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..

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

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

Still hanging in there hope you are too❤

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 kzfaq.info/get/bejne/b9OBhrJlueDGp58.html

@@carrilloberno kzfaq.info/get/bejne/frBgdMxjtM6XmHU.html

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.

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 😢😢😢😢😢❤❤❤❤❤❤

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

Pain free wishes ❤❤❤❤😢😢😢

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

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

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.

same here. LEGALIZE PSYCHEDELICS

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.

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

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.

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.

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.😥

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

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.

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 agree

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.

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!

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 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.

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

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

Wow that's fantastic! I'm in Australia and pay for all my meds and Oxygen. Verapamil, Topamax, Endep plus Maxalt and the steroids ocassionally. But I'm chronic, so there's no remission for me.

Hey Dave. Did you have any trouble when trying to get oxygen on prescription for Cluster Headaches?

Do you work? I get oxygen for free but any other treatment i pay for my self and I can't afford it. I can't work enough. I'm ready tk give up to he honest. It's jusy torture this life. Other chronic cluster headache patients have asled for euthanasia but they can't get it. No doctor will sign for it in the netherlands or belgium. But you do still have to work and we can't make rent. It's just torture.

@@katherinebuchanan9350 so how do you work and pay for all this?

Denmark here, also free doctors and treatment

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 👍

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.

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 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

LoL Makes sense to me. ;)

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???

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.

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.

Tell her to go raw vegan, it cures CH.

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.

Try Emgality. Talk to your doc.

Me too. More times than you could count

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.

Oh God... Bless your soul

its a physical condition, not a mental one

Try some magic shrooms brother,they cured my headaches You should try some from my dealer instagram.com/p/CEwIoCJhjBe/?igshid=ac289fidb19p