Describing CH to non-believers

[MoxieGirl]

I've come across a few posts recently where people have said that those around them don't believe, or understand, the level of pain created by a cluster attack. That they think it's just a migraine. 

I thought I'd start a post on how to adequately describe the pain of a cluster attack. Feel free to jump in with your own examples.

Also, I've made it a habit to call them 'cluster attacks', not 'cluster headaches'. I personally feel the word headache undermines the severity of what we go through. In my mind (and in my descriptions below) I view them as an attack. No one gets PTSD from a headache, but you can get PTSD from an attack, and that's what these things are. At least, that's how I see them. 

Here's my favourite one that I've used that seems to get the point across.
 

Quote

 

Think back to the last time you had a really bad muscle cramp, which most people will have gotten in their calf muscle at one time or another. Remember how the pain came on suddenly, how it crippled you and how it drew in 100% of the focus of your mind. All you could think about was the pain in your leg and when would it stop? The world around you completely melted away apart from that intense, relentless pain. Think back to how you would have done anything, absolutely anything, to stop that pain.

Most people don't remember actual pain, but they can remember how it affected their thinking and changed what they were doing, how it altered their focus. So it's important to remind them of that. Yes, something 'hurt', but how much did it hurt is difficult to get across. But, if something hurt so much it consumed all of your thinking for 5 minutes, and you couldn't focus or see anything apart from the pain, people will remember that.

Once you have someone thinking back to their muscle cramp, and how it made them stop what they were doing and fall down on the ground, gripping their leg for all their worth and crying, or virtually crying, you can get them to see the all encompassing impact the pain had on them. Then, you can take them to the next visualisation, of increasing and relocating that pain to an even more sensitive spot on the body. It helps to remind them that in that moment, they would have done ANYTHING to stop the pain. 

Now, double that level of pain. Then, double it again. Then, compress it down to the size of a golf ball and relocate it to your eye and have it run at that level for 3 hours.

 

Here's another one I like, slightly more graphic.

Quote

 

Imagine 3 large men break into your house at random times during the day and night. While two men pin you down on your sofa, the third man props your leg up on the coffee table and begins to saw it off, just below the knee, with an old rusty saw. Once that leg is off, he moves to the other leg. While working on the 2nd leg, the first leg grows back.

Back and forth he works, cutting one leg off, then the other, waits for them to grow back, then repeats. For 2-3 hours. Then they leave, and both your legs grow back within minutes.

You know they'll be back. You just don't know when or how many times today.

 

And a third description.

Quote

 

Imagine you're walking down the street on a beautiful day. As you emerge from behind a corner of a building, someone smacks you on the eyebrow with an aluminium baseball bat, having swung the bat with all of their might. 

You are knocked backwards off of your feet, and land hard on the ground. The assailant instantly pounces on you, and begins to gouge your eyeball out with red hot crochet needle. 

Once your eyeball is out, and hanging on your cheek, they proceed to pour liquid nitrogen (that liquid that freezing anything solid in seconds) into your empty eye socket. 

 

I could go on, but I'm probably grossing you out now. The first one is a really good one though. 
 

Mox

 

 

[Pebblesthecorgi]

I appreciate what you are trying to do and have often thought how to communicate the exquisite pain cluster headaches  produce.  In reality, like a mystic psychedelic experience, it is ineffable, there are no words to describe the experience.  There is no empathy except from another fellow clusterhead.  The whole thing sucks beyond measure and to me it doesn't matter if anyone understands so I don't bother.  Words always fall short.  For the persistent soul who presses the issue I direct them to YouTube and Dan's national geographic appearance.  The video does more than words could ever convey.

[xBoss]

Tired of people that say stuff like yeah, I get headaches too.

[MoxieGirl]

Yeah. I used to call anyone that less than 10 migraines a year an amateur. 

[johncluster]

16 hours ago, MoxieGirl said:

Imagine 3 large men break into your house at random times during the day and night. While two men pin you down on your sofa, the third man props your leg up on the coffee table and begins to saw it off, just below the knee, with an old rusty saw. Once that leg is off, he moves to the other leg. While working on the 2nd leg, the first leg grows back.

Back and forth he works, cutting one leg off, then the other, waits for them to grow back, then repeats. For 2-3 hours. Then they leave, and both your legs grow back within minutes.

You know they'll be back. You just don't know when or how many times today.

 That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened,    many people did , who had to endure this kind of torture as prisoners of war....

The pain is bad but compering it to gruesome  horror amputations is just insane,  way over the top.

You would basically fall into a shock from the pain,,,probably lose consciousness,  many times during the CH attack  and after 2-3 events like this, you would probably die from shock  or a heart attack ....

Suicide rate in CH sufferer would be 100%

Don't take in personally but , this would not help to in explain  to people what CH pain is.

My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion 

 

 

Edited April 12, 2019 by johncluster

[devonrex]

3 hours ago, johncluster said:

 That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened,    many people did , who had to endure this kind of torture as prisoners of war....

The pain is bad but compering it to gruesome  horror amputations is just insane,  way over the top.

You would basically fall into a shock from the pain,,,probably lose consciousness,  many times during the CH attack  and after 2-3 events like this, you would probably die from shock  or a heart attack ....

Suicide rate in CH sufferer would be 100%

Don't take in personally but , this would not help to in explain  to people what CH pain is.

My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion 

 

 

During my net trips and so on, there have been accounts of people who have ch and have had traumatic amputations, they would choose the amputation again, same for childbirth, gunshot, pretty much any physical trauma you can imagine, hell I would pass kidney stones 5 times a day over this. Shock and pain closest is neurogenic shock, which can be caused by a sudden extreme onset of pain, causing blood pressure to drop, great thing about most of us, pain goes up on a curve, not sudden onset, so we can hit top of the line pain and not suffer the neurological shock effects.

 

And yes, I have screamed nonstop, tried knocking myself out on a wall, there is a reason they are called "Suicide headaches"

 

I speak from a former (Due to ch) first responder and remote field medic training. Shock is huge in that case, funny thing about things like traumatic amputation or severe injury, once the incident has finished, the body tones or mutes the pain signals down. Beside the initial massive outset, the pain does not stay at that peak. Except when a brain and a nerve decide to say, hey lets crank this up and stay there.

 

Many neurologists and primary physicians are also seeing in CH sufferers ptsd, anxiety and depression.

 

I have had really bad heatstroke, the nausea, dizziness, disorientation, dehydration, and that to me is nothing like a cluster attack, have had a half broken tooth abscessed and that is nothing like a ch attack. 

It is bar none the worst pain I have ever experienced in my life to the point walking into traffic is something I have considered, hell I have literally begged my wife to take me out with a baseball bat. 

Maybe you have been 'lucky' I do not know or a huge pain tolerance but even the Kip scale, pretty much the accepted pain scale for ch lists a 10 as screaming, head banging, er, suicidal.

[Siegfried]

I tend to agree with Johncluster here. 

But anyway, my take on this is that it's normal that someone who don't have CH do not understand what it is and how painful it can be. I am also not expecting that from them as they don't have the condition. There are also many clusterheads saying: "Oh migraine is nothing, or CH is migraine x 1000" or similar nonsense, while most of these people even never got migraine so how do they know the difference so well ? In my experience I prefer the severe pain of a 1 hour CH attack EVERY TIME above the miserably sick and almost near-death feeling of the most serious migraine attacks I experienced that last 72 hours.  

I am quite open to talk about the condition I have and that is also how I explain it: "I have CH. It's a rare neurological condition existing of relatively short headaches that can be very painful. Pain is mainly in the eye and it goes away while breathing oxygen. but I have to deal with this nearly every day".  That's it, nothing more or less. What I then see is that most of these people are looking it up on Internet for themselves to get some more information or stumble on a video that shows what such an attack really is. Of course if you try to convince them at all cost how painful CH is and comparing it to the most grueling tortures, they will look at you like you are an idiot.

Best Regards !

siegfried

[MoxieGirl]

18 hours ago, johncluster said:

 That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened,    many people did , who had to endure this kind of torture as prisoners of war....

The pain is bad but compering it to gruesome  horror amputations is just insane,  way over the top.

You would basically fall into a shock from the pain,,,probably lose consciousness,  many times during the CH attack  and after 2-3 events like this, you would probably die from shock  or a heart attack ....

Suicide rate in CH sufferer would be 100%

Don't take in personally but , this would not help to in explain  to people what CH pain is.

My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion 

 

 

Hi John,

Yes, I do agree, it is a more extreme example. And yes, you're probably right about how one's body would react to such an amputation. Sort of. There is a museum here in London where they demonstrate how legs were amputated in the early 1800s, and it's really fascinating. And no, they didn't use pain killers, and the amputation itself didn't actually kill a lot of people. You are more likely to die from the post-surgery infection you got because the surgeons didn't was their hands or instruments. 

But, what I like about this analogy, is the utter terror it implies. You never know when 'the men' are going to turn up, and when they do, it's going to be extremely painful.

 

[MoxieGirl]

I did a pain survey of members of this forum, and our sister forum, a few years ago. I asked people to score a number of things based on their 1-10 cluster headache pain scale. 

I then pulled in all the results and averaged them, and the results are listed below.

But like BoF said, pain is subjective. A couple examples:

Kidney Stones ranged from 5 to 9, with 7 being the average. Personally, I'd the kidney stones I once had at a 5 compared to a cluster attack.

Broken bone ranged from 1 to 9, with 5 being the average. 

[johncluster]

I didn't say one traumatic experience would kill you ..But 2-3 a week, ,, If someone told me they could endure repeated amputations with a rusty saw for hours and hours more 2-3  times in their life  ,,,that would be the baddest toughest person   who ever lived,,,and we are not,,we are just people who are unlucky to have this ,,,It hurts like hell, makes a grown men cry,,,,,but still a mine blowing a soldiers leg is 10 time worst,,,many more nerves are damaged it is just simple biology .....I d rather we focus on treatment then pain level that almost looks like some competition or bragging right.

One who doesn't have CH doesn't really care how bad it is,,,their is no need to explain it to them ,,what for,,for pity? Our family members know it's bad ,,but why focus on pain level and its compression to something else  ,,,,it's just weird ..

 

 

Edited April 12, 2019 by johncluster

[MoxieGirl]

I agree, only in the BDSM world is your ability to take higher levels of pain a bragging right. The descriptions I write aren't meant to show how tough I am or how bad my clusters are, or even to scare people into believing they are worse than they are.

Yes, everyone experiences pain differently, what one person finds excruciating, the next person will brush off with little thought. 

Do we need to convince people who don't have clusters how bad they are? Yes, I think we really, really do. Have I gone over the top with that, clearly some people think so. 

I had a job awhile back where my manager bragged to me how he had only ever had one headache his entire life. Not even a migraine, just one headache. And this was at a time where I was getting signed off work for up to 7 days with a single migraine. He just didn't get it. He didn't understand how it was a problem and why it was affecting my work. So much so, that the company paid for me to see a headache specialist and get a proper diagnosis. Once I had that, he backed off. But he still didn't get it.

And that is one example of discrimination I received BEFORE I had clusters. 

I've often said, that if I could have a super power, it would be the ability to touch someone and give them a 5 minute cluster headache. Now, you might think that is harsh, but it is the only way people will understand it.

Short of that super power, I put my pain into words. Here is a description of one of my worst ever clusters. There is no exaggeration in this, this is how it felt, and is taken from my diary written at the time.

Quote

Wednesday, the 23 March 2011: I was having a bath. Nothing special, nothing out of the ordinary. Just a relaxing soak in a very comfortable tub of hot water and bubbles.

About three minutes into the bath, and with no warning what-so-ever, it felt as if someone had thrust a heavy, bevel-ended steel bar deep into my left eye socket. The bar was such a diameter it filled the entire space my eyeball used to fill, for it had forced my eyeball painfully out of the way. The steel was also cold. So very cold, it burned my flesh and bone, and felt like it went inches into my eye socket. Surely it was scraping my brain. 

Thirty seconds, maybe a minute passed, and it felt as if some imaginary person on the end of this imaginary bar began pressing down in an attempt to pry the top of my skull open. And even though the person and the bar did not exist, the pain and the imagery were all too real. Pressure built and intensified, radiating out from my eye socket in waves of electric shocks. 

I could feel, I swear I could feel, a crack forming across my forehead through the bone, starting at my left eye and expanding to my right temple. After some random period of time, that I could not measure, the pressure would ease, the electric shocks would fade away, and the crack would mend itself. The pain went nearly back to zero.

Only to be followed, a breath or two later, by the pressure and the shocks starting again. And, again the crack split open across my forehead. Each time reaching just a bit closer to my far temple.Then the pain would fade, and a breath or two later, start up again.

I could not move. I could not even pull myself out of the bath. All I could do was let my body hang over the side of the tub and cry.

A strange thing also occurred during this attack. In my mind, I split into two people. In my mind’s eye, I was the person in the bathtub, writhing in pain and agony. And at the same time, I was another me, standing, or perhaps floating, above the person in the bath. This second person was calm, and collected, and not in any pain what-so-ever. I stood there, giving myself encouraging words, reminding me to breathe through the pain, to be patient, it would end eventually. And when the pain did finally stop, some 30 or 40 minutes later, this me was still there telling the other me to get out of the bath, out of the now cold water. This second me knew that these attacks often come in pairs, and that I would be better placed on my bed, in a warm bathrobe, before the second one hit.

Even with myself begging and pleading for me to get up, it was another 5 or 10 minutes before I could move, to compose myself enough to find the towel on the floor and, shivering, get out of the cold water.

Thankfully, the second attack that came an hour later was minor in comparison. Only slightly more painful than a bad migraine and didn’t last nearly as long.

If memory serves, it took me about four hours to recover from that first attack. For most of that time, I lay on my bed, to shattered to get up and get a drink, to awake to sleep, just letting my cold wet body drip onto the bed. 

The pain had arrived in under 3 seconds, and when it left, it took a mere ten seconds to dissipate. I was left with a small residual headache, that finally left me once I managed to get a drink. These residual headaches are funny things though. They aren’t like a normal headache, but rather a vacuum of pain where the cluster attack took place. 

The part about where I was standing outside my body, looking down on me, is called Depersonalisation, and sometimes happens when someone is in an extreme situation. 

And lastly, I would say, if you don't like my descriptions, that's fine. Don't use them. But you can't say that isn't how I perceive clusters just because it isn't how you perceive clusters and think it's over the top. My clusters are not your clusters. 

Mox

[Chilly]

Difficult to read some of these as yes, very over the top.   Most of us I’m sure have managed to manage these brutal suicidal thought evoking episodes and attacks.  The first cycle is always the most difficult to explain to others, and deal with ourselves.  I’m not a migraine sufferer but still find myself quietly comparing to others that these are worse.   Slippery slope when comparing pain.  No other pain in my 47 years led to me smashing my head against the wall rhythmically, rocking back and forth in tears holding my head or not touching my head ouch, writing wills while not able to give a shit about anything or anyone  else I held dear.  5.5 years in since my first bout with episodics and still can’t explain these properly.  If you’re new here, please stick around.  You came to the right place.  Don’t give up.  

[ThatHurtsMyHead]

The reality is everyone has a different pain level from their CH.  They also have different pain tolerances.  I'm one of the people that have attempted suicide due to my CH.  When I get a K10, it IS a K10...  I've passed kidney stones and they were a walk in the park compared to my K10 attacks.  I've beat my head on the floor till I've passed out.  

Because some people with CH don't really get K10's doesn't mean others don't.  I wouldn't downplay any description.  Otherwise you shouldn't complain if someone just tells you to go take an aspirin when YOU have an attack.  (see the comparison?)

I've spoken with people that can't understand why some of us use indole ring hallucinogens to treat our CH.  They've said.  "CH isn't that bad.  Just wait till the attack passes".  "Why would anyone take an illegal substance to treat their CH.  It's not that bad"...   The examples go on and on.  To those people...  I seriously question if you really have CH.  I KNOW how bad mine was before I started self treatment.  I'd never go back to that world, or I'd be outa here if I did.

I think healthy debate is healthy.  Let's just not downplay someone else's description just because your pain isn't as bad as theirs.  You might wake up one day and find your pain IS as bad as theirs and reassess your own Kipp scale.  (I certainly hope not though).

Cheers,

J

[ThatHurtsMyHead]

Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation:  

I've broken my wrist before.  It was 10 at night and I didn't feel like going to the emergency room.  I decided to go to bed and go in the morning.  I went right to sleep like a baby 15 minutes after breaking it.  Slept fine got up.  Put my wrist in a tshirt sling and went to the emergency room.  My kipp level was maybe 3 out of 10.

I've de-gloved 2 fingers on my right hand in a sailing accident.  The index and middle finger had the meat pulled right off the bone.  My middle finger bone was sticking out like a skeleton you see at Halloween.  Of course both fingernails were peeled off as well.  We were docking a large boat and my fingers got caught in a cleat.  I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up.  I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere.  I finished securing the stern and port of the boat before showing my friend what happened.  He drove me to the emergency room where they reassembled my fingers.   Oh and without any anesthetic.  I'm immune to the anesthetic they use for nerve blocks.  My peak pain through the entire event was maybe a 4.  My pain tolerance is VERY high due to my years with CH I can only assume.

I've had 3 kidney stones.  Passed one of them.  Kipp 5 to 6.  Other two had surgery to remove and were maybe Kipp 3 tops. 

To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer.  My K10's are much worse.  Everyone is different, but pain is pain.  Support for our CH family here is what's its all about. 

J

 

[mit12]

To think that I had a doctor tell me that I need to hide the pain from my wife because it upsets her? 

[MoxieGirl]

J,

Thanks for the real world descriptions of this pesky little thing called pain. 

There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. 

Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. 

But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. 

Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. 

But it is what I think makes Clusters uniquely extreme.

Mox

[xBoss]

The word headache is the wrong word. It lumps us with the rest. Proper terminology would be something like Brain on fire syndrome then they would take us serious!

[Into Light]

On 4/11/2019 at 9:04 PM, johncluster said:

 That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened,    many people did , who had to endure this kind of torture as prisoners of war....

The pain is bad but compering it to gruesome  horror amputations is just insane,  way over the top.

You would basically fall into a shock from the pain,,,probably lose consciousness,  many times during the CH attack  and after 2-3 events like this, you would probably die from shock  or a heart attack ....

Suicide rate in CH sufferer would be 100%

Don't take in personally but , this would not help to in explain  to people what CH pain is.

My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion 

 

 

I just say indescribable pain and leave it at that because it’s indescribable.

[Into Light]

On 4/16/2019 at 3:14 PM, mit12 said:

To think that I had a doctor tell me that I need to hide the pain from my wife because it upsets her? 

Doctors, like people, are mere individuals. And, like people, range from brilliant to dumber than a rock.

[Rod H]

For me a kip 10 is 1 foot of 3/8" rebar heated up to nice cherry red and pushed through my skull to my left eye down to my left rear gold molar. And every 5 seconds tapped with a 12 oz tack hammer.

Edited May 1, 2019 by Rod H
Grammar

[MoxieGirl]

Here's a comparison I use between Headache, Migraine and Cluster.

 

[xBoss]

On 4/30/2019 at 10:19 PM, Rod H said:

For me a kip 10 is 1 foot of 3/8" rebar heated up to nice cherry red and pushed through my skull to my left eye down to my left rear gold molar. And every 5 seconds tapped with a 12 oz tack hammer.

The molar pain struggle is real. 

[Freud]

On 4/12/2019 at 4:40 PM, johncluster said:

I didn't say one traumatic experience would kill you ..But 2-3 a week, ,, If someone told me they could endure repeated amputations with a rusty saw for hours and hours more 2-3  times in their life  ,,,that would be the baddest toughest person   who ever lived,,,and we are not,,we are just people who are unlucky to have this ,,,It hurts like hell, makes a grown men cry,,,,,but still a mine blowing a soldiers leg is 10 time worst,,,many more nerves are damaged it is just simple biology .....I d rather we focus on treatment then pain level that almost looks like some competition or bragging right.

One who doesn't have CH doesn't really care how bad it is,,,their is no need to explain it to them ,,what for,,for pity? Our family members know it's bad ,,but why focus on pain level and its compression to something else  ,,,,it's just weird ..

 

 

You couldn’t be further from the truth. I’ve suffered many medical problems. From having 22% of my body badly burned spending 6 months in the hospital having your skin and flesh peeled off every day down to bloody healthy tissue ( and I begged god to take me in my sleep every night) to having my hand and arm mauled by a dog and getting infected requiring multiple surgeries. All in all I’ve had over 25 surgeries from the age of 14-40 and the last 2 years with chronic CH doesn’t even compare. I’d rather have my skin and flesh picked off for hours a day then suffer with the 4-8 attacks I’m currently getting. But I agree with others here no one can compare their pain to yours and visa versa. It is well established that CH is the worst pain in medicine. May be you’re lucky and the CH you may or may not have ( its unclear to me from the sum total of your two user names and comments that you have the same thing as many of us). But I don’t judge, you shouldn’t either. 

[xBoss]

I don't even suffer as bad as most and CH still makes me cry. I have never cried over any injury in my adult life including broken bones.

Edited May 4, 2019 by xBoss

[Freud]

I’m with you on that one, broken bones don’t even compare. This ch shit is downright wicked.