In honor of Cluster Headache Awareness Day, AMF Board Member and Co-Anchor of ABC’s ‘Nightline’ Byron Pitts shares his cluster headache journey and what gives him hope. Learn more about this disabling disease here: americanmigrai...
I can tell you they are excruciating and peculiar. They'll occur at the same time of day sometimes for days in a row, maybe longer. They'll come on fast and hit like a freight train, like a hot poker searing the inside of your brain from your eye to about your ear on one side of your head. Your eye may droop and water. Your nose may run. You may begin to rock back and forth and hit your head on something, maybe as a natural reaction to disrupt the feeling if only for a second. You might groan and moan and hit things. Sometimes it's hard to be still; it feels like you have to move and have to rock back and forth. It's very intense and very painful. I've used oxygen for the last couple clusters I've had, and I think it works to get the headache to go away more quickly. Not much else seemed to for me, but I may not have tried as many treatments as others. I get the clusters about once every 2 years, and I just started one last night - had a precursor headache around midnight that woke me up and then another a couple hours later that was more like a normal cluster headache. If you suffer from them, don't give up. I know terrible thoughts may enter your mind when you're having one, but remember, it won't last forever, and yes, you are stronger. Hang in there. Be tough. Love you guys.
@@ProfRogers I think certain things might trigger it, but I can tell you when mine started I was already pretty low-carb and in my 20s. Didn’t seem to have a trigger; they just came at the same time of day almost no matter what. Then after a few weeks they stopped. Since then I’ll have a spell every couple years.
Unfortunately, cluster headaches can have various causes and consequently, what treatment works for one person, may not work for another. My cluster headaches have likely been caused by frequent blunt force trauma to my head when I was a kid. The blood flow in my head, especially around the temples, is restricted. I have many triggers that can cause a cluster headache, from intense physical labour to extreme temperature shifts and several other things, though they can also come out of nowhere. Usually I can feel a cluster headache come up around a minute in advance. At that point the only thing I can do is find a place to sit it out. I had one recently while I was grocery shopping. Now imagine that I'm a massive, burly, bearded guy. I'm the kind of dude who, at 2,05 meters, towers over people. That massive, imposing figure I am, crumples up pretty much out of nowhere. Some people start realizing something is seriously wrong when I'm unresponsive, just slowly rocking back and forth, graspig my head with both hands. I barely even register people grouping up around me, poking me to see if I'm ok. Eventually one of them calls an ambulance on me. About an hour later I'm slowly regaining my composure, I call my sister, who lives in the same city, she picks me up and drives me home. Trust me, it sucks. The pain is so intense, it literally overtakes you. All you feel, know, are at that moment is a screaming, searing pain. I think anyone who suffers from cluster headaches knows full well why so many people with this condition try end it all. I want to say I'm strong. But during one of those moments, I'm nothing but a heap of misery. That pain is so intense that I need a day to recuperate. In a bad phase, I get a cluster headache nearly every day. For me, they last anywhere between an hour to half a day. Painkillers do absolutely nothing.
Cluster headaches were the most brutal experience of my entire life. Absolutely nothing else comes close to the intensity and shearing pain of it and it is impossible to understand unless you’ve dealt with it. Migraines do not come close in my opinion. But the Good News is that a carnivore and ketovore diet seems to be eliminating these debilitating headaches for people. I think the clusters are brought on by inflammation, possibly in the brain. Carnivore is anti inflammatory diet. It is absolutely worth looking into. I can almost guarantee that this is a diet related complication. If you have any metabolic issues like high blood pressure, high blood glucose (diabetes), high levels of visceral fat, etc. then you can almost guarantee that the headaches are related to those things, and there’s only one way to fix it, a human species appropriate diet. Don’t know if it sounds insane or not but I will try anything to never have those things again.
!!!!THIS SHOULD HELP!!!! I started suffering from these when I was about nineteen, I'm turning 40 soon and I have studied these myself since then..I've paid as much attention as possible to my body when I got these attacks..I am no scientist but I pinpointed where the pain is coming from and it's exactly where the pain starts when you get a brain freeze..I stumbled upon this accidentally, noticing the pain drinking a freezy and I thought I was getting a cluster migraine. Now I know this might sound crazy but when you notice the migraine coming on give yourself a brain freeze.. I'm serious, as much as possible.. you will be amazed. It has stopped the pain and the attack.. I tried this because I tried everything possible. Everything we do is basically only on the outside, cold compress, hot compress, it helps but doesn't work because the pain is on the inside ya know?? I've been oxygen yes it "might" help, microdosing with mushrooms did "only subside" my pain, but all that just for a headache can't be good for you if you continuously do it.. the brain freeze stopped it in it's tracks..don't know what it is about it,but I seriously think doctors need to look into this. ✌️🍀 Please let me know if it helped you and tell your doctor if it does. We need a way to stop this pain guys..I know what you're going through🍀✌️
I don't like cold drinks, I think I was trying my kid's slushy and as I was getting a brain freeze I thought I was getting cluster headache attack. I thought to myself oh its just a brain freeze without thinking about what just happened. One day a friend of mine asked me what does a cluster feel like and I instantly told him "it feels like a brain freeze that doesn't go away"...I finally had that eureka moment ⚡, I can finally explain to my loved ones that I was going through.
@@b.berhan9767 It's been extremely hard trying to explain that amount of pain, I'm sure people tend to question us sufferers if maybe we're being a bit dramatic trying to explain what it is that we go through. But yes, the best way I can explain it is having a brain freeze from hell that doesn't go away. I know chances are slim When we have a cluster attack hit us and also have something to purposely give ourselves a brain freeze, but if you ever get an attack try to purposely give yourself a brain freeze.. it should stop the pain. Best of luck 🍀✌️
@@luns486 it really is lol. Honestly, I could be jinxing myself here but it's been over a year since I've had an attack.. last time I was in season for them And I gave myself the worst brain freeze possible after trying it a couple times and it seemed to work, I haven't had any problems since. Best of luck!🍀✌️
Mine started a couple months back Do you mind sharing what you use to treat your headaches when they come? I just take paracetamol and endure my headaches for about 3-4 hours before they disappear
This is so heartbreaking for me I'm 14 years in with this horrible body, mind and soul crushing disease, the signs should be so common with doctors and hospitals but we all have to find out through youtube University like this and ive pulled 2 teeth out in the last year because of miss diagnoses 😢 omfg!
Started my cluster headache journey at about 8. Suffering from cluster headaches at an early age is terrible as you know. I know you're a minor but I can let that go cause I know the pain you're in. Try to obtain some mushroom therapy.
Yes the sumatriptan injections have been a lifesaver for me. I have an oxygen tank at home and that works well but not as fast and not always. Thirdly I’ve had good luck with magic mushrooms knocking me out of a cluster. The first time I tried them I was headache free for 2 years.
@@jeltour Hi. I`m glad to hear that you have found things that work for you. I`m more of a "fortunate" sufferer. You see, I get these headaches with years between them and then only for a few weeks. I have no idea why or what causes them, but I know all too well how horrible they are. At the time I posted my comment I was in the middle of a three week litteral hell and sumatriptan saved me, I felt the need to share my tips with you poor people who suffers with this awful condition. Best of luck to you, I really hope you`ll get better
Hey Byron, there is many treatments for CH. D3 Regimine, Mushrooms, and last Stem Cell. Im the 1st person in the world to have stem cell for clusters and it worked. Im currently 4 years 4 months remission. Seem YT page for actual procedure filmed by my wife.
“The fear I felt, the sadness that overcame me as the pain worsened would often send me into a deep depression.” exactly. the pain itself is excruciating. but add to that the exhaustion after a headache and the fear of the next one, the isolation of having to lock yourself away for weeks or months at a time, and the suffocating misery of doing this over and over again… unfortunately i have yet to find a decent treatment.
In my case it took 4yrs until being diagnosed with Chronic Cluster headache, by a professor of Neurology at Queen Elizabeth Hospital, Birmingham UK. Daily lithium dose helps reduce the cycle frequency, and Sumatriptan injections along with high flow oxygen helps keep the suffering to a more manageable level. More people win the lottery than being diagnosed with this condition. The condition needs to be renamed, as the word “headache”, does not correctly describe what sufferer’s have to entail. It’s important to stray strong, eat well, and exercise when possible! If you’re here because you’ve been diagnosed, then congratulations! With the correct medication It only gets better from now. You will get that life back you fought you had lost. Stay strong everyone!
So sorry you are suffering with this. My wife had her first attack today. Oxygen at A&E took it away and prescription for nasal spray to pick up tomorrow. I just wondered, do you have high flow oxygen system at home?
@@ProfRogers HI. Sorry to hear your wife is suffering from this debilitating condition. Yes I have hi flow oxygen cylinders at home, and use 3 cylinders week on average. Sumatriptan injections are the most effective method of aborting attack, but are highly costly if you don’t qualify for free NHS prescriptions. Good luck with your wife’s condition.
@@DanielHall-j8e Too right. Imagine how many ppl were committed to asylum’s over the centuries with this condition, pulling their hair out saying the devils in their head or something. It doesn’t bare thinking about!
Ive never felt a burning searing stabbing pulsating pain like this before. Every freaking Fall, here we go. It feels like the worst and relentless brain freeze is the only way i can describe. The only thing that helps is prednisone for me. Does anyone else have the headache all day but more of a low pain/migraine pain and then the cluster symptoms spring into action every few hrs and subside again into a low level "headache"? Mine switches sides too. Nose runs, is congested... i dont know. I do know i cant lie still at its worst.
I had them before. I went to a physician and they prescribed me medication. They went away. The headaches was the worst pain I ever felt in my life. I hope you get relief from it.
Huh?? Sure doesn’t sound like a cluster headache. In bed, silence and a slow drum beat of pain behind you eye. That’s not a cluster headache. I have had cluster headaches for 25 years. You can’t lay in bed. Sound doesn’t effect it. And it’s a sharp pain with pressure. Glad you got help. But I believe your diagnosis was a bit off.
Not every one of us get them so severe. This was explained to me by a neurologist. I used to reach level 8 of the Kipp scale when I first got them (pacing the room etc). For the last few years they reach level 6 if untreated. His seem to be be level 3 or 4... (Migraine level?) I'm keeping my attacks subdued now with the vitamin D3 protocol (40.000 now). It helps a lot but I can still feel them. Just started to try psychedelics, very hard to find here and expensive... Waiting for the results.
Cluster wont even allow you to sleep it actually wakes me up in the middle of the night screaming in horrendous pain like a blazing ice pick jamming inside the eye and temple
My experience of Cluster attacks i screamed ran headbutted against a steel door just totally agitated like something was gonna explode out of the eyesocket or like of a blazing ice pick stabs me in the eye and tears its way the nerve of the temple to the ear and neck and nose blockage i repeatedly get it like 8 times a day no sleeping as well
Getting a bit nervous about these episodes I've bee having for the last couple of days. Don't ever think I had a cluster headache before last week. Got really ill with a virus for a few days, suddenly pressure in my ear, cluster headaches frequently, and what feels like stuffed sinuses and lymphs.
I don't think there is one. I've had them 35 yrs. I've seen numerous Nero Drs Nero surgeons. Headache specialist I've tried all the meds. They never worked or were short lived. Oxygen worked then stopped The one Dr I saw in NYC said clusters are very complex because the pain behind your eye is coming from a swollen trigeminal nerve. It then inflames the smaller nerves under that nerve which is why they continue during rem They don't know what causes the swelling I now hold ice on my face till I'm numb then use hot water bottle. It goes away in about 15 min Only issue is so tired go back to bed same over and over till cycle ends Nero said these should not even be in the headache catageory He said they are a nerological disorder All the meds are mainly for migraines where you can sleep. They need a preventive med so we can sleep to. Sleep deprivation is bad. It causes bad things over time such as Alzheimer's.
Susan W. Broner, M.D. in NYC. She was my 3rd Neurologist in a 3rd country, and was able to give me the right diagnosis after 25yrs and medication. She as able to break my cycle with Prednisone and Verapamil. (not just the cycle there is no cure)
I had cluster headaches as well. I laugh at it now because I had no idea what it was, so I thought it was normal. The worst of it, I suspect, was because it was rarely known then that such a thing existed, so it wasn't diagnosed. Much like the journalist, I went along, the headaches beginning in my twenties full-on, as if it were something I would have to manage somehow. Recalling how I casually decided that I would simply shoot myself in the head as a way to escape from the torture of the pain, I recently ran across the name "suicide headache." Which caused me to laugh out loud, thinking, "So that's what that was." It's a good thing that a shot into the brain leaves such a horrible mess. Wouldn't you say? A doctor I recall with an M.D. from Harvard eventually diagnosed the pain one day, which I wasn't expecting, and I cried from the joy of it. That was the best thing, up to this point, that a doctor has ever done for me. Thanks for sharing the story, friend and fellow traveler.
Yea I have a hypothesis that is due to some type of inflammation. Either way the best course of action is diet. I believe a carnivore diet would eliminate the return of clusters, forever
Im in my cluster headache period right now. Ive had 10 in 4 days. Its so unbearable. People dont understand. They think its a migraine when its not. They think your exaggerating, or something else is going on. Nowadays even some ppl think u have covid or something. Smh. I have tried all types of medicine. Quit drinking. Trying to quit smoking. Seems nothing is working rn. It's tiring and depressing. It's preventing me from working and paying my bills.
@@OrangeDiamond33 😢😢😢OMG !!!! TRUST ME I FEEL YOUR PAIN FAM...I BEEN GOING THRU THIS SINCE 2009 .. ALL YEAR AROUND EVERYDAY IN MAJOR PAN 4-8 SOMETIMES DAILY .. Then mite go a way 9 months then BACK IN PAIN IN FEB.... I'M ON OXYGEN 2 TANKS FULL BLAST.... WHEN IT STARTS... AND I TAKE 100mg sumatriptan pill .. Is the only thing helps block it... Till next attack.. GOD HELP US ❤😢.. I 🙏MY PAIN N SUFFERING CAN HELP YOU ❤❤/ANY1
😢😢😢OMG !!!! TRUST ME I FEEL YOUR PAIN FAM...I BEEN GOING THRU THIS SINCE 2009 .. ALL YEAR AROUND EVERYDAY IN MAJOR PAN 4-8 SOMETIMES DAILY .. Then mite go a way 9 months then BACK IN PAIN IN FEB.... I'M ON OXYGEN 2 TANKS FULL BLAST.... WHEN IT STARTS... AND I TAKE 100mg sumatriptan pill .. Is the only thing helps block it... Till next attack.. GOD HELP US ❤😢.. I 🙏MY PAIN N SUFFERING CAN HELP YOU ❤❤/ANY1
I am in it now too. I found zomig (very very expensive but in 15 minutes the pain begin to disappear) and Imigran (it needs 30 minutes to make his effect but is during at least 12 hours. I saw 10 neurologist here in Switzerland and it seems only medication to work. I normally have cluster always in this period, for 1 months every day.
@@tomilia2476 Hi there, I live in Zürich and suffer an attack wave (thankfully) only every 3-4 years. Always in/around May. No idea why. I just ended a 4 week cycle of incredible pain and everything that comes with - unable to sleep due to night attacks etc etc. Zomig nasal spray is the only thing I found so far that helps. That, plus oxygen mask at the hospital once in early May. The pharmacist said requests for Zomig spike noticeably end of spring/early summer. The wave is over now and I feel like I lost a month due to it. I really sympathize with people who suffer more frequently.
im one of the 15% that get them 2-6 times everyday with only 2 days a month relief, the pain of a cluster headache is the most humbling agony ive ever had and i used to be a selfharmer
May god have mercy on your soul… I never respond to these but your comment was truly deep… I’m at 1 every 2 hours for 30-45 minutes and I haven’t went 1 day without one in 20 years… so I feel your pain… much luv and respect my sibling of pain…
