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Frustrated....advice needed please


ClusterHeadSurvivor
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I am starting to loose my wits. I generally really keep it together. But I am frustrated in many ways.

" How many times have your heard?"....oh my buddy gets those?

or "Its just a headache,cant be that bad"

or "You cant be serious?"

I have lost jobs, what I thought was best friends, and get a deer inheadlights look when I try to explain.

I even blogged about it. Advise read my blog or goggle it, wikipedia it....still same reaction

Last friend said...ya ya ya I read your blog then asked when my attacks stop? Like there is a cure.

Then argues with me his employee gets them but goes and lays down because noise and light bother him.

I explain his symptomes are of migraines which I as well get and they are 100% different.

He argues with me like I have no idea. Then sounds shocked when I tell him its incurable but I said...didnt you say you read my blog?

I am sure this scenario and many others have happened to you fellow cluster heads.

Dealing with my attacks, fatigue, stress adds to being short with people.

Is there a different way to tell people...."For frig sakes listen to me, I am trying to tell you I am an expert. Listen to me you bafoon,stop arguing with me and pay attentiont o what I am trying to tell you." Some days I wanna smack someone in the face for not listening.

I am at my wits end....I try to offer links.Videos....people just dont friggin listen

My family sees what I deal with. Shake their head in disbleief.

Others argue constantly and battle like they remotely know what we have. Like a F*****king Asprin is gona fix it.

I said to my friend....since when do they give brain surgery to people with migraines? Since when do people commit suicide from migraines?

I have had migraines since I was 8 yrs old. And I remember the exact time I got my 1st CH attack. 100% different. Ill take a migraine until I take my last breath over 1 more Cluster Headache....

ok I am done ranting...thanks for listening....join the fun

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Hi .. so sorry ,, can i ask how old you are and when yours started ?  i know telling people what my son is going through i get "oh yeah i get migraines sometimes" .. sheesh.  what have you tried on here ? RC ? vit m (i think those are mushrooms but not sure  ;) ) ,, im really sorry your dealing with so many people who arent getting it.  sometimes they dont want to get it, they dont want to see that much pain.

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Two cents from me.

The most useful description I have found is telling people that a doctor at Harvard Medical School (Halpern, of course) has compared CH pain to the pain of having a limb amputated without anesthetic.  But not once: day after day, or many times a day.   

I think that taking it out of the realm of "headache," which people immediately think they understand, and into something they can imagine happening to them, or even have seen in a movie or tv show, causes a different response.

I have also thought that inventing a different name to tell people, one without "headache" in it that sounds serious, would change the hearer's mindset.  I think you could just make one up--"opticephalagia," for example, "cephalagia" meaning "headache."   But I would also want people to know that it's "also known as" cluster headache.

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As far as public perception is concerned, I think it would be more productive to get the name changed to something much more accurate than "cluster headaches", rather than blaming people for not getting what our condition is about.

Here's my latest analogy I just dreamed up:

What if the most excruciating affliction known was something where it felt as if the nerves of your teeth were regularly, spontaneously and relentlessly being drilled with tremendous intensity beyond what any dentist drill could do, with zero anesthesia, and not only did this condition not respond to painkillers, but there was very little the medical field could do for it while it dropped the sufferer to his/her knees every time it hit?

What would be a good name for that affliction? Cluster toothache? NO!! Should someone be concerned you may commit suicide over a toothache? NO. Should someone be concerned you may commit suicide over a backache? NO. Tummy ache? NO. Should someone be concerned you may commit suicide over a "headhache"? NO.

Backache, stomach ache and headache refer to milder conditions, as soon as you tell someone you have cluster "headaches", you have basically LIED, and totally given them the wrong impression, entirely WRONG information, and they can't be blamed for believing you're just whining about a headache. Everyone gets headaches.

We need to take some responsibility here, stop dishing out the pure BS telling people we have "headaches" and stop doing it yesterday.

Does that qualify as a bonafide rant? I guess I feel kind of strongly about the "H" word LOL.  :D

[Edit: Dammit CHfather you beat me to the punch as always, slipping your post in there while I was still writing mine. Must learn to type faster. Jerry remains fastest gun in the west.  ;D 8-)]

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I loooooove the last responce....well said.

ok I know this is going to PISS some off and please take it with a grain a salt as I mean ZERO disrespect......

But WTF is eposodic???? I dont know what remision is.

So if doctors call them Clusters....for episodics...who have remission....what happens to us that are drilled non stop?

Almost 8 years non stop every day. And your absoloutely right....the pain is in the eye area...not my head. Mind you id like a bullit in it most attacks but that is here nor there.

When I tell people I say suicide headaches or hortons nueralgia because telling someone you have chronic clusters is an oxymoron sort of.

Who came up with that name?

I try to educate, blog, advocate. If people think I am biased about the pain I refer them here or to OUCH or Google and or wikipedia and they still dont beleive us, take us seriously or think we are whinners.

Good god. Seriously? I wanna smack someone in the face some days and say listen you bafoon. You do not have these, I do.

99.9% of the time I am reasonable, listen smile, say nothing.

I complain more to my wife that people dont listen.

My son who is 14 shakes his head.

Ya know whats more funny....telling people I had 4 brain surgeries for them...

That look on heir face is worth a million dollars. You cant fake "Yeah Right" off their face...

I actually had one nob say to me....wow maybe your not faking it,maybe they are really that bad....as I went in for my 2nd brain surgery....DU'H

this feels good to  rant to people that say....I GET YOU.

thanks...ok warm hugs now

Look at this pic.....Does this look real enough for you????

post-93-14384707346171_thumb.jpg

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Two cents from me.

I have also thought that inventing a different name to tell people, one without "headache" in it that sounds serious, would change the hearer's mindset.  I think you could just make one up--"opticephalagia," for example, "cephalagia" meaning "headache."   But I would also want people to know that it's "also known as" cluster headache.

That's what I do. I'm in Quebec, so I usually speak french. The proper name for cluster headaches in french is "céphalée de horton", which translates to horton cephalalgia. As most people don't even know that cephalalgia means headache, I can explain the symptoms and the type of pain. I will always finish by saying: "it is also known as cluster headaches, or suicide headaches".

Then and again, you get the idiot that thinks he has them too, and will argue with you that he\she knows more than you do. The world is filled with idiots, so it's bound to happen.

And I'm just an episodic sufferer...!  ;)

But those reactions still kinda bother me, ya know?!!

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I often say that if I had a super power, it would be the ability to touch someone and have them experience my worst pain for 5 minutes. That would settle the argument.

I like the term 'cluster attack', and I usually refer to them that way. Takes the lame word 'headache' out of the equation.

I use a few methods to describe them to the uneducated.

One, I will draw a short line on a piece of paper, say an inch long. I'll explain that this is a 1-10 scale for headaches, and the worst headache you ever had is a 10 on this scale. My worst headache lasted 7 months, to just put the scale in perspective.

Next to this I draw a second line, about twice as long and starting at about the middle of the first line (so where 5 is on the first scale). This is my migraine scale, and again it goes from 1 to 10, but is much longer because the 10 of a migraine is MUCH MUCH worse than a 10 of the headache.

Many people can relate to one or both of these scales, and I also explain that my bad migraines last 5-7 days.

I then draw a third line. This line starts at about the 8 on the migraine scale, and goes to the edge of the paper, and longer if I can. This line is 10 times, 20 times longer than the migraine line. This is my cluster 1-10 scale.

For most people, the light bulb starts to come on at this point. I point them to the Wiki page that says clusters are the worst pain known to man.

I tell them that a cluster sufferer friend of mine once dislocated his knee, and didn't know it for 3 days because the pain was so minor compared to what a cluster is. I tell them that giving birth ranks about a 3 on the cluster scale, that having kidney stones is maybe a 5.

Then I tell them my worst cluster attack ranks about a 14 or 15 on my cluster scale. That it felt like someone had shoved an ice cold steel bar into my eye socket, forcing my eye ball out of the way. And it felt like they were using this bar to pry the top of my skull off, and I could feel the bones cracking across my forehead. The pressure would increase and the crack would form, then the pressure would ease and the crack in the skull would heal, then the pressure would be applied again. Over and over this went for 30 minutes. Then it just stopped. I explain that it took me over 2 hours to gather myself up after this attack.

Trying to get somoene to grasp what a cluster attack is like, is like trying to explain the colour red to someone who was born 100% blind and only perceives black. As the worst pain known to man, if you haven't experienced it, you have no hope of understanding it.

So one has to break it down into descriptions they can understand, and then say it is MUCH worse than that, but you get the idea.

If they still don't understand, hit them in the eye with a baseball bat. Then say it feels sort of like that, but 1000 times worse.

Every day.

2-3 times a day.

And at night.

For the rest of my life.

And if they STILL don't get it, stop being their friend. They aren't the sort of friend you need. IMHO

MG

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I am frustrated tooo!!

Me having it, in the position to diagnose many patients, they don't believe me!!! If you can find totally nothing wrong with a patients teeth, and out of their history, you diagnose CH, they don't believe me! I know, I extracted my own tooth way back, thought it was the cause of my pain, before I was diagnosed!! Yes I am a dentist!

I see so many woman, after menopause, which I believe has CH, men like always, are not so easy to talk to(me being a woman), they don't open up much!! I think they think they are pissy's(not brave) complaining about pain nobody will understand, or believe!

But still they would rather go back to their medical doctor, who doesn't know anything, or know something, but knowing nothing really works, will give the patient anything, to see if it will perhaps help????

I was so lucky!!! Haven't been on much of all the medications all you've been on!!  Thought my neurologist was an asshole, but actually he was an angel! He directed me to clusterheadaches, and then I found clusterbusters!!

These are not headaches!!  It is more like Trigeminal Neuralgia! Which the doctors treat with anti-epileptics!!!

But it is not that either!!

Hopefully pain free days to all!!

h

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CHSurvivor ...... that is one worth memorizing!

I still laugh at the sweetest little old lady, who seeing me crumpled-up on the lawn behind a tent at the local County Fair, sobbing like a wounded animal and rocking back and forth .... offered me a tissue and said "There, there honey, it will all be OK".  She patted me on the head and then said "all better now?"

No description can adequately describe the pain we experience, so I don't even try.  At least we have each other, who can certainly relate ...... and thank goodness for that!

weatherman

ps  I heard some of the most outrageous tales from people at the Conference in Las Vegas.  We all enjoyed each others "nightmare stories" about getting stuck in public places with no abortives and the Beast kicking our asses.

Yes, misery does love company

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'Debilitating Neurological condition' I tried Cluster Attacks for a year to no avail. My new one usually gets an 'Ohhhh" and no more questions or comments.

My favorite theoretical solution: Clamp a wire to the eyeball and another to the temple. Now, shove both into an outlet. When their eyes go blank and they drop, remove the wires from the outlet. When they wake up ask how they enjoyed their 'headache'.  8-)

I have given up trying to explain to anyone. My friends already know people die from this, the rest don't matter. The Nat Geo show helped inform a lot of people about it. But, since it was about 'drugs', a lot of people would not watch it. Surely did give my husband a new perspective though. To see men dropped by it showed that I handle it pretty well. Now he understands how I can bend the steel bars on my headboard!!!!! :) He also understands that most of us need to be alone most of the time when it hits and it is not because he is a bad husband.

spiny

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I hear that all the time - so I just say I have a painful neuro condition that I dont like to discuss lol

Some will ask what it is and I tell them - take the worst ice cream headache you have ever had and multiply it by 1000 and have it for 45 minutes. This is a small sample. Some say ouch and others say well what is it called and tell them cluster headaches and some people will say oh ya my friend has bad migraines too. lol - I give up - I think we need a new name for this damn thing. Something like neuroclustitious.

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Happened again yesterday,....Oh my brother gets those.

Cluster means a bout of them correct? Well what about Chronic with no remission like me?

Hortons Nueralgia was the 1st name. That one works best, then I just say nickname Suicide Headache. And then get ...Ohhh.

If I said to men....hit your nuts with a rubber hammer as hard as you can.....guesstimate the pain. Multiply it times a million then transfer than pain to your eye and you MIGHT have a remote clue what the pain is.

If I was a woman and explained its worse than childbirth, people might beleive me. But I am not a lady.

Suicide Nueralgia? How about that?

Loadis Bullitis in Gunis?

Worst f*cking pain a human gets?

I dont know.....Im tired of defending us like we are a bunch of whiners,complainers,hypocrits who seek attention or drugs. Its none of that.

Maybe....Ill print off a wikipedia sheet and just hand it to people.

:'( :'( :'(

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I hear you man - one time about 15 years ago I went to the ER - my doc told me to go there to O2 during an attack - they treated me and finally asked me what kind of pain killers I was looking for. They thought I was faking it until I called my neuro office and they then called the ER for me.

It has always seemed to me that because they cant see it there is nothing wrong. If I went in there with a finger on ice that had been cut off they would be trying to hurry up and treat me and could see that I was in pain - but because this is in the brain they think it isnt that bad cant be that bad- they also think of it like a migraine as well.

I do like the name of Loadis Bullitis in Gunis!

we should start calling them that. Im going to test it out.

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I do like the name of Loadis Bullitis in Gunis!

we should start calling them that. Im going to test it out.

Please tell me you mean the quote...

Other day son and I went to auto wreckers...its what us Canadian car guys do in the winter. Walked in and guy inside was ranting about some schmuck who called there by accident wanting to commit suicide. He was upset the guy called  him. What an incensitive prick. I wanted to knock him out. I was so upset and it still bothers me....because I been there. I did want to die in 09. Suicide is real. What if this guy had a gun, was on a bridge or whatever....I would have kept him on line. Got him help from 911 or suicide hotline or coaxed him out of it. Not hang up on the guy and call him an Fn idiot.

Im still boiling. Some insensitive pricks in this world.

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I do like the name of Loadis Bullitis in Gunis!

we should start calling them that. Im going to test it out.

Please tell me you mean the quote...

Other day son and I went to auto wreckers...its what us Canadian car guys do in the winter. Walked in and guy inside was ranting about some schmuck who called there by accident wanting to commit suicide. He was upset the guy called  him. What an incensitive prick. I wanted to knock him out. I was so upset and it still bothers me....because I been there. I did want to die in 09. Suicide is real. What if this guy had a gun, was on a bridge or whatever....I would have kept him on line. Got him help from 911 or suicide hotline or coaxed him out of it. Not hang up on the guy and call him an Fn idiot.

Im still boiling. Some insensitive pricks in this world.

Wow this is bad Karma - very bad karma. :-[

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  • 3 weeks later...

I feel the same way. Every time I try to explain what is going on, people look at me like I'm crazy or say "oh I know what you mean". It sucks, even my family thinks I'm full of it. They say if its that bad, go to the hospital. For what?? They can't do anything! Ugh so frustrating. I'm so glad I found this website though. Makes me feel better that there are people who actually do understand. Sucks we all have to be in pain though!!

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Makes me feel better that there are people who actually do understand.

Agreed.  :)

..Sucks we all have to be in pain..

Fortunately a bunch of us have found that busting is a super effective preventative - the most effective preventative out there - so we don't all have to be in a lotta pain anymore.  8-)

There are still a smaller percentage of CH'ers for whom nothing works so great yet, and that I will admit truly sucks.  :( Maybe BOL-148 will help them if/when it becomes a prescription med.

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I just tell them I have a defective hypothalamus that causes severe brain seizures, classified by the medical community as the worst pain a human can experience. Usual response... "Ohh Wow", sad look and silence. Works for me since all I really want is them to NOT underestimate my pain.

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I'm right there with you guys.  Sick and tired of being sick and tired over trying to explain this thing.  I gave up on it.

I lost the only person in the world (besides you guys) that TRULY understood.  My ex-wife.  She was there for those first 2 horrifying months before I was diagnosed and got some tools to work with.  It was nice to talk with someone who understood what it really is that we go through.

My own mother saw me take the full brunt of an attack one time and had the gall to tell me that I was being a "drama queen".  WOW..... I was speechless.

I feel like I got voted into this very special club.  So whoever voted for me .... thanks but no thanks :)

I have resigned myself to the fact that if you don't have CH you don't even deserve to know what they are like.  Or at least you don't deserve me wasting my breath trying to explain it to you.

I have met a few people who are genuinely interested, but it really is impossible to explain it to them.  So I gave up!

I do like some of your analogies though.  Some good stuff for real :)

As sad as it is, I have never met another sufferer face-to-face.  I cannot wait for Chicago.  I don't know how I will act around people that just "already know".

Hope to see you all there!  And keep the analogies coming ..... if nothing else, they are good for a smile :)

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