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

The Real Gamer

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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.
This statement is both extremely insensitive and wrong on so many levels I don't even know how to respond...

EDIT: @frotaz he probably found this thread on accident or something on Google. The numbers say that approximately 1 out of every 1,000 people suffer from cluster headaches to varying degrees. Check the amount of views this thread has. If the approximations are correct then the chances of someone with cluster headache coming across this thread isn't nearly as unlikely as you think. Based on his join date it looks like he joined just to respond to this thread, which was awesome btw.

EDIT2: Random fact- if you Google "most painful sensation" this thread is the 4th link from the top.
 

Luigitoilet

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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.
What are you suggesting?
 

rsr2

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Wow I found this thread so fascinating. I never knew this existed and it just blows my mind that this even does exist. I have had two toe nails removed (one with improper anesthesia) and I consider that the worst pain I have ever experienced and I have broke several bones in my life.

But this takes it to a whole new level. I can't imagine knowing that someone suffers far worst pain than my toe nail removal but everyday.

Cory, you and everyone that suffers this are strong people and I really hope there is a cure soon. It makes me cringe just thinking that you go through so much pain.
 

Pythag

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My great uncle used to get these. I've read up on them many a times. Absolutely astounding how much pain it causes them.
 

SinisterB

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Yeah, I remember way back in 8th grade I told my teacher I wanted to go home because my "eyes hurt". He looked at me like I was ******** and questioned it a little bit, but he let me go.

Thanks teach. :awesome:


The pain really is excruciating. Mine only last about 30 seconds though if that, thank ****.
 

Luigitoilet

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Yeah, I remember way back in 8th grade I told my teacher I wanted to go home because my "eyes hurt". He looked at me like I was ******** and questioned it a little bit, but he let me go.

Thanks teach. :awesome:


The pain really is excruciating. Mine only last about 30 seconds though if that, thank ****.
That doesn't sound like a cluster headache at all.
 
D

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Thank you clustersuffer for sharing your experience on it. It is very valuable to us.
 

Diddy Kong

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It's a pain relieving herb. I am no doctor, but if I where in their situation I'd want to experience less pain. Would maybe not be the ultimate cure, but a relief nonetheless. Sorry for the truth.

:phone:
 

Luigitoilet

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weed doesn't even touch a bad hangover headache. it's a laugh to suggest it to someone having a cluster headache.

oh yeah, and also it's against the rules to talk about so let's shut up ok
 

Teran

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Listen to LT, talking about illegal substances is pretty much always against the rules save for some very special circumstances.

Advising their use is something that is absolutely NOT on and I really don't think you should continue on the subject.
 

R h y m e

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My mother used to have these when she was 18 or 19 and they just "went away" according to her. She once had one so intense that she had to huddle in a dark corner, unable tell you her name. I have frequent corneal headaches but they have nothing on this.
Serious ****.
 

The Real Gamer

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My mother used to have these when she was 18 or 19 and they just "went away" according to her. She once had one so intense that she had to huddle in a dark corner, unable tell you her name. I have frequent corneal headaches but they have nothing on this.
Serious ****.
I've read that some cluster headache sufferers eventually just stop getting the attacks after a while for reasons still unknown. Glad your mom was able to recover!
 

Vinylic.

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I was going to say that weeks ago but, I was a little worried that it might've been false.

It's good to know that it is somewhat legit now. And it's good to know that your mother is alright, Rhyme.
 

Mrs. Bahamut

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I am surprised to hear that so many people haven't heard of a cluster headache. The difference is for me, I guess, is that I'm constantly surrounded by the medical field. I feel that more people are using the term "cluster headaches" when they don't actually have them.

The worst pain I had was the ninth month of pregnancy when Mini Baha went external to my rib cage. Usually the baby is supposed to stay inside the rib cage for some support. But because he was frank breech (head up as well as feet up), he wasn't properly positioned and I had immense pain for a month. When it came time for the c-section, the anesthesiologist told me not to look at the needle. I laughed and told him that I wanted to see the thing that would make the pain go away. I felt better immediately after he was taken out and even after the surgery (when a crappy nurse didn't give me my pain meds all night because she thought I "looked peaceful sleeping") I felt so much better. Here's a pic for those of you interested. You can see his face on the left and his foot on the right. I couldn't imagine the pain I was feeling in my head. I feel like head pain is worse than any other.

 

ClusterHeadSurvivor

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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:



Pain description (also from Wiki):



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)



General cluster headache information:

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.

Thank you for posting this. The first video....is ME.I made the video in Jan 2009. Just shortly after I decided not to commit suicide and live.
They call this the suicide headache fr obvious reasons. Many of us have tried or thought about it. 3x I been personally contacted. 3rd time gun jammed and he deicded to live.
I am sick./disabled. I spend my days now blogging, twittering and helping others who suffer alive globally.
I am 41, married.I also survive migraines, tension headaches, and lots of other stuff.
I have read alot of comments. And its true, the disease needs more awareness. There is no cure. There is band aids out there but no cure.
I have had 4 brain surgeries.
Here is my blog.
www.clusterheadsurvivor@blogspot.ca
"ClusterHeadSurvivor" is my YouTube page
@ClusterHeadTom is twitter account.

I been labelled by many as the poster child for the disease. Im ok with that.
I am happy to answer any questions and some I may just direct you to my blog because the answer will be so long...
Please keep questions related to the disease.
Yes I have had an incredible life, know and me many famous people and done some really cool stuff.
But in all honesty Its my wife and kid who keep me going.
Suicidal thoughts are not depression. Pain, this excurciating does things to people. It changes you.

Let the questions begin. Please be respectful and know my answer is my choice not your decision. thank you
 

The Real Gamer

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What a coincidence I was JUST thinking about this thread a few weeks ago!

Clusterheadsurvivor before I ask my questions I just wanted to let you know that you're a real hero for dedicating your life to spreading awareness about the condition and living life for your wife/kid despite how bad things get for you at times. There's a lot of people out there who could learn a thing or two about courage and resolve from you.

Questions:
1) How often do you suffer from cluster headache attacks?
2) How long have you suffered for?
3) Are there any types of pain meds that you take to help alleviate the pain? Or perhaps you use oxygen? How do you cope with the pain in general?
4) Could you personally describe the sensation of a cluster headache and how painful it really is?
5) Has you gotten used to the pain in any way since you've experienced so many cluster headaches? Or has the pain only gotten worse overtime?

I wish you nothing but the best in your journey to spread awareness! Stay strong!
 

XTheElegantShadowX

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Oh my. And I thought that my headaches were severe. :I

Hopefully someone, somewhere will find a cure for this disease, it really is a shame that some people have to experience such intense pain on a regular basis.
 

fitzawesome

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I'd heard about this before but seeing it in those videos. Damn I can't even imagine. I had tooth aches a few years ago before I got a bad tooth pulled, the pain was unbearable everything else in the world disappeared during them. There was nothing but me and the pain but this, this just seems a thousand times worse than even that.

I can't even begin to imagine the loneliness and torture they suffer through during an attack. I hope they find a cure for this very soon. Nobody deserves to go through that.
 

The Real Gamer

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Just looked up videos of female cluster headache sufferers since the disease is more common among men:
http://www.youtube.com/watch?v=raCnH6BPdKM
http://www.youtube.com/watch?v=wRXnzhbhpHU

I had to hold back tears... It's just not fair that there are good people that have to suffer like this on a consistent basis. Someone NEEDS to find a cure.

Overall I'm glad I made this thread as a tool to help spread awareness. Hopefully if more people are aware of this disease more people will be willing to help.
 
Last edited:

ClusterHeadSurvivor

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My life is advocacy not pity seeking.
Yes it sucks beyond all measurable words. But its so hard to really to have anyone comprehend what we go through day to day.
At age 41 now Ill never work again., I am fatigued most of the time , lost all my friends who were close to me. Unable to work, verge of brankruptsy. I have serious side affects from my 4 brain surgeries aside from the fact I spend my days reaching out to others in pain helping them live positive andhelping people realise life is a gift and blessings.
There is no doubt I and many others have been dealt some really crappy cards in lfe. But its how we choose to play them. I wak eup everyday smiling. Making jokes ( i am comedic) and doing hte best I can to lead a normal life as abnormal as it is. My wife is bi polar and she struggles to pay for us not just mentally but physcially it takes a toll on her. My son has Elhers Danlos Syndrome which affects every second of his life and now he struggles with Migraines and tension headaches as I. I just pray he doesn\t get Cluster Headaches too. We rescued a dog last year and he has been our main focus bringing him back from near death.

Please feel free to share share my story or CH with as many people as you can. Its very important for us survivors to educate the world.
www.clusterheadsurvivor.blogspot.ca.ca
@ClusterHeadTom on twitter
ClusterHead Survivor on Facebook (space after Head and Survivor only)
"ClusterHeadSurvivor" (no spaces) on YouTube is my page

thank you very much
 

PantyFleas

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Hi folks, my name is Tim and I have has cluster headaches since 1997(Episodial).
I am not sure how I stumbled across this forum, but noticed that many of you are sympathetic to our condition and want to know more about it. So I decided to become a member here and share my story.
Before I continue, if you want to see testamonies and read more about this condition, go to www.clusterheadaches.com. My name there is TimInTexas. We are a world wide support group for fellow sufferers. Here is my description of my cluster headaches.
There are two pains going on during an attack: deep throbbing pain and a searing sharp pain just behind your eye. The attacks are sudden, however, we feel them coming on. A tingling sensation very much like a sneeze coming on. This is when we prepare ourselves for the immenient pain to come.
The tingling pain starts at the back of our head(head aches are always on one side) and slowly embeds itself behind our eye. As it makes it's way behind our eye, the pain increases very quickly. (This is the sharp and worst part of the attack) To put this pain into perspective.....it's much like getting a lot of water up your nose.....but a thousand times worse and doesn't let up so fast. This pain behind your eye is the first to set in and the last to leave.
Once the pain settles in behind your eye, it begins to get hot and begins to increase to a level that you can't imagine. At this point, the second part of the head ache comes......the pounding.
Many of you, I'm sure, have had a pounding migraine before. This much like that, but only horribly worse, because Migraines seem to come in waves and let off at times. Not Clusters. The pain only continues to grow. Most clusters I've had stay within 7-8 on the klp scale *see clusterheadaches.com. However, about one in five hit 9 or 10.
The pain becomes unbearable within 10 minutes and pain management at this point is an illusion. You are usually in some kind of fetal position, hand covering eye, other hand over head and rocking. Many people scream and hit their heads. This is just not an option for me. As I have a 5 year old son who I don't want to see me like this. I hide in my dark closet and try to remain as quiet as possibly. This is my sanctuary. I have it set up with a stool and pillow to scream in (when they reach that point).
During an attack, you will sweat like a pregnant nun. It will feel like you are so hot, that it's superhuman.
An attack will sustain its peak (intensitity always varies) for about 45 minutes to up to 2 hours. I know when relief is coming when I begin to feel my body start to cool down.
Once the pain is at a reasonable level, I get out of my sanctuary and begin to cry out of relief. It's finally over!

Or so you think. Cluster Headaches can hit you over and over again for hours. Each time leaving you exhausted.
Last night I got hit with 8 of then starting at 8:21pm and ending at 7:49ish Am.

The true heroes are our supporters who have to deal with us in this condition. For me it's my amazing fiancée and son. I try not to let my son see me like that, but he does have to be quiet and leave me alone.

There is nothing anyone can do to help ease the pain of the suffering, and it's hard for loved ones to understand. For me, my fiancée and I have devised a routine.

Once I retire to my sanctuary: don't talk to me, don't touch me, stay out of the closet PERIOD, don't turn on the light, and be as quiet as possible.
This may seem harsh and demanding, but we had to develop this routine the hard way.

I honestly don't know how or why this woman lives with me. She is my hero!

I hope this helped you guys and gals better understand our condition and thank you for showing a real concern for us.

If you have any questions for me, feel free to ask. Until then.....happy gaming!
 

PantyFleas

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T
1. everyday,sometimes several times a day
2. since Jul 25,2005
3. no meds, O2 don't work and I just preservere
4. http://www.clusterheadsurvivor.blogspot.ca/2013/01/inhumane-pain-explaining-cluster.html
5. i Have had easily over 10,000 attacks ad logged over 16,000 hours. You never get used to it.
Thats right, you never ever get used to it. No drug (at least not any I've tried) will even take the edge off. However, in my current cycle, I am experimenting with the water treatment and D3. It has certainly disrupted my cycle, and made attacks less severe.....but certainly not prevented or aborted anything.
 

PantyFleas

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This statement is both extremely insensitive and wrong on so many levels I don't even know how to respond...

EDIT: @frotaz he probably found this thread on accident or something on Google. The numbers say that approximately 1 out of every 1,000 people suffer from cluster headaches to varying degrees. Check the amount of views this thread has. If the approximations are correct then the chances of someone with cluster headache coming across this thread isn't nearly as unlikely as you think. Based on his join date it looks like he joined just to respond to this thread, which was awesome btw.

EDIT2: Random fact- if you Google "most painful sensation" this thread is the 4th link from the top.
It's ok, let Mike say what he wishes. We cluster heads deal with this daily.
 

The Real Gamer

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This now makes 3 cluster headache sufferers that have come across this thread and made accounts to respond. :)

Thank you very much for the informative post PantyFleas. You're a hero for continuing to fight for you wife and kids. Kudos to you!

Could you elaborate a bit on your water treatment that you're receiving? Does it somehow lessen the pain of the cluster attacks?
 

PantyFleas

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This now makes 3 cluster headache sufferers that have come across this thread and made accounts to respond. :)

Thank you very much for the informative post PantyFleas. You're a hero for continuing to fight for you wife and kids. Kudos to you!

Could you elaborate a bit on your water treatment that you're receiving? Does it somehow lessen the pain of the cluster attacks?[/quote Sure Gamer. The water treatment is simple yet difficult and doesn't work for everyone. During the day drink a glass of water every half hour. When you get an attack, drink 2 more glasses of water. For some people, this will make attacks less severe and rumor has it.......will end your cycle sooner. I don't know why this is supposed
 

PantyFleas

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I'm not entirely sure how it's supposed to help and it doesn't work for everyone, but here it is. The Water Treatment is simply drinking a glass of water every 46 minutes. When attacks come, down two glasses.
It's supposed to make attacks less intense and make cycles smaller. I've only just begun to try this and my cycle just started. So I can't tell you if it's working for me yet. But I can say that this cycle is different from the ones in my past.
 

PantyFleas

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Another thing you need to understand about CH's is that every bodies headache is unique. No two people are just alike. This is why they don't have universal medicines like they do for migraines.

One of the horrible things about them are the mental aspects. They usually come at the same time daily, however, "rogues" can always and will hit you out of the blue. It sucks being at family gatherings and places like that because people try to help you but don't understand. We know that they love us and are only trying to help.

Fear of going to sleep often leads us to depression. It's like Nightmare on Elm Street. We are terrified to go to sleep because we know what is coming. Waking up in the middle of the night and being dominated by the beast.

Knowing what a burden you have become on your family will begin to take its toll after a couple of months.

They are caused by a nerve becoming inflamed. I'm not going into the name and location because I would only lose you. Go to www.clusterheadaches.com and read up. There is a wealth of information there.

One of the more painful things to know about these, is to know they get children too. Read the forums, they make me cry every time without fail.
 

Conradd Copperfield

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Have you tried using medical cannabis while having a severe migraine? This got me curious because i've came across this one article about a medical marijuana strain here in https://www.bonzaseeds.com/blog/707-headband/ .. It gives you plifting sensation surges into the mind and the body which promotes a sense of happiness. What are your idea about this?
 

traceybanny

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Alternative medicine are more accepted now a days due to it's promising results unlike pharmaceutical medicine, alternative medicine don't give negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. Different strain has a variety of uses and effect depending on your needs. You may check this https://www.gyo.green/bomb-seeds-thc-bomb-bob-thc-f.html
 
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