my best friend has a migraine, I don't go to her and say, 'well, it's no where near as bad as a cluster, so get out of bed'. To her, a migraine is Hell.

And as a migraine sufferer, they are Hell! We all have our Hells, and don't go trying to belittle someone else's Hell because your's is worse. Hell is Hell.

Could not have said it better myself.  Forget whose in more pain and give sympathy to anyone and everyone in pain.   Pain is pain and hell is hell. 

Thanks for the Wisdom Moxie!

[Tyke]

Frustrating is not the word but it's good to hear others find the same issue. Like I said at the beginning, I really don't care who has the worse pain or whose last longest. When I tell people about CH and the pain we are unlucky enough to have to endure, I am only doing so in the hope that people understand or acknowledge what effect Leonard (my new name for our beast) has on our lives. The last thing I want is to enter a debate about it.

If you are wondering why I've named my beast Leonard, I've named it after "Master Leonard" demon or spirit of the Dictionnaire Infernal. He was a three horned goat demon with a human face and believed to mark his initiates by driving one of his horns into their head. Seemed appropriate so Leonard it is.

[Ricardo]

The last thing I want is to enter a debate about it

Right?  It is always amazing how you can just be trying to explain why your eye looks like you got stung by a hornet or why you aren't going to go out boozing with people and people will try and trump you.  Truth is, they don't understand, and they can't.  Until I got hit with Clusters I couldn't understand either...These days I just shrug my shoulders and remind myself that IF they knew, they would most likely shut the hell up and have sympathy.  But they don't and they can't, so oh well.  Many people have things to bear that I will never understand...

If you are wondering why I've named my beast Leonard, I've named it after "Master Leonard" demon or spirit of the Dictionnaire Infernal. He was a three horned goat demon with a human face and believed to mark his initiates by driving one of his horns into their head.

I had never heard of this book and it looks amazing.  Leonard seems appropriate indeed.

-Ricardo

[MoxieGirl]

I think trying to explain what a cluster attack is like, is like trying to explain the colour red to a person born blind. All they know, all they can perceive, is black.

Colour, like pain, must be must be experienced in order for us to have a shared understanding of it.

Not completely ignoring all I said above, I have also often said that if I had a special power, it would be the ability to touch someone and give them a 1 minute cluster attack.

MG

[spiny]

someone suggesting I sleep sitting up in a chair, (it worked)

  [smiley=tekst-toppie.gif]

Hallelujah and pass the cornbread. ;D I am really glad it worked for you wiggyworks!

[Clusterman59]

Hey Wiggyworks!!

Ha! I'm the guy that designed the o2 system with the 20 feet of hose so you can walk around and I also told you to sleep in the lazy boy!! Lol!! I do understand and care a great deal for those that suffer as I have been a chronic CHer since 1973.

I want to help those that have chronic pain as I also suffer from severe nerve damage from 17 major operations many of which were botched. CH, Migraine or other headache disorders or just plain nerve damage or chronic pain in any shape or form is just that...PAIN!!... We all suffer differently but it is what it is and pain is a serious cause of depression no matter how severe. If it is chronic and never ending or episodic and intense It effects us all in many different ways and should be given SUPPORT,  RESPECT and UNDERSTANDING....