The most painful sensation known to man (the cluster headache)

[The Real Gamer]

So here I am randomly Google'ing stuff on the internet out of boredom, and for whatever reason I decided to search "the most painful sensation ever." The search results mostly pointed to the same disease, known as the cluster headache (also known as the suicide headache). After a bit of research I've decided to share my findings with the rest of you because I find the disease absolutely fascinating... albeit quite horrific. My mind just can't even comprehend how there are people that choose to go through life while having to deal with this utterly disastrous condition. Perhaps this info will help every one of us appreciate our everyday lives just a little bit more? Without any further adieu...

Wiki definition:

Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain in the head. Cluster headaches occur periodically: spontaneous remissions interrupt active periods of pain. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women.

Pain description (also from Wiki):

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."

-Dr. Peter Goadsby, Professor of Clinical Neurology at University College London

Youtube videos of the cluster headache in action: (WARNING- These videos display victims in extreme pain and are at times hard to watch... not for the sensitive)

male sufferers
http://www.youtube.com/watch?v=fNouKvGCqIM&feature=fvsr
http://www.youtube.com/watch?v=UzpcPeoPnW0
http://www.youtube.com/watch?v=LAf_QFmTPkw
female sufferers
http://www.youtube.com/watch?v=raCnH6BPdKM
http://www.youtube.com/watch?v=wRXnzhbhpHU

General cluster headache information:

http://en.wikipedia.org/wiki/Cluster_headache

So what do you guys think? I really wish there was some way to cure these people. Nobody deserves to constantly endure this kind of pain. I wish the best for all of them.

 

[Pikaville]

That is nuts.

I occasionally get major 2-4 hour headaches from having an orgasm.

It hasn't happened in over a year though.

This sounds a million times worse though.

 

[#HBC | ZoZo]

Wow this sounds intense : o

Nice sharing of info :3

 

[GunmasterLombardi]

Why haven't I heard of this before?

 

[Deleted member]

interesting. I'll skip the videos for now but I can guess what I would see.

0.1% is 1/1000 people:

Why haven't I heard of this before?

that would mean about 800 people in my city alone would suffer from this disease, how come this isn't a well known thing?

 

[Spelt]

I get severe migraines occasionally, which are already terrible enough, but now at least I can be thankful I don't get these...

 

[z00ted]

This is awesome.
Not like getting the headache itself, I feel terribly sorry for these people.

It's just awesome knowing that kind of pain exists.
Hopefully a cure is found.

 

[Diddy Kong]

I want to go over there and give these people the biggest fattest spliff they've ever smoked. This is just horrible.

 

[Roboturner]

What about a cluster headache and a kidney stone at the same time?

double whammy

 

[Chii~]

Wow, that sounds like it kind of extremely sucks.

Comparing headaches to giving birth is kind of um, but either way there really should be a cure. :l

 

[Chronodiver Lokii]

There are worse pains than birth
Like breaking your femur for instance....especially since your femur can withstand crazy impacts and force

Ouch this sounds really painful. Here's to hoping a cure can be found >___<

 

[-ShadowPhoenix-]

After reading this i feel like a baby for complaining when i get a mild headache

 

[z00ted]

I actually just want to experience one of these if they aren't known to kill you or anything.
Just once, though.

 

[RATED]

now when women start *****ing about their Period, show them this.


-----------------

on a serious note: I didnt knew about this and damn it seems horrible to be able to live with this all your life.

 

[The Real Gamer]

interesting. I'll skip the videos for now but I can guess what I would see.

0.1% is 1/1000 people:



that would mean about 800 people in my city alone would suffer from this disease, how come this isn't a well known thing?

That's exactly what I was wondering when I first read about it. I'm just guessing that the numbers are somehow skewed.

Glad people are taking interest though!

 

[Wizzrobe]

This must be awful. I feel so bad for anybody with this disease...

 

[Pikaville]

I want to go over there and give these people the biggest fattest spliff they've ever smoked. This is just horrible.

That would totally sort them out too.

Best medicine.

 

[ShroudedOne]

I couldn't make myself watch these with the sound on. It was just impossible. I can never complain about a minor headache again. I hope that some sort of help is found for this...

 

[infiniteV115]

The Real Gamer
You have the COOLEST sig I've ever seen. <3

Oh, and very interesting thread too XD

 

[The Real Gamer]

I couldn't make myself watch these with the sound on. It was just impossible. I can never complain about a minor headache again. I hope that some sort of help is found for this...

Completely understandable. Watching a grown man start crying like a baby in the last video at 4:45 was almost too much for me to watch. A lot of the victims have said the psychological pain is even worse than the physical... They're constantly depressed and paranoid over when their next attack will come. Sounds like a life a pure torture to me.

Apparently LSD and other illegal drugs help to significantly numb the pain but many cluster headache victims absolutely refuse to use them out of personal pride or whatever. Oxygen also helps to slightly numb the pain, but even that isn't enough for the pain not to be excruciatingly painful (as displayed in the second video).

The Real Gamer
You have the COOLEST sig I've ever seen. <3

Oh, and very interesting thread too XD

Thanks! I randomly ripped it off of another website while it was still new. :3

 

[clustersufferer]

I just wanted to thank you for this thread. I have suffered from cluster headaches for over a decade and I appreciate how misunderstood this disease is. It takes many sufferers years to get a proper diagnosis and there are no drugs specifically designed for cluster headaches.
Just a bit of additional info. There are 2 types of cluster cycles episodic and chronic. The episodic (which thankfully is what I have) is the more common where you can have between 1-8 attacks per day for a few weeks and then periods or remission. The 2nd type is chronic. There is no remission, you may not have the frequency of attacks but you they never go away. For some this lasts for years.

My typical cycle lasts 6-8 weeks, starting at 1-2 attacks per day, peaking at 8 attacks, then slowly tapering off. The other issue is the intensity. At the beginning of the cycle attacks last 15-20 minutes and at the peak some can last 2 hours usually hitting in the middle of the night.

I just wanted to provide a little context to the conversation. Hopefully what I have posted helps.

Cory

 

[The Real Gamer]

I just wanted to thank you for this thread. I have suffered from cluster headaches for over a decade and I appreciate how misunderstood this disease is. It takes many sufferers years to get a proper diagnosis and there are no drugs specifically designed for cluster headaches.
Just a bit of additional info. There are 2 types of cluster cycles episodic and chronic. The episodic (which thankfully is what I have) is the more common where you can have between 1-8 attacks per day for a few weeks and then periods or remission. The 2nd type is chronic. There is no remission, you may not have the frequency of attacks but you they never go away. For some this lasts for years.

My typical cycle lasts 6-8 weeks, starting at 1-2 attacks per day, peaking at 8 attacks, then slowly tapering off. The other issue is the intensity. At the beginning of the cycle attacks last 15-20 minutes and at the peak some can last 2 hours usually hitting in the middle of the night.

I just wanted to provide a little context to the conversation. Hopefully what I have posted helps.

Cory

:O

This is the most amazing response to any thread I've ever made since I've been a member of Smashboards! I'm so glad I made this thread now I seriously wish there was something that could be done for people with this condition. No matter how bad things get just never forget that there are good people out there searching for a cure! I'm positive one will be found some day.

Wow I never thought an actual cluster headache sufferer would read this thread. Could you perhaps describe the cluster headache sensation for us since you know about the pain firsthand?

 

[Luigitoilet]

I just wanted to thank you for this thread. I have suffered from cluster headaches for over a decade and I appreciate how misunderstood this disease is. It takes many sufferers years to get a proper diagnosis and there are no drugs specifically designed for cluster headaches.
Just a bit of additional info. There are 2 types of cluster cycles episodic and chronic. The episodic (which thankfully is what I have) is the more common where you can have between 1-8 attacks per day for a few weeks and then periods or remission. The 2nd type is chronic. There is no remission, you may not have the frequency of attacks but you they never go away. For some this lasts for years.

My typical cycle lasts 6-8 weeks, starting at 1-2 attacks per day, peaking at 8 attacks, then slowly tapering off. The other issue is the intensity. At the beginning of the cycle attacks last 15-20 minutes and at the peak some can last 2 hours usually hitting in the middle of the night.

I just wanted to provide a little context to the conversation. Hopefully what I have posted helps.

Cory

Thanks for sharing! This is a very fascinating subject and my heart goes out to you. I can't imagine what it's like and I hope I never know.

How old were you when they started? Do they ever happen in horribly inconvenient times like driving a car or otherwise out in public?

 

[jugfingers]

I've heard of a lot of people using mushrooms (the magical variety) to relieve cluster headaches acutely and to increase the length of their cycles.

heres an old study regarding psilocybin and lsd.

http://www.neurology.org/content/66/12/1920.abstract

 

[theeboredone]

My god, those videos...that's really hard to watch. Thanks for finding this TRG.

I wonder if Cory found us when he googled something along the lines of "clustered headaches" and one of the results was this topic? Doesn't matter, but just curious.

Is it wrong to say that, if there was a way, I would want to experience this kind of pain for a moment to know what these people are going through? Kinda like how it feels to be drunk when you put on those beer goggles.

 

[SSBMLahti]

I don't even know what to say.

 

[Vinylic.]

This is immensely tough for me to discover this horrible disease.
I would never want anyone to live through like this.

I wish, with all my heart and soul, that someone would find a way to end it.

 

[clustersufferer]

Hi Again. Busy day sorry I didn't reply sooner. I started getting them when I was 26 out of the blue. Had CT scans and MRI to rule out brain tumor etc. My 1st few cycles were short - couple of weeks at a time. My last cycle for comparison was over 2 1/2 months.
As to describing the pain - as you have read it is excrutiating and debilitating. It is hard to describe the pain in a way that others can relate too because I have never experienced a similar level of pain in any other way (and I have broken my ankle and my wrists, tore a knee ligament and had appendicitis. My typical attack happens while I'm asleep usually within 2 hours, but if I'm awake and if you were watching me you would see a few physical changes in me. My eye on my right side (where all my attacks take place) goes blood shot moments before an attack, my eyelid begins to droop and my nose sometimes runs. The pain then begins. It is a piercing pain behind my eye like someone is jabbing a red hot knife through the nerve. You want to yank your eyeball out to get at it. I also get pain at the back of my neck on the nerve at the base of the skull which is not typical. I tend to rock back and forth in a seated position (you can not sit still during an attack) and sometimes use a hard rubber ball to bang against my temple. I tend to sweat pretty hard and both my eye and nose discharge a lot. DO NOT touch me when I'm having an attack as I may just smack you!
I use a couple of meds verapamil which lowers blood pressure to lower the pain intensity and Imitrex that is an abortive (you take it on the onset of an attack). There is no preventative drugs though some have had surgery to sever the trigeminal nerve (the nerve that is misfiring) though success is not 100% New therapies include a pacemaker like implant that send electrical impulses to the brain regions thought to be causing some of the issues.
One of the most common therapies is Oxygen - breathing a high flow of O2 at the onset of an attack. I have tried it with limited success - it is not very convenient to carry an air tank around. The are many that use mushrooms and there are studies that show LSD is effective on clusters but at this time you take them at your own risk.
I don't drive much during a cycle as I don't want to risk hurting others, though I know when my attacks will happen (usually at the same time roughly each day) and I have made short trips to the pharmacy or doctor.
I have had them in public places many times I usually try to find a quiet place though I have freaked people out by my screaming and crying during an attack. Probably hardest at work because they know what I have - I've been open about it - but I work for a bank and obviously the swearing and banging of my head is not very professional and it creates a tense work environment.

Hope helps a bit more. Thanks for reading my posts.

 

[SSBMLahti]

I was talkign to a guy today that actually took mushrooms, and participated in a medical experiment involving LSD's effects, and he said it they a tremendous effect on him, and helped quite a bit.

I know taking these is out of the question for many people though.

 

[Luigitoilet]

One of the youtube video guys is a chronic victim of cluster headaches and he outright refuses to take any illegal drugs that may help him.

to me, that is just insane. if the pain is really so horrible and unbearable you would think someone would not even consider the legality of a chemical.

but then again, I imagine tripping on psychedelics during a cluster headache would be one of the most spiritually and physically draining things a person could experience.

and actually if I recall, most research concluded that it wasn't LSD specifically that aided with cluster headaches, but some other non-psychedelic variant of ergot

 

[Mota]

Very informative.
This disease sounds absolutely insane, having this and the knowledge of unimaginable pain being inevitable would be torturous.

I wonder if a person diagnosed with this would then have a higher pain threshold.

 

[The Real Gamer]

Hi Again. Busy day sorry I didn't reply sooner. I started getting them when I was 26 out of the blue. Had CT scans and MRI to rule out brain tumor etc. My 1st few cycles were short - couple of weeks at a time. My last cycle for comparison was over 2 1/2 months.
As to describing the pain - as you have read it is excrutiating and debilitating. It is hard to describe the pain in a way that others can relate too because I have never experienced a similar level of pain in any other way (and I have broken my ankle and my wrists, tore a knee ligament and had appendicitis. My typical attack happens while I'm asleep usually within 2 hours, but if I'm awake and if you were watching me you would see a few physical changes in me. My eye on my right side (where all my attacks take place) goes blood shot moments before an attack, my eyelid begins to droop and my nose sometimes runs. The pain then begins. It is a piercing pain behind my eye like someone is jabbing a red hot knife through the nerve. You want to yank your eyeball out to get at it. I also get pain at the back of my neck on the nerve at the base of the skull which is not typical. I tend to rock back and forth in a seated position (you can not sit still during an attack) and sometimes use a hard rubber ball to bang against my temple. I tend to sweat pretty hard and both my eye and nose discharge a lot. DO NOT touch me when I'm having an attack as I may just smack you!
I use a couple of meds verapamil which lowers blood pressure to lower the pain intensity and Imitrex that is an abortive (you take it on the onset of an attack). There is no preventative drugs though some have had surgery to sever the trigeminal nerve (the nerve that is misfiring) though success is not 100% New therapies include a pacemaker like implant that send electrical impulses to the brain regions thought to be causing some of the issues.
One of the most common therapies is Oxygen - breathing a high flow of O2 at the onset of an attack. I have tried it with limited success - it is not very convenient to carry an air tank around. The are many that use mushrooms and there are studies that show LSD is effective on clusters but at this time you take them at your own risk.
I don't drive much during a cycle as I don't want to risk hurting others, though I know when my attacks will happen (usually at the same time roughly each day) and I have made short trips to the pharmacy or doctor.
I have had them in public places many times I usually try to find a quiet place though I have freaked people out by my screaming and crying during an attack. Probably hardest at work because they know what I have - I've been open about it - but I work for a bank and obviously the swearing and banging of my head is not very professional and it creates a tense work environment.

Hope helps a bit more. Thanks for reading my posts.

Thank you so much for making time to share your information with us!

I really, really hope a cure is found soon, but until then never forget to keep fighting! I'm sure I can say on behalf of everyone else here that you have our best wishes.

 

[z00ted]

Wow Cory, that was really informative and interesting to read about.
You are a really strong person for being able to live through all of that every day of your life.

I honestly don't think I could.

 

[Chronodiver Lokii]

Thanks for sharing your situation Cory! It's awful that you and others have to go through such awful bouts of pain

I wish you the best and hope the medical field will soon be able to find a way to help you and others!

 

[Vinylic.]

A piercing pain behind the eye.

I feel like saying something about that but I can't describe it clearly.

Cory, hope things go well soon.

 

[Crimson King]

The doctor I see thinks I either have these, severe sinus headaches, or just really really bad migraines. I am taking migraine meds right now, and it levels me to the point I sleep. If these are not clusters, I never want to experience that because I get dizzy, experience nausea, and the pain is pretty substantial, but it fits all the symptoms of migraines/sinus headaches.

The worst pain I had was after my eye surgery when the anaesthesia gave me a reaction. Imagine having your head feel like it was hit with a bat, repeatedly, and you are so nauseous that you vomit if you ingest anything, and the vomiting causes your head to throb again. Now, multiply that by three days without relief. That sucked. A lot.

 

[SinisterB]

Wow, I had no idea this existed.


It seriously sounds like I have a very mild case, the symptoms all sound familiar. I've always been so clueless as to why I get random "pulses" in my head and eye pain. I guess i'm lucky it isn't so bad, but things make so much sense now.



Damnnnnnnn

 

[Jonas]

If it isn't the most painful thing you have ever experienced, if the pains don't strike with clockwork regularity and if migraine medicine helps, I don't think it's the clusters.
Also nausea isn't one of the usual symptomes of clusters.

But then I'm lucky enough not to have this condition, and I'm no doctor, so I wouldn't know :/

 

[Luigitoilet]

No. The most painful sensation for man is grief. Many commit suicide due to that, more than they do when this cluster headache occurs, which is just like any pain, which goes away after a while.

**** you. There are people who have several of these attacks every day of their life. Also **** you for oversimplifying suicide and mental anguish such as grief.

 

[frotaz37]

Something about this thread seems off. I mean come on, clustersufferer as a smashboards user name? Did he make the account just for this thread? If so, how did he find this site? Did it pop up on Google when searching for cluster headaches? I just don't get how any of this is happening.