Whoever called this thing some type of headache definitely never had one and because of that people don't understand what we feel. I wish everyone could feel the pain for 5 seconds than they couldn't believe what we endure, I don't need sympathy, just some understanding. I pray for cluster heads.
I say this all the time. I try and explain it to people but it’s impossible. It’s like trying to explain a DMT trip to someone who’s never experienced it. I hope you’ve found some relief.
Just tell someone imagine your eyes burning and all you can do is rock and hold your hands against your eyes but we all know double pitch black darkness is too bright.
@@somethingclever4888 like u have been shot in the head with a shotgun point blank. Like a tanks run over Ur head. Like u just want to jump Infront of a train to end it all because the pain is too much to cope with.. that's just a start..
Its definitely not a migraine or a headache, lets call it what it is, ACUTE FACIAL NERVE ATTACKS. This guy gets it and Im grateful. This past weekend I had 2 incredible attacks that lasted over 4 hours and took me beyond any rational definition of pain. The pulses from beyond. Living nightmare level. If you are suffering from this, I recommend counting, over and over. Dont let the pain hijack your inner voice, just count. Dont do it alone, get sumpatriptan nasal spray, emgality, steroids, oxygen. GET HELP. Yes psychedelics work for many people, but not for everyone. Implanting stuff in your brain is an intense prospect. You will be stronger because of these. Grateful for peace. We are in this together.
"As a sufferer". People with schizophrenia are called schizophrenics, people with ASPD are called autistic. I know this is not what you meant but i find it fitting to call people with cluster headaches "sufferers". I truly hope a cure is found soon.
4 surgeries where any of them successful? I am afraid to have any type of surgery. I'm going to try Botox next, what are the most effective medications you have found? Valproic Acid has stopped working and Topiramate has little imporvement. Sumatriptan is only effective a small percentage of the time.
Whenever I tell people I get cluster headaches they look at me like I'm a wuss and say well take some tylenol. When I say instead get really reeeeeeeallly bad migraines even though it's way worse than that they look at me with atleast some empathy. Not many people know what cluster headaches are at all.
The best description I ever read concerning the pain of a cluster migraine... "The pain is similar to amputation without anesthetic" Suffered with them for years. Had the episodic clusters about 9 times over 25 years. Oxygen never worked for me. What saved my life was Imitrex injections. Would stop my migraine in 5 minutes every time. I wound up taking hundreds over the years. I guarantee I would have committed suicide without it.
When people tell me that I feel like breaking down, yelling, and smashing my head against the wall all at the same time. I haven't been tortured before, thankfully, but I feel like this is what torture would feel like. Then I end up throwing up and they still act as if I'm making this shit up. Doctor diagnosed me recently, though I've had it my entire life. Was always told it was just migraines. Have a neurologist appointment booked and MRI. Hopefully this crap will come to an end.
I've had chronic clusters for around 5-6 years so i understand the desperation people feel. Mine have finally started to ease into a more episodic pattern but they still kick my ass on a semi regular basis. For those suffering, stay strong and remember no matter how bad they are or how often they come, they WILL end and you will be able to rest, appreciate the down time and don't let them beat you.
I wish my Daddy could have gotten some sort of effective treatment before he succumbed to his final "suicide headache." Days before he shot himself, he told me he would rather eat a bullet before having another headache. I never realized how horrible they really were and my Dad was the strongest man I'd ever known. I never believed that something like a headache could beat him. It breaks my heart knowing how badly he suffered. His doctors pretty much labeled him as a "frequent flyer", someone seeking pain meds and told him there wasn't any treatment for his condition. It seems like someone could have been able to help him get some relief so he didn't have to resort to killing himself. My heart goes out to all of you who have to endure that pain. They say the future for cluster headaches is exciting and promising. Hopefully a cure is on the way!
😢 OMG my heart goes our to him, it can seem like a form of madness,I too have walked into a hospital and walked out after an episode has finished and no one knew or understood what I was going through 😢😢😢😢😢❤❤❤❤❤❤
After being misdiagnosed for most of my adult life, I was finally diagnosed last year. Topiramate, Sumatriptan injections and Oxygen have saved my life.
I'm trialling Oxygen now but since i've been chronic CH for over 2 years after a remission, it's not helping much. But I still got a large canister to keep trying.
Same goes for me 12 years of misdiagnosis, I was finally diagnosed last week and preventive medicine is working so far...from getting 2 to 3 headaches everyday to no headache in 4 days
Most of us will have burned ourselves at some time in our lives, and should be able to relate to this. Even if it was only superficial, you will no doubt remember that sudden, sharp stab of pain that follows when part of the body contacts a hot surface, causing the reflexes to jerk the affected area away from the heat source. Now imagine that at the back of one eye, but instead of lasting just a fraction of a second, it carries on relentlessly for anything from fifteen minutes to three hours. This is a pretty good analogue of a typical cluster attack in my experience; not so much of the nature of the pain, but of its intensity. It's an excruciating syndrome that cannot be ignored and during which it is quite impossible to function normally. One of the worst aspects of cluster headache is that sleep is one of its main triggers, and sufferers often go to extreme lengths to avoid dozing off. Ultimately it is futile, of course, and this is one of many reasons why the disease is so disruptive and places such a heavy burden on the patient. Even when the episode comes to an end and remission begins, it can still take several days - even weeks - for the body to fully recover from the severe sleep deprivation. Ironically, despite being one of the most painful conditions known to medicine, the attacks are completely harmless as far as researchers can tell. They cause no permanent damage to the brain or any of the tissues involved. But patients are sometimes so maddened with pain that they inflict significant physical injuries upon themselves, and it should be remembered that the soubriquet 'Suicide Headache' has been earned - not invented. This really is a terrible affliction and it is reassuring to see the medical profession taking it seriously at last.
Great to see hope on the horizon (treatment wise)... I just finished a cycle lasted over 12 months. was an extreme one. i've had clusters for around 15 years now.. Any treatments / preventatives i try either dont work or they lose effectiveness quickly. With triptans, my attacks rebound with fury.. Soon ill be going in for ketamine infusions.. one week in hospital.. "You don't know your own strength untill being strong is your only option" stay strong everyone.
@@justinjones5281 for a lot of people they work really good, your probably ok.. fingers crossed. redbull is my go to.. magical stuff. Many like mushrooms speaking of magical :D .. never give up, join a group.. lots of info out there and lots of options. Lately i heard people say they think using o2 is prolonging their cycles.. i actually think they maybe correct... look into microdosing.. take care
@@thedorske Hey Mick. I'm a long-term sufferer too. Red Bull? Why Red Bull? How fast does it help? Is it the caffeine in it? I've tried so many things, but never Red Bull. Jeff
@@jeffnorman8644 personally I think it's a mix of a sugar rush and taurine. Either way it's amazing how dramaticly lower the pain gets.. over a horrible tasting drink.. please try
I'm having my second episode. First one was a year and a half ago, same season. I didn't know what was happening the first time. I thought I had a tumor or something, it lasted 2 weeks, had 2 moderate attacks during the day and it was worse at night, excruciating. It lasted about 2 weeks. It was unbearable and I've given birth! It was way worse. Having my second episode now, it's been 8 days... 3 a day. 7.5/10 on the pain scale, still awful but not as awful as those night episodes I had. Praying it doesn't get worse. I feel like my ear and eye is going to rupture, but I think it helps knowing that I don't have a brain tumor this time.
I've had cluster headaches for 13 years now I just wish it would go away and never come back I'm a big guy and I can tolerate pain but this put me down
Didn’t realize other prior experienced these other than myself, honestly thought something was wrong with me. I get them here and there, they last around 1 and half to 2 hours. Worse pain I have ever felt being military and law enforcement. I don’t wish it on anyone. I honestly feel for the people that have it everyday. People who have never had one, do not get it and will never get it. Oh just take some Advil or Tylenol. Nah it won’t work much less phase it. It’s definitely a rare disorder. Glad to see I am not alone.
Kenny Mac honestly I never knew exactly what you was going through, now I know. Been going through them for about 2 years now. I really be walking back and forth, screaming at the top of my lungs when I have one.
I'm seeing this in October of 2019. I had cluster headaches for 20 years. These are not to be confused with 'migraine' headaches. I would gladly trade you 20 migraines for one cluster episode. I haven't gotten one since 2015 but I can't tell you how I am even still alive after having them for 20 years. There were very many times I felt like a bullet to my head would be better than going through this shit, again and again. I used to actually bang my head against the edge of stairs to feel less pain. It sounds stupid but, it still felt better than a rail spike in my eye being constantly hammered in. My Dr. Considered me a lab rat to try and help. It's a long story and nobody cares but, the worst of it was..it would sometimes stop after an hour...but then it would come back even worse after it went away. I wouldn't wish this shit on my worst enemy. (Well, maybe I would) Just stop calling it a migraine. A migraine would be a day in the park. I haven't had one for a few years. Even talking about it still scares me. My Dr at the time was incredibly useless. Oxygen was useless. I took many different meds that did nothing. Maybe mushrooms are the answer. I don't know. Couldn't hurt.
Amen Phil. People are like it's like a migraine? Fuck no. I wished I had a migraine. It would be a day in the park. I dont know why they even call it "headache". What a crock of shit. Ought to call it cluster skull an eye buster. Would make more sense.
I have had cluster headaches for 11 years I am a women a mother and wife. They completely bring down bed ridden for weeks and in and out of doctors office and emergency room. I have had doctors refuse to treat they send me away and I have been accused of being a drug addict many times. It is the worst pain ever and not having someone to back me up is very hard
SAME HERE! Being accused of being a drug seeker is a very common complaint I have heard from other sufferers. Totally disgusting! Opiates are totally useless for cluster IME anyway, but when I first was admitted to hospital I was screaming for pain-relief (anything just make it stop!!!) and I guess they assume I am after some form of Narcotic. Luckily I am now taken seriously after being in hospital for a few days. I have found that a nitrous oxide/oxygen mix can kill off 80% of pain within 20mins, even in the worst attacks. They now have notes in my file where I can get Nitrous oxide/oxygen mix in any ER without being admitted. At home I have my own Oxygen tank but the Nitrous mix is incomparably stronger.
Ask for imigran. Or something with sumatriptan. I 1st used it 2 years ago and had no headaches for the 2 yrs until Friday 2 weeks ago. Imigran helps ALOT!! Tastes horrible but bad taste is better than hot poker pains in the eye or head.
I saw a new doctor last month I was so excited to talk to her about my headaches. My excitement turned quickly into disappointment and helplessness. She made a headache plan and she wants me to drink Gatorade and take ibuprofen 😫😫😫😫. It's 2020 I don't think I should have to deal with a doctor that doesn't even understand.
Like w Gatorade? Shes thinking add hydration + some sugar. And ibuprofen? Nsaid for pain n swelling... interesting thought. Ur doc is trying to think it thru... Again? Agree w others- she just doesnt get how bad these can go.
I suffer from cluster headaches and have been for years. In fact, I'm suffering from one right now and I'm searching on RUclips for possible solutions. I can't go to the doctor because by the time I'm able to get in front of one or even be referred to a specialist (which takes about a month), the headache cycle in over and I have nothing to present with. Forget the ER, they'll just turn you away. All I can say is that after watching this video, I'm so thankful I'm only an episodic sufferer and not a chronic one.
I used to be a chronic one and after few years became episodic one. Thank God! But stay as far away from night shifts as possible. It made it worse and now I have more often and longer episodes as a result. Eventhough I do not make night shifts for 3 years anymore.
Still see a doctor and specialist neurologist for this to prepare for the next possible attack. Please! After years I have found that verapamil as a preventative when I feel the first tingle, electric bolt through my head, I take it 3 times a day and this year it prevented them coming on at all. If any do break through I have oxygen. Again took years to fight for this prescription. Worth trying to put things in place now before the nect cycle. Good luck
I finally know what this is now, time to see a doctor. Btw I actually appreciated the glitchy video, as stupid as it sounds it somewhat vindicated the insanity of my headache right now. Anyone else just try to push through? Feels like I'm about to die, but I'm waiting for the codeine to kick in. Good luck to everyone dealing with this, fuck cluster headaches!
You don’t have cluster headaches if using pills works to defeat the pain. We are here because our entire nervous system is jacked up from some unknown reason
@@justinjones5281 Ah, two years ago. I never said it defeated the pain entirely, but you've underestimated my dosage of codeine. You underestimate the effectiveness of opiates in general I reckon, not that I would recommend dependency, but ay, thanks for the reply Dr. Jones! lol jk, hope you're ache free as you read this.
Suffered from these a few years back omg 2 a day for 10 weeks the worst pain I have ever had Tried all medicine no joy by the time I got an appointment for a neurologist the episode’s had passed was given two tanks of oxygen thank god never had to use them but these headaches left me with nerve damage over my eye it just constantly sweats small price to pay but because I had one episode I was told they could come back I could set my watch to these 2.10 am lasting up to an hour and again at 7.10 am lasting the same time The only thing that worked for me was rocking, crying and I bought a nasal spray that helped as my nose felt like it was on fire
I'm a chronic cluster head ache...Migraine..This video explains me every day...Doc was giving me 800 mg Ibruprofen....Witch helped really great.I have these Migranes all the time..I never had these untill my blood presure went crazy..I feel like this trigured the clusters..
30 years for me. Long remission periods fortunately. I don’t think there was a name when I first got this. Just got into a new cycle a few weeks ago and had one of my worst attacks ever last night. I need to try something if I get worse.
Give up anything with gluten and sugar in. Also get physio for neck to reduce pressure on Trigeminal nerve which is activated during CF attack. It affects jaw, eyes and head. I speak from experience. I rarely get CF now following this protocol! Hope this helps someone?
Been having cluster headaches for 15 years, How crazy it sounds , you learn to live with it. Oxygen is for me the most effective . works 7 out of 10 times to abort an attack or make it much less painful.
I’m so tired of having these headaches every day for years now every morning these headaches wake me up every day at the same time I only haven’t blown my brains out because I have my family my baby to live for
Mate I cried reading that. You need to start a micro dose regimen it is like flicking a switch. Literally saved my life I was at the end the same as you the only thing that stopped me swinging from a rope was the kids and misses. Hope you find relief mate all the best.
Don't underestimate migraines, my friend. They can make you as sick as a dog and last for days, which places a huge burden on the patient. I would describe a bad migraine as the hangover from hell, and if I had to put up with them regularly I would lose the will to live. A cluster attack is typically much shorter, but is a continuous, unrelenting torrent of angry, raging, savage pain that is quite unlike a migraine. The two are as different as chalk and cheese, so there is little point in comparing them. But if pushed, I'd say I'd much rather have neither!
@@MSM4U2POM My migraines only last a day or two max. I'll get one or two a month, occasionally sometimes 4 or 5 a month. The pain is brutal. Any sound or light is an absolute torture.
Can we please just talk about how isolating and lonely these are? Like no one in my family or friends circle understand. I always get the snarky " oh amother headache". I feel like I'm missing out on so much and wish i just had someone in my life that cared enough to educate them selves and be there for me I didn't choose this :(
In a cluster right now. Started mine around age 30, only smoked lightly in my early 20’s, but also asthmatic. I take imitrex pills at onset. My cycles usually last 2-3 weeks every other year around spring or fall. Glad to see possible new treatments but this disease SUCKS. It is hard to describe how exhausting it is and how irritable it makes me.
I have them every year at the same time and sometimes during the year for no particular reason - stress or no stress. I believe it can make it worse, so as alcohol, caffeine, nicotine, paracetamol, irregular sleep (I almost passed out from numbing pain during the night shifts), etc. But I really do not believe it is the one reason. I got cluster headache even during my happiest time...sadly.😥
@@Frostified really? I’m going to definitely look into this. Thanks for the info! I just got over mine and they had been going on since August 21st! They suck! I’m glad to hear you got through them.
I get text-book HA like this. I feel 100% sure they started few years after a chemical exposure to Zinc Chromates. A high dose, put me in hospital. First three years after my sinus rain mucus, then HA came then HA/dizzy, then progressed to cluster HA now today. You say normally not from something that happens. Can they say that with confidence? I need to know. I never had HA before the exsposure.
I remember my first attack back in 2016 and it happened while I was sleeping. I didn't have that episode in a long while until 2018 and started to get them every other day in 2019. In 2020, that is when I was even more concerned I was getting cluster headaches sometime in September and now. I do see a neurologist and he currently has me on a H oxygen tank and Verapamil which it kind of helps but I would still get those painful episodes I would even document it in my phone. I am hopeful that there will be a solution a cure.
I had my first attack last night. I’ve suffered from migraines for 3 years already, but they are nothing compared to clusters. I had another one today in the morning and I’m really afraid of going to bed tonight because I might wake up with that extreme pain again. Do you have any tips? I don’t know what to do, my mind can’t keep up with this pain
@@eiree7559 It gave me a sort of PTSD, you're scared to stay awake, and you're scared to fall asleep. People have different methods, but with no medication, placing an ice pack directly behind my ear on me neck where the occipital nerve runs, trust me it'll be the only sore thing back there, and occasionally switching from eye to neck.
I don't have them anymore. I had them every year in the month of March. I went to the methadone clinic to get off pain meds didn't have a headache I had to quit going to the methadone clinic and they started back up. now I been clean for 2 years off all drugs and no headaches. so I think what triggered my headaches were snorting pills
I just started getting mine like last year and they always come around march than go away after a while I think we only have the seasonal kind but im a heavy weed smoker but I think drugs has a big effect on it I'm about to go drug free..
My headaches started about a year after I started using cocaine. My Dr ofcourse recommended staying away Columbian sugar but he didn’t say it was likely connected.
I'm 36 years old been battling these headaches since around 16 or 17.... have gotten them every year since young, and it'll last for about 2 or 3 months... been doing lots of research and came across eating raw ginger on a daily basis.. so far I've been 1 year free from an attack.. for those suffering try some ginger... hope it works for you.
If this can help anyone, then great! I have suffered with "hortons headache syndrome - cluster headaches etc." for 15 years plus...my personal combination for relief (sometimes stopping it completely if you can catch it early enough!) is...open the windows and doors to oxygenate the room and get some airflow going on if possible, place an ice pack to the affected side of the head to constrict the vessels / dull the nerves, take a few blasts on a quality sinus relief up the affected nostril, taken with 2 Sumatriptan 50mg, plus 1 500mg co-codamol...you will still experience "dull" pain, but reduced pain, only provided you catch it early doors. But as said, early enough, and you can stop it fully manifesting - I also turn the lights out...however, I'm not to sure that this accomplishes anything other than calming me down. Everyone is going to describe the pain differently due to repertoire of language / ability to express themselves eloquently and accurately etc. so you cant rely on these forms of description. Simply...if you know the pain, and you legitimately suffer from this, then your number one priority should be helping yourselves and others through experienced, tried and tested methods of relief. It is the worst pain that you could possibly endure (within your head) and without a shadow of doubt, the worst kind of headache to exist...its not called suicide headache for effect. There are other methods out there for sure, do some research, but my personal experience is during seasons of activity - nothing "really" works (I have tried everything - side affects and all)...the above is just my method for "dulling" the pain - but as said, every so often, I'm lucky enough to catch it cold. Good luck!
@@nickl7812 wish you all the best...take heart in the fact that they do 'eventually' pass over. Just do your best to mitigate the episodes while they are active.
@@heroicjourney2508 Thank you. All the best to you as well. Exploring all options at this point and open to new ideas. Reading testimony of individuals living with this is helpful.
Thank you I do something similar with ice and oxygen along with sumatriptan. I use to take extremely hot Chili’s also to numb the pain. Just take care of sumatriptan as it is dangerous, doctor would only give me 6 nasal sprays of sumatriptan a month (black label)
Put your head as close to a gas fire as u can this cuts the pain in half,then c a neurologist who should prescribe u sumitriptan injection pens,they keep them at bay I really would like to hear from u if u try this
The best way to describe the severity of these headaches to my friends and family is by telling them a story I read about a guy who had cluster headaches and killed himself (by accident) by putting a power drill through his skull to relieve the pressure.
I have a cycle now for 12 months. The last month, my doctor put me on lithium and memor. My cluster headaches is gone. I hope the cluster headaches stay away.
I had an incapacitating headache like it pain behind eyeball but it in both. I take topamax. It doesn't happen often unless I drink caffeine which blocks the drug. I was left screaming. Imigran wouldn't work. I'd neuro symtoms I'm just glad the pain has stopped I also had dizziness Jerking and fits so uncertain what I suffered from. I never got it again.
I've been suffering for 15 years undiagnosed and untreated. It's the feeling of death, but you dont die. It's nice to finally know there might be some help. Suicide was starting to seem like the only way for this to stop.
Sufferers of CH are the only folks who know what this is like. I have battled CH for most of my adult life, it has changed me. I can go from happiest person in the world, to Darth Bane in 5 minutes. We are some tough folks, that I know.
My cycles are rather unique, they last for typically about a week but that occurs typically once a month. So in other words my cycles are more often but last not nearly as long.
Had 3 during the night and early morning today...I'm episodic..have 3 months in spring and another 3 months later on the year ..mostly between 3-8 attack or night - morning..I've found that ice cold stuff makes it easier for me to endure..oxygen and my cooling mask on and I'm almost good (can at least bare to exist) It took 19 years be4 I got correct diagnose...those years were horrible
@@CharlotteRothmeier I'm searching about it but not finding, can you send me a link or smth plz It just started at me cluster, about 2 days and I'm dyiiiinngg
I use cooling things I keep in my freezer, I press them into my eyesocket and rub them on my forehead etc...it helps a bit so that i can endure it and my panic dosen't get as bad from the pain when i use them...oxygen and cold stuff are my go to's ...in Denmark we use the term Hortons for clusterheadache
I had chronic clusters for 10 years then they just stopped. Horrendous. 100% oxygen didn’t do a thing for the pain. Only thing that worked for me is the sumatriptan auto jets that you inject into your thigh. Amazing effect within 15-20 minutes. Hard to get from a doctor as they are so expensive. I was in the forces so could get them quite easily. Thank god. My heart goes out to anyone suffering from these terrible headaches. Please try the injections if you can get them. Good luck
My wife been having cluster attacks off and on for 20 years now! Shortest period 3 months... longest 6 months! It goes away about a 1-1/2.. than out of no where she starts getting it back! We've tried everything from pills to shots...to even acupuncture and oxygen treatments!! The pills never worked because she couldn't hold them down...acupuncture was suggested but we tried and threw that option out the window...oxygen helped at 1st but now it just burns her sinuses...Sumatriptan shots is her version of tylenol or ibuprofen which only gives temporary comfort! We've been in the emergency room night after nights sometimes...all that could take away the pain at that point has been morphine! We've recently had a good experience with cupping therapy and I'm not sure if anyone has had any experience with CBD oil? I feel for any and all of you and our prayers go out to you..for myself I can't imagine what you go through physically and for my wife she's trying to find any possible remedies in case our kids or their kids encounter clusters if it is passed down?! Which we pray it won't be! proactive not reactive!
@@99lilyana 😁 it's almost unbelievable hey. I remember the first day of no pain its indescribable. Stay happy Anne and pass on the cure when you see one of us at the end of the rope. Cant stop smiling knowing you won!
I had clusters mulitple times a day for 8 years. Then I was told it was a damaged neck muscle and my physio could induce an attack by pressing on the muscle. He told me my muscle went into spasm and needed oxygen, which is why oxygen helps apparently, although I've never tried it. Then one day I was in a yoga class and had brought a freind for his first class. I felt an attack come on and decided to try to go through it so I didn't leave my freind. We went into headstand and my headache dissapeared. Now I just put a pillow next to my bed and hang off the bed for a few minutes as soon as i feel an attack coming in and I havent had a full on headache since. They dissappear quickly and rarely happen at all. I went on Facebook groups to tell people this but was attacked constantly as a quack so I gave up. I'm not saying this will work for everyone but it works for me and is definitely worth a try. Good luck🤞
Actually kind of makes sense. Ill have to try this. I found a really hot shower putting the affected side under the water takes away 70% of the pain. Can usually feel my veins contracting and expaning in behind my eyeball lol
@Prof Mj it definitely works for me. Tell him as soon as he feels one coming on to put a cushion on the floor next to the bed so he can hang off and support himself with his arms. It takes me less than 10 minutes before I'm totally fine. Here's hoping it works for your son 🙏
Its such an annoying painful moment when it sets up and you just sit there just asking why the fuck you gotta suffer this horrible flaw in the brain. How can something hurt so terribly much without leaving damage!!?
My goodness. So sorry to hear that. Hope I never get it. I’m super stressed out this weekend. It’s led me to learn about and appreciate some of these mental issues.
joe gravel holy shit dude how do you deal with that pain?! Try the gon- infiltration! Its pretty successful for most people. I gonna see to get that treatment asap!
I used to get woken 3 times in an 8 hour sleep cycle & several attacks during the day, for those of u who aren't getting the correct treatment (sumitriptan injection pens) of the doc, my only relieve was to put my eye as close to a gas fire or open oven,even if your hair singes at least it cuts the pain in half to 50%.tx me back,I'll tell u all I know ,
There was a clinical trial carried out a few years ago, that involved LSD. The scientists chemically stripped the hallucinogen from the drug and administered the altered chemical to cluster sufferers'. The trial was very small and if I remember only 6 patients took part. In all but 1 case the cluster headache was totally treated. I don't know if any further testing has taken place but the treatment looked extremely hopeful. There seems to be some link between hallucinogenic drugs and the treatment of cluster headaches. I suffered with them for 14 years from the age of 35, but haven't had an attack for years. These damn things do sometimes just disappear on their own, so never give up hope. All the best and stay strong.
I had two today which is a first. The sumatriptan has worked but when it doesn’t. It’s the worst thing to experience. I don’t wish this pain on anyone.
I've got them bad, they follow no rhythm and I'm lucky to get 3 weeks off before the next bout. I'm In life ending pain so I'm interested in the new treatment but can't lie I'm terrified of the implant. Anyone here had the implant ??
im having it daily since two years ,i tried triptan nasal spray but i did have my migraine since 25years and just 2years ago started to have severe daily one with cranial autonomic symptoms which ruining my life ...is it possible body could build resistance ??nothing helpful for my case more than 4days ?
Hey. Tristan Nasal sucks. It's to slow. Get the self-injection triptan and take a shot of it. It takes away the cluster in 5 minutes or less. I've had these clusters for 30 years now.
Im a woman and get clusters at least once a month to two times a month. Droopy eye, watery eye, always on the left side. A trigger I've got is bright sunlight. NOTHING works and NO ONE understands the level of pain. I feel like scrathing my eye out! It lasts about 2 to 3 days at a time. Missed so many chances with friends and family when a headache starts. Its alk i can think about at that time
a lot of patients understand this pain. mine is on a yearly cycle and last for about 3 months, normally end up in hospital with loads of cortisone for a week and then its back to normal. usually not worth the medication side effects tends to be worse, but at least the pain is gone. trying out new natural injections and neck stretches will see how this goes. living with this for about 15 years now. the other injection you can try but is really expensive is Imogran, this is a self injection or jet it works within 10-15 min, I run through $1000 in a week so please be careful. You also get the Imogran nasal spray. i prefer the injection.
I don’t smoke and am not a man. Mine disappeared for a decade and last for 6 weeks during season change from March to May. Mine came back after 6 months in of Trigeminal Neuralgia and fungus ear infection and ocular rosacea.The cluster headache this time is badly debilitating even though everything else is hellish too. It makes a person wonder what the secret is to complete relief. You can’t concentrate this away unfortunately.
Very informative. I was attacked first in 2009, it affected my eyes where my eyes squinted. I didnt know it was it. It would attack every 3 years. I partially lost my left ear. Then this year 2020 in June is when I discovered it was Cluster headache. A month ago, Nov, It attacked again and I partially lost my sight on one eye. But now am recovering. I wish it ends soon. Its very excruciating. But oxyhen by mask and some steroids helped ease the pain. Is there a LASTING solution?
Try going for BAD tx. Benedryl. Ativan. Dexamethasone. This is theory of histamine and inflamation.... We have mast cells all over our bodies, like a secondary sheild to keep us safe from invading bacteria/viruses, etc.... abdomen, neck, brain..... so low back injuries send pain signals up spine to brain - where mast cells react (to save u... heh. ;) and histamibe is releaaed in brain. Histamibe is corrosive, thus ull see swelling red eye tearing congestion - all the cha sx.
Thus why.. u see so many references in literature abt Baclofen helping cha. Low back ties into cha... U can use *more benedryl than usual dose of 2 pills. And now Benedryl is gel caps which work faster ;) On my list is also: 2. Caffeine pills (use bits). Can cause vomiting n upset electrolytes, so dont use too much. 2. Wild cherry pepsi/dr pepper. 3. Msm & flex free. 4. Betamethasone inhaler. 5. Sukie baxter valgal nerve reset. 6. Rogaine to lower bp. 7. Go to higher altitude. 8. Sit in hot mineral spring when its COLD outside (w snowing is great ;) hot buttt, cold head =good 9. O2 - gold standard. 10. Dexamethasone pills, use sparingly. 11.Tylenol (havent tried excedrin migraine - no aspirin for moi) 12. Chocolate. 13. Spicy food/chilies. 14. Lutein for aura, and to help eyes. 15. KETOGENIC diet, lotta protein. This can kinda sorta be manipulated by eating hi fat, lots high protein, then take lotta benedryl (mimics lo fluid intake of true keto diet) + atavan + dexamethasone ~~ all before bed & to help u sleep. 16. Walk.... it causes for many, running seizures, so... walk because thats healthy anyway. Anti-seizure meds? 17. Get out of ur house. Go to mall, drive n get big coffee.... mall? Mtns? Just - go. 18. Hot shower back of head n hot on low back. Or try freezing cold on head, after u use hot on body. 19. Vit C 20. Calcium if u go "hyper"? Ca slows thyroid down. 21. Meditate regularly. 22. Can do warm arms n super warm hands visualization. 23. E.r. Hospital (always chancey to go to e.r. docs LOVE to throw strange drugs at this... or arrest u.... or lock u up in psych ward....) get written orders from ur specialist, or from ur g.p. that specifically articulates in words *EXACTLY* what to do n says dont experiment w new drugs. But fast flow O2, iv, dexamethasone injection, and toradol for pain - can put a slow steady break action on cha like in day 3... 24. Use, at very begin of cha. 1/4 atavan pill + .25 atavan simultaneously. Repeat as needed - u may end up sleepy? Or u may end up bit hyperthyroid? But can stop dead a cha in its starting track. Cha does tie into thyroid. Thyroid ties into endocrine system. 25. Water. Stay hydrated. U may retain fluid or not, temporarily. Salt if u crave it to keep fluid (salt sucks. Salt causes water to go where salt is). ----Diagnostic is oc behavior pattern. Incessant urge to figure out stuff? And commmunicate it... even tho it sounds crazy coming outta ur mouth (sigh~~). Describing it as monster. Like ur exhusband's friends... Spread sheets of documentation. Ull kno ure better when u skip documenting.. >>>>>>>>> Basically ur endocrine system crashes and u go extreme hypothyroid (cry, anxiety, suicide thots, self harm) And at same time - ur bld sugar levels crash ( eat 5+ giant choc candy bars 1 after another...) And - the pain goes sky high. Opioids for pain is way can go. Or poor head can get beaten to death. . Very dangerous time for suicide then. Thyroid t3 or liotyrinine will stabilize bs levels, and work on whole endocrine system to stabilise it.
I have suffered with cluster headache from the age of 14 and 20 years on still having them they have destroyed my entire life I have never been happy I am always terrified off my nexst attack which comes on full blown within minutes I have 7 attacks a day I would rather die than live with this pain it would be better for me because the attacks feel like death has come to take you but the only dam thing is it dosent but I wish it did because the suffering will end
Get sumatriptan, it helps immensely and immediately. Ask your doc. It's a Nasal spray. Imigran is what I use which contains sumatriptan. Honestly, it's the only thing that helps me
@@farakhan7140 well, the pain is not nice so I know how it feels and the relief this imigran medicine gives me is priceless. If it helps others then I'm happy 😊
@@farakhan7140 I am in the USA. I replied to your post from 3 months ago on January 14, this year. I don't know if you ever saw my reply but I offered you some suggestions back then. I wanted to communicate with you further but never got a reply. I suggested a pill that you dissolve under your tongue which always stopped my attacks within 5 minutes, with NO SIDE EFFECTS. There is also a blood pressure drug that stopped my 16 year long chronic cycle for 9 months after taking it for 3 weeks. ALSO, Something happened to me that completely stopped my Cluster Headaches 2 years ago and I consider myself CURED. Even though I have no proof of what I believe caused my attacks and what cured them, I have been trying to get my "suggestion" out via posts on you tube channels like this one. I sent a test email to "Your Name" @gmail.com hoping that might be your email address but I got no response so I assume it is not your email address. If you would like further information please reply to this post and I will get a notification and will give you my email address so we can communicate further. If you are in the UK your time is around 5 hours ahead of mine. JimDM
i know who with God and a good doctor saved my life.i was in BIG trouble with cluster headace had them for 3 weeks then found this doctor in 3 day had me pain free out cutting my grass happy to a live. yeast can trigger my CH the food you intake need to be look at.
Interesting, I didn’t think cluster headaches had anything to do with food ? How often do you have cluster headaches now and how server are they compared with before?
I found that histamine is the main nuerotransmitter that causes the pain. I use Benadryl, 2 pills, when I can't handle the pain. It knocks it out completely! It's an antihistamine. It takes 10 minutes or less. Also cut out foods like yeast that contain histamine in your diet during a cycle.
Hello cluster headache fellows, I just came to tell u the fastest treatment for this, I'm suffering from this headache for 7 years now, tried everything, all types of meds, all remedies,butox injections, I even electrified my head with dog's electric collar, hot water helps a little, jumping helps a little, sumatriptan works but will take time and leave you like a zombie, oxygen and oxygen and oxygen is the magical treatment for this, within 2 minutes of high flow (around 15 liters) will stop the attack
This just started with me. Had to go to emergence Room .. See my Dc. in a week . I want to go to a Specialist this really put the scare on , never heard of it the med VA gave me has also a lot of questions Sumatriptan the ingredients would bring Frankenstein back from the Dead. So far I`ve learned more on line then any were else , did not know why there called Cluster then I fine out THEY could go over a period of time. like cycles WT? Thank GOD I do have Faith in a Living Christ Jesus . and I will seek Him about it.
As a woman I would rather give birth again without any anesthesia than have another one of these headaches. They are dubbed suicide headaches for. a reason. Absolutely horrible! The most forewarning I have gotten of onset is my nose getting congested. However when you have allergies you do not always know if you are congested because of an irritant or if you rightfully fear the onset of a cluster headache. Anyone here that suffers from these I wish you well. I have never been a smoker, a drinker , or a male yet have these anyway. Best to all!
Me 2 mine started Nov. 19 2017 til this very day. Christmas Day did not go to family today been in bed . Headache all day. Hope you get better I'm 52 never really got headaches til last year torment.
@@kevinjosephobejero3297 Thank you so much and you the same. I do feel better knowing its others like me never heard CH migraine yeah. Wouldn't wish this on my enemy. Happy New Year take care.
all syptoms applied to my case but it switch sides ,have seen neurologists and they not helping in in montreal and they know nothing plsss i need help ?is my diagnosis is cluster if it switch sides ??they are confused im a medical doctor and i know it could switch and still cluster headache ??
Yes - they can switch sides. I'm chronic, and my clusters seem to group on one side for a few then switch to the other side for a few. If I'm really lucky they'll switch sides during the one headache and once even hit me both sides at once (pre diagnosis and meds) 🙁
Whoever called this thing some type of headache definitely never had one and because of that people don't understand what we feel. I wish everyone could feel the pain for 5 seconds than they couldn't believe what we endure, I don't need sympathy, just some understanding. I pray for cluster heads.
Exactly
I say this all the time. I try and explain it to people but it’s impossible. It’s like trying to explain a DMT trip to someone who’s never experienced it. I hope you’ve found some relief.
explaining this to my gf is borderline useless
Just tell someone imagine your eyes burning and all you can do is rock and hold your hands against your eyes but we all know double pitch black darkness is too bright.
@@somethingclever4888 like u have been shot in the head with a shotgun point blank. Like a tanks run over Ur head. Like u just want to jump Infront of a train to end it all because the pain is too much to cope with.. that's just a start..
Its definitely not a migraine or a headache, lets call it what it is, ACUTE FACIAL NERVE ATTACKS. This guy gets it and Im grateful. This past weekend I had 2 incredible attacks that lasted over 4 hours and took me beyond any rational definition of pain. The pulses from beyond. Living nightmare level. If you are suffering from this, I recommend counting, over and over. Dont let the pain hijack your inner voice, just count. Dont do it alone, get sumpatriptan nasal spray, emgality, steroids, oxygen. GET HELP. Yes psychedelics work for many people, but not for everyone. Implanting stuff in your brain is an intense prospect. You will be stronger because of these. Grateful for peace. We are in this together.
Still hanging in there hope you are too❤
As a sufferer, I found this really interesting. These attacks are debilitating, and it’s great to hear there are next gen treatments in the pipeline!!
AMEN Ben
"As a sufferer". People with schizophrenia are called schizophrenics, people with ASPD are called autistic. I know this is not what you meant but i find it fitting to call people with cluster headaches "sufferers". I truly hope a cure is found soon.
bro thia fucking blowssssss god this hurts
I healed my brother of cluster headaches. There are ways using mega doses of targeted amino acids and supplements. ALong with lifestyle change
I just started a cycle. It's torture.
take some Mushrooms. my Cycle started last week and now with microdosis of Mushrroms the torture has an ending.
@@Chris81VB why ???
@@mariabastille1723 why why?google psilocybin and Cluster.
Stay strong. As we all know it will eventually come to an end.
Mine just started 4 days ago
I am a survivor of cluster headaches. I have survived suicide attempt and 4 brain surgeries.
4 surgeries where any of them successful? I am afraid to have any type of surgery. I'm going to try Botox next, what are the most effective medications you have found? Valproic Acid has stopped working and Topiramate has little imporvement. Sumatriptan is only effective a small percentage of the time.
@@hosiecarmona9650 take some Mushrooms. my Cycle started last week an now with microdosis of Mushrroms the torture has an ending.
@@Chris81VB any particular mushroom? do you have the name ?
@@carrilloberno ruclips.net/video/9mQSO4Tzbwk/видео.html
@@carrilloberno ruclips.net/video/HJ0Ai2Oh3hA/видео.html
Whenever I tell people I get cluster headaches they look at me like I'm a wuss and say well take some tylenol. When I say instead get really reeeeeeeallly bad migraines even though it's way worse than that they look at me with atleast some empathy. Not many people know what cluster headaches are at all.
AMEN BROTHER......24 YEARS UNDIAGNOSED.........HAVE YOU TRIED OXYGEN TREATMENT SAVED MY LIFE
The best description I ever read concerning the pain of a cluster migraine... "The pain is similar to amputation without anesthetic" Suffered with them for years. Had the episodic clusters about 9 times over 25 years. Oxygen never worked for me. What saved my life was Imitrex injections. Would stop my migraine in 5 minutes every time. I wound up taking hundreds over the years. I guarantee I would have committed suicide without it.
Exactly.. it sucks that not many understand the amount of pain this is
I do understand, I get cluster headache every day, this worst headache you can get, it’s makes me wanna grab a hammer and hit my head.
When people tell me that I feel like breaking down, yelling, and smashing my head against the wall all at the same time. I haven't been tortured before, thankfully, but I feel like this is what torture would feel like. Then I end up throwing up and they still act as if I'm making this shit up. Doctor diagnosed me recently, though I've had it my entire life. Was always told it was just migraines. Have a neurologist appointment booked and MRI. Hopefully this crap will come to an end.
I've had chronic clusters for around 5-6 years so i understand the desperation people feel. Mine have finally started to ease into a more episodic pattern but they still kick my ass on a semi regular basis.
For those suffering, stay strong and remember no matter how bad they are or how often they come, they WILL end and you will be able to rest, appreciate the down time and don't let them beat you.
Pain free wishes ❤❤❤❤😢😢😢
I wish my Daddy could have gotten some sort of effective treatment before he succumbed to his final "suicide headache." Days before he shot himself, he told me he would rather eat a bullet before having another headache. I never realized how horrible they really were and my Dad was the strongest man I'd ever known. I never believed that something like a headache could beat him. It breaks my heart knowing how badly he suffered. His doctors pretty much labeled him as a "frequent flyer", someone seeking pain meds and told him there wasn't any treatment for his condition. It seems like someone could have been able to help him get some relief so he didn't have to resort to killing himself. My heart goes out to all of you who have to endure that pain. They say the future for cluster headaches is exciting and promising. Hopefully a cure is on the way!
Am sorry
God Bless you and family, heart aches as I am one of the lucky ones..😢😢😢😢
😢 OMG my heart goes our to him, it can seem like a form of madness,I too have walked into a hospital and walked out after an episode has finished and no one knew or understood what I was going through 😢😢😢😢😢❤❤❤❤❤❤
After being misdiagnosed for most of my adult life, I was finally diagnosed last year. Topiramate, Sumatriptan injections and Oxygen have saved my life.
I'm trialling Oxygen now but since i've been chronic CH for over 2 years after a remission, it's not helping much. But I still got a large canister to keep trying.
how so please explain i need help this sucks so bad
My story as well ! i m still to be treated !
Same goes for me 12 years of misdiagnosis, I was finally diagnosed last week and preventive medicine is working so far...from getting 2 to 3 headaches everyday to no headache in 4 days
Topiramate stopped mine don't drink coffee or eat chocolate or the medicine won't work I made that mistake! Ouch
you are anazing doctor i never heard such valuable infos God bless u
Most of us will have burned ourselves at some time in our lives, and should be able to relate to this. Even if it was only superficial, you will no doubt remember that sudden, sharp stab of pain that follows when part of the body contacts a hot surface, causing the reflexes to jerk the affected area away from the heat source. Now imagine that at the back of one eye, but instead of lasting just a fraction of a second, it carries on relentlessly for anything from fifteen minutes to three hours. This is a pretty good analogue of a typical cluster attack in my experience; not so much of the nature of the pain, but of its intensity. It's an excruciating syndrome that cannot be ignored and during which it is quite impossible to function normally.
One of the worst aspects of cluster headache is that sleep is one of its main triggers, and sufferers often go to extreme lengths to avoid dozing off. Ultimately it is futile, of course, and this is one of many reasons why the disease is so disruptive and places such a heavy burden on the patient. Even when the episode comes to an end and remission begins, it can still take several days - even weeks - for the body to fully recover from the severe sleep deprivation.
Ironically, despite being one of the most painful conditions known to medicine, the attacks are completely harmless as far as researchers can tell. They cause no permanent damage to the brain or any of the tissues involved. But patients are sometimes so maddened with pain that they inflict significant physical injuries upon themselves, and it should be remembered that the soubriquet 'Suicide Headache' has been earned - not invented. This really is a terrible affliction and it is reassuring to see the medical profession taking it seriously at last.
Great to see hope on the horizon (treatment wise)...
I just finished a cycle lasted over 12 months. was an extreme one. i've had clusters for around 15 years now.. Any treatments / preventatives i try either dont work or they lose effectiveness quickly. With triptans, my attacks rebound with fury..
Soon ill be going in for ketamine infusions.. one week in hospital..
"You don't know your own strength untill being strong is your only option"
stay strong everyone.
Fuck!!!!!! Thought the triptans where the answer fuck!!!
@@justinjones5281 for a lot of people they work really good, your probably ok.. fingers crossed.
redbull is my go to.. magical stuff.
Many like mushrooms speaking of magical :D .. never give up, join a group..
lots of info out there and lots of options.
Lately i heard people say they think using o2 is prolonging their cycles.. i actually think they maybe correct... look into microdosing.. take care
@@thedorske Hey Mick. I'm a long-term sufferer too. Red Bull? Why Red Bull? How fast does it help? Is it the caffeine in it? I've tried so many things, but never Red Bull.
Jeff
@@jeffnorman8644 personally I think it's a mix of a sugar rush and taurine. Either way it's amazing how dramaticly lower the pain gets.. over a horrible tasting drink.. please try
Doesn't have to be redbull.. try raspberry lemonade v.. tasty and effective
I'm having my second episode. First one was a year and a half ago, same season. I didn't know what was happening the first time. I thought I had a tumor or something, it lasted 2 weeks, had 2 moderate attacks during the day and it was worse at night, excruciating. It lasted about 2 weeks. It was unbearable and I've given birth! It was way worse. Having my second episode now, it's been 8 days... 3 a day. 7.5/10 on the pain scale, still awful but not as awful as those night episodes I had. Praying it doesn't get worse. I feel like my ear and eye is going to rupture, but I think it helps knowing that I don't have a brain tumor this time.
Thanks for giving informative information about Cluster headache.
This gives lots of hope
i had a 2 week cycle of them 2 years ago, absolute terror of them coming back
I've had cluster headaches for 13 years now I just wish it would go away and never come back I'm a big guy and I can tolerate pain but this put me down
Didn’t realize other prior experienced these other than myself, honestly thought something was wrong with me. I get them here and there, they last around 1 and half to 2 hours. Worse pain I have ever felt being military and law enforcement. I don’t wish it on anyone. I honestly feel for the people that have it everyday. People who have never had one, do not get it and will never get it. Oh just take some Advil or Tylenol. Nah it won’t work much less phase it. It’s definitely a rare disorder. Glad to see I am not alone.
dude i get these too going through them now smfh
Kenny Mac honestly I never knew exactly what you was going through, now I know. Been going through them for about 2 years now. I really be walking back and forth, screaming at the top of my lungs when I have one.
@@TACTICOOLJOE94 man ive been doing that same shit bring me to tears crying like a baby sorry you having to go through them prayers brotha
I'm seeing this in October of 2019.
I had cluster headaches for 20 years.
These are not to be confused with 'migraine' headaches.
I would gladly trade you 20 migraines for one cluster episode.
I haven't gotten one since 2015 but I can't tell you how I am even still alive after having them for 20 years.
There were very many times I felt like a bullet to my head would be better than going through this shit, again and again.
I used to actually bang my head against the edge of stairs to feel less pain.
It sounds stupid but, it still felt better than a rail spike in my eye being constantly hammered in.
My Dr. Considered me a lab rat to try and help.
It's a long story and nobody cares but, the worst of it was..it would sometimes stop after an hour...but then it would come back even worse after it went away.
I wouldn't wish this shit on my worst enemy.
(Well, maybe I would)
Just stop calling it a migraine.
A migraine would be a day in the park.
I haven't had one for a few years.
Even talking about it still scares me.
My Dr at the time was incredibly useless.
Oxygen was useless.
I took many different meds that did nothing.
Maybe mushrooms are the answer.
I don't know. Couldn't hurt.
Amen Phil. People are like it's like a migraine? Fuck no. I wished I had a migraine. It would be a day in the park. I dont know why they even call it "headache". What a crock of shit. Ought to call it cluster skull an eye buster. Would make more sense.
Mushrooms work.
Micro dosing of Psilocybin (Mushrooms) or LSD helps with mine
hugely
same here. LEGALIZE PSYCHEDELICS
Good and informative. I look forward to the day my episodic CH cycles can be stopped with more effective medication. For now it's O2 and verapamil
I have had cluster headaches for 11 years I am a women a mother and wife. They completely bring down bed ridden for weeks and in and out of doctors office and emergency room. I have had doctors refuse to treat they send me away and I have been accused of being a drug addict many times. It is the worst pain ever and not having someone to back me up is very hard
SAME HERE! Being accused of being a drug seeker is a very common complaint I have heard from other sufferers. Totally disgusting! Opiates are totally useless for cluster IME anyway, but when I first was admitted to hospital I was screaming for pain-relief (anything just make it stop!!!) and I guess they assume I am after some form of Narcotic.
Luckily I am now taken seriously after being in hospital for a few days. I have found that a nitrous oxide/oxygen mix can kill off 80% of pain within 20mins, even in the worst attacks. They now have notes in my file where I can get Nitrous oxide/oxygen mix in any ER without being admitted. At home I have my own Oxygen tank but the Nitrous mix is incomparably stronger.
Ask for imigran. Or something with sumatriptan. I 1st used it 2 years ago and had no headaches for the 2 yrs until Friday 2 weeks ago. Imigran helps ALOT!! Tastes horrible but bad taste is better than hot poker pains in the eye or head.
I'm so sorry. I get the same treatment. One nurse years ago told me I was crazy and it didn't make sense
OMG!!! I have a 17yr old daughter & this is how I'm feeling. Right now I feel like a helpless mom. I want to take her to ANOTHER E.R. to get MORE help
@@bjac1000 what are u taking, please I'm desperate
I saw a new doctor last month I was so excited to talk to her about my headaches. My excitement turned quickly into disappointment and helplessness. She made a headache plan and she wants me to drink Gatorade and take ibuprofen 😫😫😫😫. It's 2020 I don't think I should have to deal with a doctor that doesn't even understand.
Like w Gatorade? Shes thinking add hydration + some sugar.
And ibuprofen? Nsaid for pain n swelling... interesting thought.
Ur doc is trying to think it thru...
Again? Agree w others- she just doesnt get how bad these can go.
i have the chronic form.. i take some meds that lower blood pressure and the help me a lot!
Just had a cycle that started our with the worst attack I've ever had. Oh buddy.. I'm in for it .
I suffer from cluster headaches and have been for years. In fact, I'm suffering from one right now and I'm searching on RUclips for possible solutions. I can't go to the doctor because by the time I'm able to get in front of one or even be referred to a specialist (which takes about a month), the headache cycle in over and I have nothing to present with. Forget the ER, they'll just turn you away.
All I can say is that after watching this video, I'm so thankful I'm only an episodic sufferer and not a chronic one.
I used to be a chronic one and after few years became episodic one. Thank God! But stay as far away from night shifts as possible. It made it worse and now I have more often and longer episodes as a result. Eventhough I do not make night shifts for 3 years anymore.
Still see a doctor and specialist neurologist for this to prepare for the next possible attack. Please! After years I have found that verapamil as a preventative when I feel the first tingle, electric bolt through my head, I take it 3 times a day and this year it prevented them coming on at all. If any do break through I have oxygen. Again took years to fight for this prescription. Worth trying to put things in place now before the nect cycle. Good luck
My head needs you!! Since you left this area my care has been horrible. Are there any Drs still here you can recommend to me! Please!!
I finally know what this is now, time to see a doctor. Btw I actually appreciated the glitchy video, as stupid as it sounds it somewhat vindicated the insanity of my headache right now. Anyone else just try to push through? Feels like I'm about to die, but I'm waiting for the codeine to kick in. Good luck to everyone dealing with this, fuck cluster headaches!
You don’t have cluster headaches if using pills works to defeat the pain. We are here because our entire nervous system is jacked up from some unknown reason
@@justinjones5281 Ah, two years ago. I never said it defeated the pain entirely, but you've underestimated my dosage of codeine. You underestimate the effectiveness of opiates in general I reckon, not that I would recommend dependency, but ay, thanks for the reply Dr. Jones! lol jk, hope you're ache free as you read this.
Suffered from these a few years back omg 2 a day for 10 weeks the worst pain I have ever had
Tried all medicine no joy by the time I got an appointment for a neurologist the episode’s had passed was given two tanks of oxygen thank god never had to use them but these headaches left me with nerve damage over my eye it just constantly sweats small price to pay but because I had one episode I was told they could come back
I could set my watch to these 2.10 am lasting up to an hour and again at 7.10 am lasting the same time
The only thing that worked for me was rocking, crying and I bought a nasal spray that helped as my nose felt like it was on fire
I went 5 years dormant the boom. Hello I’m back.
I'm a chronic cluster head ache...Migraine..This video explains me every day...Doc was giving me 800 mg Ibruprofen....Witch helped really great.I have these Migranes all the time..I never had these untill my blood presure went crazy..I feel like this trigured the clusters..
30 years for me. Long remission periods fortunately. I don’t think there was a name when I first got this. Just got into a new cycle a few weeks ago and had one of my worst attacks ever last night. I need to try something if I get worse.
Give up anything with gluten and sugar in.
Also get physio for neck to reduce pressure on Trigeminal nerve which is activated during CF attack. It affects jaw, eyes and head.
I speak from experience. I rarely get CF now following this protocol!
Hope this helps someone?
Been having cluster headaches for 15 years, How crazy it sounds , you learn to live with it. Oxygen is for me the most effective . works 7 out of 10 times to abort an attack or make it much less painful.
I’m so tired of having these headaches every day for years now every morning these headaches wake me up every day at the same time I only haven’t blown my brains out because I have my family my baby to live for
Mate I cried reading that.
You need to start a micro dose regimen it is like flicking a switch.
Literally saved my life I was at the end the same as you the only thing that stopped me swinging from a rope was the kids and misses.
Hope you find relief mate all the best.
This is my doctor now. Thank god as hes smart. Im still getting suicidal migraines daily. LP did not help.
Do they offer Nitrous oxide/oxygen mix in your country? Its well worth trying..
I've never heard of it before. Maybe the nitrous takes an edge off the pain, while the oxygen aborts.
NO2.
Nitrogen will tie up oxygen receptors. Thats interesting....
It can also kill u, easily....
Walk careful if u try this.
I always thought I had it bad with migraines.. I couldn't imagine the heroic endeavors cluster guys fight through.
Don't underestimate migraines, my friend. They can make you as sick as a dog and last for days, which places a huge burden on the patient. I would describe a bad migraine as the hangover from hell, and if I had to put up with them regularly I would lose the will to live. A cluster attack is typically much shorter, but is a continuous, unrelenting torrent of angry, raging, savage pain that is quite unlike a migraine. The two are as different as chalk and cheese, so there is little point in comparing them. But if pushed, I'd say I'd much rather have neither!
@@MSM4U2POM My migraines only last a day or two max. I'll get one or two a month, occasionally sometimes 4 or 5 a month. The pain is brutal. Any sound or light is an absolute torture.
@@MSM4U2POM I'd might choose getting waterboarded instead of the migraine.
Can we please just talk about how isolating and lonely these are? Like no one in my family or friends circle understand. I always get the snarky " oh amother headache". I feel like I'm missing out on so much and wish i just had someone in my life that cared enough to educate them selves and be there for me
I didn't choose this :(
In a cluster right now. Started mine around age 30, only smoked lightly in my early 20’s, but also asthmatic. I take imitrex pills at onset. My cycles usually last 2-3 weeks every other year around spring or fall. Glad to see possible new treatments but this disease SUCKS. It is hard to describe how exhausting it is and how irritable it makes me.
those treatments may come rather sooner then later.
Having these headaches feels like the end of the world.
I agree
My doc said CH is definitely related to some kind of stress and i belive that is true
I have them every year at the same time and sometimes during the year for no particular reason - stress or no stress. I believe it can make it worse, so as alcohol, caffeine, nicotine, paracetamol, irregular sleep (I almost passed out from numbing pain during the night shifts), etc. But I really do not believe it is the one reason. I got cluster headache even during my happiest time...sadly.😥
Omg it’s so relieving to find people that can understand what I’m going through. These attacks are awful just awful. It’s ruining my life.
I just got over a 70 day cycle. The DMT vape pen aborted attacks instantly!
@@Frostified really? I’m going to definitely look into this. Thanks for the info! I just got over mine and they had been going on since August 21st! They suck! I’m glad to hear you got through them.
Please join cluster busters. We are doing much better than your average sufferer. I'm xboss on there. Great group of people!@@goingoingone8667
I get text-book HA like this. I feel 100% sure they started few years after a chemical exposure to Zinc Chromates. A high dose, put me in hospital. First three years after my sinus rain mucus, then HA came then HA/dizzy, then progressed to cluster HA now today. You say normally not from something that happens. Can they say that with confidence? I need to know. I never had HA before the exsposure.
I remember my first attack back in 2016 and it happened while I was sleeping. I didn't have that episode in a long while until 2018 and started to get them every other day in 2019. In 2020, that is when I was even more concerned I was getting cluster headaches sometime in September and now. I do see a neurologist and he currently has me on a H oxygen tank and Verapamil which it kind of helps but I would still get those painful episodes I would even document it in my phone. I am hopeful that there will be a solution a cure.
I had my first attack last night. I’ve suffered from migraines for 3 years already, but they are nothing compared to clusters. I had another one today in the morning and I’m really afraid of going to bed tonight because I might wake up with that extreme pain again. Do you have any tips? I don’t know what to do, my mind can’t keep up with this pain
@@eiree7559 It gave me a sort of PTSD, you're scared to stay awake, and you're scared to fall asleep. People have different methods, but with no medication, placing an ice pack directly behind my ear on me neck where the occipital nerve runs, trust me it'll be the only sore thing back there, and occasionally switching from eye to neck.
I am in my first cycle. I have been microdosing CBD (under the tongue) for about two weeks (
I don't have them anymore. I had them every year in the month of March. I went to the methadone clinic to get off pain meds didn't have a headache I had to quit going to the methadone clinic and they started back up. now I been clean for 2 years off all drugs and no headaches. so I think what triggered my headaches were snorting pills
I just started getting mine like last year and they always come around march than go away after a while I think we only have the seasonal kind but im a heavy weed smoker but I think drugs has a big effect on it I'm about to go drug free..
My headaches started about a year after I started using cocaine.
My Dr ofcourse recommended staying away Columbian sugar but he didn’t say it was likely connected.
I'm 36 years old been battling these headaches since around 16 or 17.... have gotten them every year since young, and it'll last for about 2 or 3 months... been doing lots of research and came across eating raw ginger on a daily basis.. so far I've been 1 year free from an attack.. for those suffering try some ginger... hope it works for you.
If this can help anyone, then great!
I have suffered with "hortons headache syndrome - cluster headaches etc." for 15 years plus...my personal combination for relief (sometimes stopping it completely if you can catch it early enough!) is...open the windows and doors to oxygenate the room and get some airflow going on if possible, place an ice pack to the affected side of the head to constrict the vessels / dull the nerves, take a few blasts on a quality sinus relief up the affected nostril, taken with 2 Sumatriptan 50mg, plus 1 500mg co-codamol...you will still experience "dull" pain, but reduced pain, only provided you catch it early doors. But as said, early enough, and you can stop it fully manifesting - I also turn the lights out...however, I'm not to sure that this accomplishes anything other than calming me down.
Everyone is going to describe the pain differently due to repertoire of language / ability to express themselves eloquently and accurately etc. so you cant rely on these forms of description. Simply...if you know the pain, and you legitimately suffer from this, then your number one priority should be helping yourselves and others through experienced, tried and tested methods of relief. It is the worst pain that you could possibly endure (within your head) and without a shadow of doubt, the worst kind of headache to exist...its not called suicide headache for effect. There are other methods out there for sure, do some research, but my personal experience is during seasons of activity - nothing "really" works (I have tried everything - side affects and all)...the above is just my method for "dulling" the pain - but as said, every so often, I'm lucky enough to catch it cold. Good luck!
Good read, much appreciated! 4 weeks into my first episode...
@@nickl7812 wish you all the best...take heart in the fact that they do 'eventually' pass over. Just do your best to mitigate the episodes while they are active.
@@heroicjourney2508 Thank you. All the best to you as well. Exploring all options at this point and open to new ideas. Reading testimony of individuals living with this is helpful.
Thank you I do something similar with ice and oxygen along with sumatriptan. I use to take extremely hot Chili’s also to numb the pain. Just take care of sumatriptan as it is dangerous, doctor would only give me 6 nasal sprays of sumatriptan a month (black label)
Put your head as close to a gas fire as u can this cuts the pain in half,then c a neurologist who should prescribe u sumitriptan injection pens,they keep them at bay I really would like to hear from u if u try this
I m surviving this hell since 2005
I get this every year! Apparently magic mushrooms and lsd can stop these headaches but in a micro dose? I'm going to try when my cycle starts.
I have a cluster headache the pain is unbearable and hits in waves I feel for my fellow cluster heads
I also have cluster headache problem but I get attack with it once in every 3 months and lasts for 3 hours...
Mine were chronic for 22 years. Verapamil 480mg per day stopped them after about 6 weeks. Haven’t had a full blown attack for 25 years.
This man is incredibly knowledgeable in Migraine and Cluster headache.
Search him.
There is a video on new acute treatment as well as preventive!
The best way to describe the severity of these headaches to my friends and family is by telling them a story I read about a guy who had cluster headaches and killed himself (by accident) by putting a power drill through his skull to relieve the pressure.
LoL
Makes sense to me. ;)
Well.....here I am 4 years later. Hopefully soon. God Bless 🙌
I have a cycle now for 12 months. The last month, my doctor put me on lithium and memor. My cluster headaches is gone. I hope the cluster headaches stay away.
I had an incapacitating headache like it pain behind eyeball but it in both. I take topamax. It doesn't happen often unless I drink caffeine which blocks the drug. I was left screaming. Imigran wouldn't work. I'd neuro symtoms I'm just glad the pain has stopped I also had dizziness Jerking and fits so uncertain what I suffered from. I never got it again.
It's 5 years later...has something improved yet in the way of treating CH?
I've been suffering for 15 years undiagnosed and untreated.
It's the feeling of death, but you dont die.
It's nice to finally know there might be some help. Suicide was starting to seem like the only way for this to stop.
Try Emgality. Talk to your doc.
Me too.
More times than you could count
Sufferers of CH are the only folks who know what this is like. I have battled CH for most of my adult life, it has changed me. I can go from happiest person in the world, to Darth Bane in 5 minutes. We are some tough folks, that I know.
My cycles are rather unique, they last for typically about a week but that occurs typically once a month. So in other words my cycles are more often but last not nearly as long.
Im only 21 years old but i expereince this since i was 19 but not oftenly but this year after an often lacko f sleep i sometimes feel this pain
I feel very sorry for those who have chronic cluster headache, I'm very lucky to have episodic cluster headache..
Here we are 5 years later and no advancement on how to treat this hellish pain
Had 3 during the night and early morning today...I'm episodic..have 3 months in spring and another 3 months later on the year ..mostly between 3-8 attack or night - morning..I've found that ice cold stuff makes it easier for me to endure..oxygen and my cooling mask on and I'm almost good (can at least bare to exist)
It took 19 years be4 I got correct diagnose...those years were horrible
Which diagnose u took plz?
@@illyrian3361 hortons - ch
@@CharlotteRothmeier I'm searching about it but not finding, can you send me a link or smth plz
It just started at me cluster, about 2 days and I'm dyiiiinngg
I use cooling things I keep in my freezer, I press them into my eyesocket and rub them on my forehead etc...it helps a bit so that i can endure it and my panic dosen't get as bad from the pain when i use them...oxygen and cold stuff are my go to's ...in Denmark we use the term Hortons for clusterheadache
@@CharlotteRothmeier thanky very much for explaining that,
I'll try now directly 👍
My last 3-5 days!!!
I had chronic clusters for 10 years then they just stopped. Horrendous. 100% oxygen didn’t do a thing for the pain. Only thing that worked for me is the sumatriptan auto jets that you inject into your thigh. Amazing effect within 15-20 minutes. Hard to get from a doctor as they are so expensive. I was in the forces so could get them quite easily. Thank god. My heart goes out to anyone suffering from these terrible headaches. Please try the injections if you can get them. Good luck
My wife been having cluster attacks off and on for 20 years now! Shortest period 3 months... longest 6 months! It goes away about a 1-1/2.. than out of no where she starts getting it back! We've tried everything from pills to shots...to even acupuncture and oxygen treatments!! The pills never worked because she couldn't hold them down...acupuncture was suggested but we tried and threw that option out the window...oxygen helped at 1st but now it just burns her sinuses...Sumatriptan shots is her version of tylenol or ibuprofen which only gives temporary comfort! We've been in the emergency room night after nights sometimes...all that could take away the pain at that point has been morphine! We've recently had a good experience with cupping therapy and I'm not sure if anyone has had any experience with CBD oil? I feel for any and all of you and our prayers go out to you..for myself I can't imagine what you go through physically and for my wife she's trying to find any possible remedies in case our kids or their kids encounter clusters if it is passed down?! Which we pray it won't be! proactive not reactive!
Tell her to go raw vegan, it cures CH.
Psilocybin will set you free.. no attacks for years now i do get the odd shadow but free as a bird otherwise.
they work!
@@99lilyana 😁 it's almost unbelievable hey.
I remember the first day of no pain its indescribable.
Stay happy Anne and pass on the cure when you see one of us at the end of the rope. Cant stop smiling knowing you won!
I had clusters mulitple times a day for 8 years. Then I was told it was a damaged neck muscle and my physio could induce an attack by pressing on the muscle. He told me my muscle went into spasm and needed oxygen, which is why oxygen helps apparently, although I've never tried it. Then one day I was in a yoga class and had brought a freind for his first class. I felt an attack come on and decided to try to go through it so I didn't leave my freind. We went into headstand and my headache dissapeared. Now I just put a pillow next to my bed and hang off the bed for a few minutes as soon as i feel an attack coming in and I havent had a full on headache since. They dissappear quickly and rarely happen at all. I went on Facebook groups to tell people this but was attacked constantly as a quack so I gave up. I'm not saying this will work for everyone but it works for me and is definitely worth a try. Good luck🤞
Actually kind of makes sense. Ill have to try this. I found a really hot shower putting the affected side under the water takes away 70% of the pain. Can usually feel my veins contracting and expaning in behind my eyeball lol
Makes sense my son who has them. He sleeps sideways with his head hanging off the bed
@Prof Mj it definitely works for me. Tell him as soon as he feels one coming on to put a cushion on the floor next to the bed so he can hang off and support himself with his arms. It takes me less than 10 minutes before I'm totally fine. Here's hoping it works for your son 🙏
@@sktizo right eye? Mine was the same, absolutely awful. I hope it works for you 👍
@Simon Hodgkinson Thanks so much for this information!!! Be blessed-sending prayers your way
Its such an annoying painful moment when it sets up and you just sit there just asking why the fuck you gotta suffer this horrible flaw in the brain. How can something hurt so terribly much without leaving damage!!?
My goodness. So sorry to hear that. Hope I never get it. I’m super stressed out this weekend. It’s led me to learn about and appreciate some of these mental issues.
its a physical condition, not a mental one
my attack last any were from 45 min to 6 hours most of the time they last 3 to 4 hours
joe gravel holy shit dude how do you deal with that pain?! Try the gon- infiltration! Its pretty successful for most people. I gonna see to get that treatment asap!
I used to get woken 3 times in an 8 hour sleep cycle & several attacks during the day, for those of u who aren't getting the correct treatment (sumitriptan injection pens) of the doc, my only relieve was to put my eye as close to a gas fire or open oven,even if your hair singes at least it cuts the pain in half to 50%.tx me back,I'll tell u all I know ,
I had the diagnose but cranimun, neck injury. Makes No sense,
take some Mushrooms. my Cycle started last week and now with microdosis of Mushrroms the torture has an ending. unbelievable !!!!!
same, massive help
What sort of dose does it take to keep them at bay? Do you take them daily?
There was a clinical trial carried out a few years ago, that involved LSD. The scientists chemically stripped the hallucinogen from the drug and administered the altered chemical to cluster sufferers'. The trial was very small and if I remember only 6 patients took part. In all but 1 case the cluster headache was totally treated.
I don't know if any further testing has taken place but the treatment looked extremely hopeful.
There seems to be some link between hallucinogenic drugs and the treatment of cluster headaches. I suffered with them for 14 years from the age of 35, but haven't had an attack for years.
These damn things do sometimes just disappear on their own, so never give up hope. All the best and stay strong.
Getting every night after sleep.. please help
I had two today which is a first. The sumatriptan has worked but when it doesn’t. It’s the worst thing to experience. I don’t wish this pain on anyone.
I've got them bad, they follow no rhythm and I'm lucky to get 3 weeks off before the next bout. I'm In life ending pain so I'm interested in the new treatment but can't lie I'm terrified of the implant. Anyone here had the implant ??
im having it daily since two years ,i tried triptan nasal spray but i did have my migraine since 25years and just 2years ago started to have severe daily one with cranial autonomic symptoms which ruining my life ...is it possible body could build resistance ??nothing helpful for my case more than 4days ?
Hey. Tristan Nasal sucks. It's to slow. Get the self-injection triptan and take a shot of it. It takes away the cluster in 5 minutes or less. I've had these clusters for 30 years now.
Im a woman and get clusters at least once a month to two times a month. Droopy eye, watery eye, always on the left side. A trigger I've got is bright sunlight. NOTHING works and NO ONE understands the level of pain. I feel like scrathing my eye out!
It lasts about 2 to 3 days at a time. Missed so many chances with friends and family when a headache starts. Its alk i can think about at that time
a lot of patients understand this pain. mine is on a yearly cycle and last for about 3 months, normally end up in hospital with loads of cortisone for a week and then its back to normal. usually not worth the medication side effects tends to be worse, but at least the pain is gone. trying out new natural injections and neck stretches will see how this goes. living with this for about 15 years now. the other injection you can try but is really expensive is Imogran, this is a self injection or jet it works within 10-15 min, I run through $1000 in a week so please be careful. You also get the Imogran nasal spray. i prefer the injection.
Anyone getting relief from lsd, mushrooms or alternative therapy?
I don’t smoke and am not a man. Mine disappeared for a decade and last for 6 weeks during season change from March to May. Mine came back after 6 months in of Trigeminal Neuralgia and fungus ear infection and ocular rosacea.The cluster headache this time is badly debilitating even though everything else is hellish too. It makes a person wonder what the secret is to complete relief. You can’t concentrate this away unfortunately.
Very informative. I was attacked first in 2009, it affected my eyes where my eyes squinted. I didnt know it was it. It would attack every 3 years. I partially lost my left ear. Then this year 2020 in June is when I discovered it was Cluster headache. A month ago, Nov, It attacked again and I partially lost my sight on one eye. But now am recovering. I wish it ends soon. Its very excruciating. But oxyhen by mask and some steroids helped ease the pain.
Is there a LASTING solution?
Try going for BAD tx.
Benedryl. Ativan. Dexamethasone.
This is theory of histamine and inflamation....
We have mast cells all over our bodies, like a secondary sheild to keep us safe from invading bacteria/viruses, etc.... abdomen, neck, brain..... so low back injuries send pain signals up spine to brain - where mast cells react (to save u... heh. ;) and histamibe is releaaed in brain.
Histamibe is corrosive, thus ull see swelling red eye tearing congestion - all the cha sx.
Thus why.. u see so many references in literature abt Baclofen helping cha. Low back ties into cha...
U can use *more benedryl than usual dose of 2 pills. And now Benedryl is gel caps which work faster ;)
On my list is also:
2. Caffeine pills (use bits). Can cause vomiting n upset electrolytes, so dont use too much.
2. Wild cherry pepsi/dr pepper.
3. Msm & flex free.
4. Betamethasone inhaler.
5. Sukie baxter valgal nerve reset.
6. Rogaine to lower bp.
7. Go to higher altitude.
8. Sit in hot mineral spring when its COLD outside (w snowing is great ;)
hot buttt, cold head =good
9. O2 - gold standard.
10. Dexamethasone pills, use sparingly.
11.Tylenol (havent tried excedrin migraine - no aspirin for moi)
12. Chocolate.
13. Spicy food/chilies.
14. Lutein for aura, and to help eyes.
15. KETOGENIC diet, lotta protein. This can kinda sorta be manipulated by eating hi fat, lots high protein, then take lotta benedryl (mimics lo fluid intake of true keto diet) + atavan + dexamethasone ~~ all before bed & to help u sleep.
16. Walk.... it causes for many, running seizures, so... walk because thats healthy anyway. Anti-seizure meds?
17. Get out of ur house. Go to mall, drive n get big coffee.... mall? Mtns? Just - go.
18. Hot shower back of head n hot on low back. Or try freezing cold on head, after u use hot on body.
19. Vit C
20. Calcium if u go "hyper"? Ca slows thyroid down.
21. Meditate regularly.
22. Can do warm arms n super warm hands visualization.
23. E.r. Hospital (always chancey to go to e.r. docs LOVE to throw strange drugs at this... or arrest u.... or lock u up in psych ward....) get written orders from ur specialist, or from ur g.p. that specifically articulates in words *EXACTLY* what to do n says dont experiment w new drugs.
But fast flow O2, iv, dexamethasone injection, and toradol for pain - can put a slow steady break action on cha like in day 3...
24. Use, at very begin of cha. 1/4 atavan pill + .25 atavan simultaneously. Repeat as needed - u may end up sleepy? Or u may end up bit hyperthyroid? But can stop dead a cha in its starting track.
Cha does tie into thyroid.
Thyroid ties into endocrine system.
25. Water. Stay hydrated. U may retain fluid or not, temporarily. Salt if u crave it to keep fluid (salt sucks. Salt causes water to go where salt is).
----Diagnostic is oc behavior pattern.
Incessant urge to figure out stuff? And commmunicate it... even tho it sounds crazy coming outta ur mouth (sigh~~).
Describing it as monster. Like ur exhusband's friends...
Spread sheets of documentation.
Ull kno ure better when u skip documenting..
>>>>>>>>>
Basically ur endocrine system crashes and u go extreme hypothyroid (cry, anxiety, suicide thots, self harm)
And at same time - ur bld sugar levels crash ( eat 5+ giant choc candy bars 1 after another...)
And - the pain goes sky high.
Opioids for pain is way can go.
Or poor head can get beaten to death.
.
Very dangerous time for suicide then.
Thyroid t3 or liotyrinine will stabilize bs levels, and work on whole endocrine system to stabilise it.
I have suffered with cluster headache from the age of 14 and 20 years on still having them they have destroyed my entire life I have never been happy I am always terrified off my nexst attack which comes on full blown within minutes I have 7 attacks a day I would rather die than live with this pain it would be better for me because the attacks feel like death has come to take you but the only dam thing is it dosent but I wish it did because the suffering will end
😢😢😢😢 I feel you hold on tho keep trying new meds I am. Hope you get better soon dear I suffer with Chronic Cluster too.
Get sumatriptan, it helps immensely and immediately. Ask your doc. It's a Nasal spray. Imigran is what I use which contains sumatriptan. Honestly, it's the only thing that helps me
Thanks for your concern I will try that really appreciate tnks
@@farakhan7140 well, the pain is not nice so I know how it feels and the relief this imigran medicine gives me is priceless. If it helps others then I'm happy 😊
@@farakhan7140 I am in the USA. I replied to your post from 3 months ago on January 14, this year. I don't know if you ever saw my reply but I offered you some suggestions back then. I wanted to communicate with you further but never got a reply. I suggested a pill that you dissolve under your tongue which always stopped my attacks within 5 minutes, with NO SIDE EFFECTS. There is also a blood pressure drug that stopped my 16 year long chronic cycle for 9 months after taking it for 3 weeks. ALSO, Something happened to me that completely stopped my Cluster Headaches 2 years ago and I consider myself CURED. Even though I have no proof of what I believe caused my attacks and what cured them, I have been trying to get my "suggestion" out via posts on you tube channels like this one. I sent a test email to "Your Name" @gmail.com hoping that might be your email address but I got no response so I assume it is not your email address. If you would like further information please reply to this post and I will get a notification and will give you my email address so we can communicate further. If you are in the UK your time is around 5 hours ahead of mine. JimDM
i know who with God and a good doctor saved my life.i was in BIG trouble with cluster headace had them for 3 weeks then found this doctor in 3 day had me pain free out cutting my grass happy to a live. yeast can trigger my CH the food you intake need to be look at.
smalltown 777 did you only cut out yeast from your diet?
no but its take a book to tell what else i did
Interesting, I didn’t think cluster headaches had anything to do with food ? How often do you have cluster headaches now and how server are they compared with before?
I found that histamine is the main nuerotransmitter that causes the pain. I use Benadryl, 2 pills, when I can't handle the pain. It knocks it out completely! It's an antihistamine. It takes 10 minutes or less. Also cut out foods like yeast that contain histamine in your diet during a cycle.
I suffer from them I find that fresh cold air seems to calm the pain but the pain is awful and very very painful
Hello cluster headache fellows, I just came to tell u the fastest treatment for this, I'm suffering from this headache for 7 years now, tried everything, all types of meds, all remedies,butox injections, I even electrified my head with dog's electric collar, hot water helps a little, jumping helps a little, sumatriptan works but will take time and leave you like a zombie, oxygen and oxygen and oxygen is the magical treatment for this, within 2 minutes of high flow (around 15 liters) will stop the attack
I have this and headache doesn’t do justice.
This just started with me. Had to go to emergence Room .. See my Dc. in a week . I want to go to a Specialist this really put the scare on , never heard of it the med VA gave me has also a lot of questions Sumatriptan the ingredients would bring Frankenstein back from the Dead. So far I`ve learned more on line then any were else , did not know why there called Cluster then I fine out THEY could go over a period of time. like cycles WT? Thank GOD I do have Faith in a Living Christ Jesus . and I will seek Him about it.
I just had one I thought I was going blind
As a woman I would rather give birth again without any anesthesia than have another one of these headaches. They are dubbed suicide headaches for. a reason. Absolutely horrible! The most forewarning I have gotten of onset is my nose getting congested. However when you have allergies you do not always know if you are congested because of an irritant or if you rightfully fear the onset of a cluster headache. Anyone here that suffers from these I wish you well. I have never been a smoker, a drinker , or a male yet have these anyway. Best to all!
Bad dream . It's worse headache repeating after years
Im on CH attacks again. Started last nov. 18 up to now dec 23 2018..and counting this is torture
Me 2 mine started Nov. 19 2017 til this very day. Christmas Day did not go to family today been in bed . Headache all day. Hope you get better I'm 52 never really got headaches til last year torment.
@@michellejackson1096 ugh so bad. I cant work coz of this.. Been having CH for 12+ years... Hope youll get no CH this coming new year
@@kevinjosephobejero3297 Thank you so much and you the same. I do feel better knowing its others like me never heard CH migraine yeah. Wouldn't wish this on my enemy. Happy New Year take care.
Do you still have them..?? I know it's not he nicest question to answer
@@thelonelystoner1189 Nope not as the moment. Been free for almost 2 months now. Always afraid when it comes back again. You a ch sufferer also?
YES IT IS THEREnow WHY?????😩😩😩😩😩gimme o2
all syptoms applied to my case but it switch sides ,have seen neurologists and they not helping in in montreal and they know nothing plsss i need help ?is my diagnosis is cluster if it switch sides ??they are confused im a medical doctor and i know it could switch and still cluster headache ??
Yes - they can switch sides. I'm chronic, and my clusters seem to group on one side for a few then switch to the other side for a few. If I'm really lucky they'll switch sides during the one headache and once even hit me both sides at once (pre diagnosis and meds) 🙁
I'm 17 and I have had them for almost 2 years and nothing is working and there so painful
Jess Williams for me oxygen really help.
Mpuia644 well I’m under 18 and I can’t do the oxygen yet so I’m put on medicine for it
I researching & is in desperate need of help for my 17 yr old daughter. What helped you please???
Emgality works for me
Josh Miller
How often do you take it? Do you have any side effects?
Stop watching computer/laptop/smart phones .. go out and enjoy the life with Friends..Kids...Families ..that's help you lot to cure headaches!