Worlds Most Painful Disease trigeminal autonomic cephalalgia aka Suicide Headaches

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ClusterHeadSurvivor : I encourage evevery one to read the description first before replying. I do appreciate all comments, thank you

RawBeautyKristi : I have been suffering *suffering doesn't feel like a big enough word* with these debilitating and horrific "headaches" for years. I can never truly put into words how it feels... excruciating doesn't even begin to cover the feeling. When suicide sounds so relieving to someone who isn't remotely suicidal, you know they are bad. I'm at the tail end of one right now. Of course, the only treatment I have found is Sumatriptan. but now I am in the cycle of Sumatriptan helping and it causing rebound headaches. I am stuck between a rock and a hard place. I am going to try high flow oxygen and hope it makes a difference. .. I don't know how much longer I can do this. Why us? Seeing you suffer in this video made chills run down my spine. I have been there. I've shoved my face in nearly boiling water to stop the pain (which it didn't) I've hit my head on the wall, paced, ripped at my face, screaming and crying.. only to live in fear of the next one coming. My heart goes out to you. I hope and pray that they find a cure for this horrific disease.

CarPhonix CarAudio : Oh my god...... this is hard to watch. You are a true survivor brother. It was incredible meeting you today!

Ian Frizell : Very distressing to watch.

iViPeRQG : I respect you.

Codester : I wouldn't wish this upon my worst enemy. Jesus Christ

activision : my friend who suffers from cluster headaches finds that they occur less if he uses psilocybin mushrooms occasionally

Douglas G : I've broke both my hands ,punching myself in the head, I've head butted steel doors off their frames , I've head butted the back of a van so hard, the passenger window broke , I actually bought a special hammer to knock my self out with.

Son of saints : May the lord bless you forever.

decentradical : This is heartbreaking.

Nerf Moments : Suffered many years myself great post very brave hope it spreads awareness

awe amadeus : please god save him

tombstone909 : I heard Magic mushrooms help

D C : I know this video isn't for pity, but as a grown man, this made me cry. I'm so sorry you have to go through so much pain. Hugs to you, and hope each day will get easier.

Febra May : I thought I was the only 1 that suffered like that, my family thinks I'm crazy

Nick P : Hey I am a fellow sufferer and thanks for posting. Mine began in college in 2010 and now I haven’t suffered from a bad attack in over a year whereas before I would have 2-3 a day, with clusters reoccurring every other month. After trying several pioneering treatments and anything they could throw at me, I just want to say that the one thing that has helped me is learning how to manage them quickly; the most important thing being TAKING 1000mg RAPID RELEASE TYLENOL AT THE VERY FIRST SIGN OF A CLUSTER. A lot of people don’t realize how crucial it is to take their anti inflammatory IMMEDIATELY when you first feel one coming on. You must always treat those first shadows/ signs as an emergency and do whatever is necessary to get Tylenol and some water in you as fast as possible. 5-10 mins after the first itch is too late. I just wanted to say that because it has changed my life. Cold and hot water alternating helps immensely too. Best to you.

Jason Dubai Realtor : So sorry Tom. I'm a fellow sufferer. I take verapamil twice a day and imigran 100 when i feel them coming. Also when im having episodes. No alcohol or smoking.

ReviewCam : so difficult to watch you in agony:(

John : that actually made me cry.....

Sean Weir : Ill never complain about anything again

o no you again : sorry you have to deal with this brother I don't suffer from cluster headaches but I know pain pain that just sucks the life right out of ya I have broken my back 3 times twice L3 L4 and once L4 S1 also have scoliosis degenerative disc fibromyalgia and massive nerve damage in my entire back and left leg it's not easy liveing in pain by no means it's a big thing just for me to sit on my deck for a bbq with my family keep the faith my friend love the vids I'm hurting hurting with you

Jaime Garcia : Respect to those who have to deal with these excruciatingly painful episodes. I've watched several videos of people getting these headaches, which had remained completely in the dark for me. I just learned about their existence and I honestly, from the bottom of my heart, wish that neuroscience keeps moving at lightning speed so that a cure to this horrendous problem can be found.  I can't fathom how an acute episode of cluster headaches must feel, especially after learning that it goes several leaps above giving birth in the scale of pain. Stay strong, and thank you so much for sharing this with the world.

bain5872 : For anyone to think this man is acting which is reasonable to assume, he is not. I can attest first hand, to the pain as being pure torture. It is the worst type of pain I have ever felt. Actually, it goes beyond pain to another level of agony! I pray for you and all us suffers of what doctors call a headache but I call demonic torture form the pits of hell.   

Aaron Marseglia : be strong, god bless you my friend

Faheem Hassan : Im sorry sir! May Allah help u getting rid off this disease! Reached from Scotty kilmer's channal!

AndyV : psilocybin is supposed to help immensely but unfortunately it is illegal and a 4 hour trip is not for everyone. i hope a cure finds you some day

J M : I love you! You are such a hero to us. I'm crying watching this. 😭😭😭😭 This, unfortunately, needs to be shown because so many don't "get it". You are such a courageous man. Please keep fighting and holding on. Don't let go.

Smileysue74 : Sorry for your pain, dude. I think it sucks even more that it's in a place unreachable...and the way it goes on and on sometimes... ya think it's gonna be over but it just keeps on ... until right before you totally lose your mind and go completely insane....

Claire O'Connor : this video needs to go more viral then it has.. people need to get to know about these headaches in order to find a cure. Your an amazing amazing person for putting up with these horrendous episodes and you will be in my prayers

Ted Parish : hi Tom my name is Ted only a person who has experienced cluster headaches knows what you're going through. I really do feel for you And everyone who suffers from it. I've been in the dentist chair having a root canal done and got an attack. Let me tell you that's lots of fun. I've been in the shower getting an attack and banging my head against the tile trying to knock myself out.I have broken both my arms in accidents and have experienced the pain of a broken bone and I much rather have that pain then deal with a cluster headache.best said it's demon torture.

speedknob : I have cluster headaches and trigeminal neuralgia.  I went through a process called 'trudenta', which balanced all of the muscles, bones and nerves from my shoulders up.  It involved grinding some teeth, building up others, cold laser, ultrasound, massage, electric stim and lots of ice.  It was a three month process and i still do daily therapy at home.  I am not pain free, but the pain is less intense and less often, and I went from 6 scripts to 1.  I pray that you all find some relief from the pain as well.  Unless you live through this, you don't understand.

Jimmy Jesus : I know this pain man, i feel for you so much, fortunately i have been 3 years without an attack, before that i had years of it on and off. No one seemed to understand how much pain i was in which made things a lot more frustrating. In my research i have seen a lot of videos of attacks... i shed a tear for every person i see with this horrible pain. I hope you stay strong mate. From Glasgow,Scotland.

Savanah & Mai : I realize this isn't a brand new post. I have been in this place countless times. Up to Twice a year, for a decade. I've been hospitalized, MRI scans, pain injections and was told I'm crazy, I've pulled handfuls of my hair out by day 9 of a cycle because I was afraid to ask for help again. This is the worst pain ever, even over child birth. I'm so sorry for anyone with it. It's a shot it the dark but, please ask to try Prednisone. I'm not going to sugar coat anything, I took 60mg. I was soaked in sweat, wanted to eat everything. But.... it stopped day 3 after taking it. Small brain zaps but, I'm functional and beyond relieved.

Prophet Muhammad : How can life be worth living with that condition?

Augusto Luís : Be strong, my friend!! Best of luck from Brazil!!! To all of you who suffer from this devastating pain!

topcat 1771 : God bless you poor man my heart breaks for you.

Tommy Vercetti : nice try, he should win oscar

An Ugly Tranny : saw your post on reddit, this looks intense. Tried smoking weed?

VSP CUBER : I don't have this but I know what it feels like. My friend father had a serious attack that lasted 3 hours. I remember him screaming his life out

Kevin Wan : Thanks for making this terrible condition known.  If it means anything at all, you have my deepest condolence.  How can I help?

Kimtothekizzo : I have these types of headaches yet nobody in my family understands my reactions to them. I actually have a very high tolerance for pain but these headaches have me literally screaming and writhing in pain. I wouldn't wish these on anybody.

rachel winrow : I know what you are going through I am 18 and been having these headaches since I was 13 but only got diagnosed about 2 years ago because they wouldn't look past migraine when i was in the paediatrics hospital. I have chronic cluster headaches I have no life anymore and I am supposed to be going to university but I am terrified because of this condition. I now have severe depression and anxiety and have tried to commit suicide many timesso much so that I now cant even take my medication to help with the headaches because of anxiety and fear there is just no end!

JetBlack Angel : As a chronic clusterhead (CCH) of 10 years I found this hard to watch because it's what I go through many times a day, every single day. I'm going through a particularly bad bout right now due to the season changing to spring. My family still don't fully understand the condition because I live alone so they have never seen me like this and the word "headache" downplays the condition in most people's minds. I would like to thank you so very much for sharing this with the world. I sent it to my mum along with the "Pain So Severe" document which can be found on https://ouchuk.org/. It gave her a much better understanding of what us clusterheads go through and I think she finally gets it and can now educate my dad. Thank you for bringing about much needed awareness of this very misunderstood condition. I salute you brave Sir! x

2wheelLove : this is awful to watch. I have had some severe migraines to the point of immobility but im sure what ever I have had is no wear near what you guys experience. I hope you find relieve somewhere bud...i really do.

lewis owens : I remember when I had my first attack the doctor said I was relatively calm about it but I tried to remain professional but it hurt insanely. the only way for relive I've found without oxygen is a VERY POWERFUL muscle relaxer and headache medicine that doctors perceived my dad when his brain swells to big for his skull they also prescribed for me

Riyaj Jayaprakash : As one cluster headache survivor to another.. I feel a bond having experienced the worst pain in life.. I don't know who puts in those thoughts of using an electric drill on my head or to jump infront of a moving car when the pain strikes.. I keep telling myself; it will pass, it always does, and I will be perfectly normal like everyone else after that. Be strong, don't do anything stupid, there are people who love and miss u a lot. And no, no one cursed u to go thru this.. U R not terminally ill and u won't die from this headache. This is not a brain aneurysm or a brain tumor.. U saw ur CT SCAN. U will survive!

m stin : I've been having Cluster Headaches for the past 9 years and that's when I realized I lost my life. 9 years ago with that very first attack. I am a Chronic Cluster Headache sufferer. Which means there has not been any remission for my condition since it started. For the past 9 years for just about every day of my life I've had 1 to multiple attacks. There are literally no words to describe the level of pain I experience. I was a person who enjoyed life and loved to laugh. But the Cluster Headaches changed who I was and my outlook on life. I'll put it like this. If it wasn't for my strong belief in God or in what I know would happen to a person's soul if they committed suicide, I would of ended it a very long time ago. More or less If I was an Atheist I would of ended this pain.   Late in the middle of the night while the rest of the world is sleep. I'm having multiple attacks wishing for death to come. I've lost a lot of close friends, I've almost lost my job on a numerous amount of occasions and the money that I put into my treatment with Neurologist is ridiculous. Being a Cluster Headache sufferer is truly like experiencing Hell on Earth. I'm 43 years old now and dread the thought of dealing with this condition in my Golden Years. What I don't understand is why more research isn't done for this condition. If the world could live in the shoes of Cluster Headache sufferer simultaneously just for one bad attack it would then pay more attention to our condition.

emehtete : I'm sorry to watch this video. I feel your pain man. I suffer from what appears to be the same thing. Mine aren't as severe and aa shitty as this may sound, I'm thankful not to have to deal with what you're going through. Stay strong bro. You aren't alone.

Dylan Kisten : I feel your pain 😥 every spring for most of the season 3-10 clusters a day or more..been admitted to hospital twice and even my neurologist was clueless after running all necessary tests, and its spring again now...keep surviving friend :)

Justin Wilson : I wish that I had some kind of help for my cluster attacks ,I'm homeless and don't no what to do . can someone who is reading this comment van help please do ,please!