Worlds Most Painful Disease trigeminal autonomic cephalalgia aka Suicide Headaches Cluster Headaches

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

Page Samantha : remembering that this is a grown man showing that much pain. Must feel like death in ur head. so sorry..

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.

Mike M : As a cluster survivor I know exactly what your going though!! I don't even know how you had the strength to look in the camera and speak. The worst pain I've ever had! The worst part for me is that in a cycle it's just non stop bombardment every night. Your whole life revolves around the clusters when your in a cycle! They are so physically and emotionally draining. After the headache finally goes away , you just lay there breathing heavily, feeling like you just gave birth. Completely exhausted!! During my cycle, even when I'm not having the actual attack I still have tightness in my neck and (what I call) flashes!! Meaning ill be at work or whenever and ill get a quick flash of the headache in my eye which I equate to the headache letting me know it's still there just waiting till late night to torture me!! I don't wish them on anyone!!

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

Sean Weir : Ill never complain about anything again

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

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.

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.

Ian Frizell : Very distressing to watch.

love conquers : I understand 100% my boyfriend age 25 big muscular guy has had it for years. To add to the pain he had a pos father that would hit him in the head when he was younger. When I met him in 2015 he didn't even know there was a name for it or if there were other survivors for that matter. I did extensive research to find out what he has I didn't need a doctor to tell him. I almost left him the first few times he had them but after trying to understand his pain I stayed (it'll be 4 years in December). He had a really bad one tonight & I'm just here trying to find more answers. I just found your channel I'm glad I did. I just watched your most recent video I'm sorry for what the doctor said but you've got to keep fighting. I try to help my bf by giving him back rubs mainly near his tail bone & spine then his head while playing relaxing music. I even research what foods are triggers which there are a lot. I feel like that's all I can do for him I feel so helpless but I know it's better than not helping at all. I wish I could take all the pain away from everyone suffering.

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.

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

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

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.

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

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 said it's demon torture.

T Missing Link Videos : I hate to see you have to go through that pain

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

Scottyboy Scottyboy : Only if normal people with normal headaches wood understand what we go through my prayers goes out to that man

Son of saints : May the lord bless you forever.

Emerson Wallace : I suffer from Cyclic Vomiting Syndrome which has been compared to cluster headaches except in your abdomen. I will not go so far as to suggest treatment options because I know how annoying it is to receive unsolicited medical advice. I will just say this, please do NOT give up finding relief for yourself. I had given up, was at my lowest when I met a doctor who told me to try what I thought was crackpot garbage (acupressure) and I saw a lot of relief. I was also given certain prescriptions and am now living a half normal life. I'm not back to normal but I am still working with my doc and I'm hopeful that I will be back to 100% one day relatively soon. I hope that you can find a treatment plan that helps you too, and please for your own sake DO NOT discount treatment plans that seem unconventional or odd.

Arenzoj : God bless you man. I have IBS and can't take it. I cant imagine the pain you are going through

Vendetta Vandegrift : My heart goes out to not for pity but respect for being human. Your very brave from what i understand about it.

Brendon Lue : I totally understand what your going through, my 1st attack was at an early age I was 13yrs old, had 2 attacks then again at 22yrs old had a few over about 2month period.  The headaches went away and I thought that was it, then 6yrs ago they started again and they are still here.  Every 3-4 months its in season  lasting for about 3 - 5 weeks each time and most times every night for the period.  The attacks mainly occur at night within 2hrs after falling asleep and last  30mins - 2hrs and then at times right throughout the day.  I get some relief with Ice or cold gel packs,  Sumatriptan  worked for a couple of years, I just hope there is cure and it is found very soon. Stay Positive

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

arron brooks : I'm sorry you have to go through so much pain

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!

John Eliason : take mushrooms or LSD - that's what my friend who suffers from these does and it completely eliminates them - he just takes a threshold dose every few weeks/months

Humble one : And now the trump administration is taking pain medication away from us. I hope someday trump learns about this kind of pain or chronic pancreatitis, it would serve him right for what he's doing to millions of pain patients.These headaches are unimaginable for most to comprehend. Many of us have had teeth extracted ,sinus surgeries and many unnecessary procedures being being diagnosed or Drs that don't believe the amount of pain. Even heavy duty medication doesn't help much.

iViPeRQG : I respect you.

Cannabahashed : 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.

Leov : 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

vengfull zealots corner : God bless your soul man

Cluster Head1111 : 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.

Kevin White : I'm CCH 9 years and feel you 100% sir. Thank you for sharing the more awareness we get the better the chance we get some help. Pain Free Wishes!

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

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.

Cesar Chavez : Lord help us. I suffer from it.I died 7 years ago

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.

tombstone909 : I heard Magic mushrooms help

Muse Russell23 : This is really messed up

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.

Patrick Abogado : Supposedly, magic mushrooms are supposed relieve some of the pain. If you're suffering from cluster headaches, do some research about using psychedelics for pain relief.

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 :)

Lets Go Blues!!! : I'm left side guy myself.  Dude I don't know how you can sit in a chair like that I have to walk back and forth or rock my body really hard I can' sit still its just way to intense way to intense.  Having the word headache involved with these really throws people off there nothing like headaches or migraines.  I haven't found any medication that works for me either I pray everyday they will come out with some miracle drug that cures this condition cause I can't hold a job or commit to anything as I'm constantly worried you know.  Anyway props to you and trying to get the word out.  It's impossible to really get the idea of the pain were feeling even in a video but its a start and your doing a great job.  I hope your doing better or at least out of a cycle right now

manifestgtr : I feel your pain dude...I just started my latest series of these last night at 3am...for the people watching this who aren't sufferers, this is not a dramatization....he isn't playing it up for the camera in any way...imagine the worst pain you've felt in your life, then double it and imagine that going on for an hour or suuuuucks

Martina Silver : This made me cry... I don't cry easy when it comes to video and stuff... I'm SO SORRY for what you all with this going through!!! ❤️🙏🏻

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.

Nick Stecki : I share your pain and I hope you find relief.  I fight the same battle. If only certain things were legal.