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I am terrified still. I am in my second cycle of cluster headaches. I have had chronic migraines for 8 years and migraines since I was 14. This last cluster cycle is 3 months and going. I can have a cluster headache on my left side and a migraine on my right side at the same time.

Misdiagnosed for years as having migraine but I knew EXACTLY what I was having was cluster headache and I was so exhausted and felt so defeated 😪 every single morning the beast would jolt me out of bed at 5 am and I would be rocking back and forth with my head tucked between my knees for anywhere between 15 mins to hours and this cycle would repeat several times a day, for weeks to over a month. The crazy part is I noticed retrospectively I was having these cycles approximately 6 months to 8 months after giving birth. Ive had 3 children and like clockwork, these headaches came after in that time frame...those clusters were the worst so I'm thinking there has to be a hormonal component in my case as to what triggers them. I have been in remission for 15 years, since my son was 10 months old. So much more research needs to be done and more awareness needs to be brought to the medical community as I wasnt being heard by every doctor I saw and ultimately treated like a drug seeker. I wanted to blow my brains out. I missed so much work and couldn't care for my children. Im so grateful for this video and the commentary because it was such a lonely and exhausting and frustrating time. Everyone needs to share this video as much as possible to reach others...knowledge is power. Love and blessings to all! ❤❤❤

Big ❤ Thanks to all of you! So many helpful advices😂. I send my best wishes❤ to All of you. Greetings from Vienna.

I have these & had them for the last 5/6 years

Yes , I've used a hammer , and baseball bat on myself... Your explaining exactly what I feel during attacks. No words to describe tactics i have taken... humming a certain ohm has helped... I found if can keep from crying it helps "sometimes"... on other occasions i felt the crying and screaming helped push out the pressure.. I don't know anything physically I haven't tried. If i moved to the desert, I may not get them as they come in fall - winter... I lived in Arizona before, as a young woman and never got one there... but...they never started until I turned 50 years old. I am willing to move or do whatever i have to do to live Cluster free... I'm doing a parasite cleanse next week... Will see if it cures them too... Pin worm can enter the brain and cause mucus and swelling ... so we'll see... Yes, suicide was a thought, A BIG THOUGHT... I was actually afraid i would accidentally kill myself because I banged my head so hard... Luckily i haven't, yet.. Thank you, winter is is almost here... 😢

Yes , I've used a hammer , and baseball bat on myself... Your explaining exactly what I feel during attacks. No words to describe tactics i have taken... humming a certain ohm has helped... I found if can keep from crying it helps "sometimes"... on other occasions i felt the crying and screaming helped push out the pressure.. I don't know anything physically I haven't tried. If i moved to the desert, I may not get them as they come in fall - winter... I lived in Arizona before, as a young woman and never got one there... but...they never started until I turned 50 years old. I am willing to move or do whatever i have to do to live Cluster free... I'm doing a parasite cleanse next week... Will see if it cures them too... Pin worm can enter the brain and cause mucus and swelling ... so we'll see... Yes, suicide was a thought, A BIG THOUGHT... I was actually afraid i would accidentally kill myself because I banged my head so hard... Luckily i haven't, yet.. Thank you, winter is is almost here... 😢

Has any of you done a de-parasite cleanse? I spent some time with friends who use mushrooms for medicine, and i didn't get a cluster the winter i lived with them but didn't put 2 + 2 together. Thank God i found your videos... I've had clusters 10 years, and yes, I contemplated suicide on many occasions. I also thank God they only came in fall thru winter. I know if they were daily, i couldn't do it... Each year, i have dreaded winter ... I also thank God for you all because no one knows how it feels except us. I have had as many as 10 per day thru the night, couldn't hold a regular job. I thank God again i have been self-employed for 35 years. I am an energy healer myself. Massage Therapist. . I would love to come to a conference when I can, asap... Cluster busters link please 🙏 I don't do Facebook or any other platforms except RUclips - I need a link to find you ??? Is it clusterbusters.org ??? Thank you

I’m in the middle of a spell and just received my cluster o2 kit that he uses in the video. I use two tanks both with 25 lpm regulators and a Y fitting to connect them to the mask. It has made a huge difference. Had always used a 15 lpm with an Amazon rebreather mask but this spell it has been taking almost an entire bottle to abort. Most still lasting 45 minutes to an hour. A 40 lpm on Amazon is 138$, 2 25’s and the cluster o2 kit will cost less than 100$. Keep fighting ❤

I don’t have these, I will thank god for that every day. But I cannot imagine what these people have to go through, my heart goes out to them ❤

I suffer from cluster headaches, it's the worst pain I've ever felt sometimes I wish I would die so I wouldn't have to feel the pain anymore!

4years on we have made slight improvements although other members of society gps nurses etc still have zero knowledge on cures causes🇳🇿🕳️🌖♈🫠

I want help. Χρειάζομαι βοήθεια . Αφορά τον σύζυγο μου. Παρακαλώ πολύ 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏 Έχει δοκιμάσει τα πάντα . Σας παρακαλώ πολύ ,φοβάμαι τα χειρότερα .

Cafergot works, or used to. First one in 14 yrs today. I am not as strong as i used to beyou can order from India

I always called it a beast chewing at back if my eye. Survived 20 yrs, changed the course of my life. Then stopped as suddenly as it came, at 42. 14 yrs later the demon just attacked again. Not as strong as i was. Lots more information and help than 37 yrs ago.

I went to an and e the other night and was told by a nurse stop making noise I am making it worse for myself! She had migraines and knew what I went through! Truly unbelievable peoples lack of knowledge and ignorance or this illness Currently they have drugs that work sumitriptin which they won’t give me So a and e every other night

I found a way to make mine stop when i felt them comimg on. I had severe migranes with pain borderline intolerable for years and years, but i don't believe they were as bad as cluster headaches. When i'd have a migrane, i'd vomit to the point of stomach acid, and then gaggig up nothing for up to 3 hours, and i'd have a slow "comedown" until the next day. It would also make me half blind. I knew one was coming on when i would suddenly struggle to read. Black, silver dark splotches woud take up my vision. My vision perception would stop making sense and feel incredibly off, then the pain and vomiting would come about 15 minutes later I think my migranes were the only time i ever cried from pain, i couldn't imagine what these people feel who have it so much worse. At one point, i even carried around a syringe full of ketamine with me all day just in case as a last resort. How i learned to stop them. I remember researching ways in how i can avoid migranes, And nothing ever worked until one day, i found a reddit comment describing how their dad had intolerable migranes for years until he discovered that if he felt one coming, he could avoid the migrane entirely by doing intense exersize right then and there. After i read that, i vowed i'd give it a try the next time i felt one coming. 4 months later i was in target, sure enough, I suddenly couldn't read labels, my vision distorted, and I felt a migrane coming hard. Literally abandoned my cart right then and there, walked out the target, and went into a dead sprint. Barely able to see, I ran to an open field, and just gave it everything i got, i ran until my chest burned, gasping for air, completely winded until i felt i had nothing left, then ran some more. After 20 minutes of this, flopped onto the ground and waited... and waited. Rather than spiraling into agony and suffering, my vision slowly restored and for the first time of my life, nothing else happened, no migrane. Like when a tornado begins forming, but dissipates into the sky before getting a chance to touch the ground. And it wasn't a fluke. Because it worked the next time and next. Over and over, i avoided them. It genuinely felt like a miracle, nearly too good to he true. I haven't had to do this in over 5 years, been a long while since i felt one coming. Anyways, i hope this information can be useful to someone

I didn't know what I have been suffering from for at least 3 to 4 weeks a year Was till yesterday. Amazing feeling that there are other people in the same boat. My doctor has no clue. He always said ,Well it's just a bad migraine. I am going to educate that SOB next visit. Thanks!!!!

Shoutout to the homie in the Carnifex shirt

Suffering now its been a week already. Where can I get this mushroom? I need help too much pain in my left eye, everyday same time😢😢😢

"to" know....

good not know to not being alone :(

Thanks. Big help for me this video!

I'm thankful I was diagnosed immediately. At least now I know I'm not going to die on the spot. For me, Rizatriptan 5mg will significantly shorten an attack. However, if I get a second headache within 24hr, it won't work. Sometimes I take an Oxycodone from an old back injury. It works, but you sleep for 5 hours.

I have cluster headaches all the time. I’ve found that avoiding foods with tyramine has helped. Although I started eating a little bit of dark chocolate everyday night and that has helped tremendously….i suppose from the polyphenol content and maybe it’s true that dark chocolate stimulates stem cells. I also have cut out caffeine, tea, and seasonings. This has helped me break a cycle of cluster headaches that lasted 30 days in a row.

I’m 48 and have had CH since I was 4, I don’t like taking medications but I have to do something, this thing is destroying my life. I need to try something

Suffering right now while watching this video. Knowing im not alone is everything

My wife has just introduced me to this. Been suffering for 12 years now which coincided with a blow to the face during a soccer game. Can relate so much. Referrals to consultants have been unsuccesful. Have been free of Amyltriptelene and Gabapentin for 5 years now and have come to terms with the pain and have accepted it for what it is but am feel condemned that it may be with me till the day I die.

Hi all, glad to find You 🙏🏻❤️i had my 2 episodes last week… last one was just last morning, I end up in hospital , all checking was ok , it was JUST , ONLY cluster 😭now I’m scared again to go to sleep :( what are you doing people with this pain ??? Any suggestions??? Please help 🙏🏻what are you doing during the attack??? I was diagnosed just few months ago , I’m 48 . A lots of love for all of you ❤️

Hi all, glad to find You 🙏🏻❤️i had my 2 episodes last week… last one was just last morning, I end up in hospital , all checking was ok , it was JUST , ONLY cluster 😭now I’m scared again to go to sleep :( what are you doing people with this pain ??? Any suggestions??? Please help 🙏🏻what are you doing during the attack??? I was diagnosed just few months ago , I’m 48 . A lots of love for all of you ❤️

The situation you describe sounds nightmarish. Although not quite as nightmarish as the headaches themselves. I both admire and thank you for your efforts. I wish you all the best, for all our sakes! Some people are heroes on the battlefield, you guys are the heroes in this arena.

Thank you for the information you shared. I am someone who has suffered from Cluster Headaches for 51 years. Clusterbusters has helped me make my life possible! I will always be eternally grateful. I learn still new things that help me from the information you share. ❤

You need an audience checker. Someone who listens and can tell you when your audio is off. I have clusters, and I couldn’t understand what the description of them was. If someone else was trying to understand, they probably didn’t either.

Where an I purchase an oxygen demand valve?

This video genuinely changed my life. Thank you all involved so much.

22:00 In my non-professional opinion, the Circadian & Circannual Rhythms are the main trigger of daily & yearly CH cycles. The amount & intensity of light we absorb depends on many factors such as location, time of year, sleeping conditions, skin tone, etc etc Night work is now considered a carcinogen, so clearly any disruption to the Circadian cycles are harmful to health in general, but more so in the Clusterhead, as you don't want to "wake the beast!"

Ainslie's testimony is so relatable. I've had the same thoughts about being cursed from a past life or something an ancestor did that I'm paying for. We are not crazy having those thoughts, they're completely normal while experiencing that level of pain. Before the internet I had never met anyone who could relate to it. The pain is out of this world and that is difficult to describe without sounding crazy. One big issue is the title having "Headache" in it, that word is misleading.

TY joe and ABC news for this. Its slow going to educate, but necessary. Doctors get 30 MINUTES of training in med school abt headaches. Thats all. Many nany ppl get locked up on psych holds when in excrutiating oain vecayse docs dont know what else to do w them. Now - inagine being in suividal psin and being out in physical restraints in a osych ward due to physical pain - How wld you feel?

❤ i dont use anything illegal. But i have resoect for those engaged in legal trial thru medical avenues. And? These cluster headaches are fairly common. I met a lady in Chappell, Big Springs, Holyoke w them. Mine are almost gone and i hate skeeping days n up all nite? But it helped break my cycle, so i try to not complain (too much;). June is National Headache Month.

Thanks for this. Waiting for insurance, pharmacy and my neurologist to quit their bureaucractics & get me my stuff…

Hot strong coffee and a vary hot shower on the back of your head neck helps mine I get them bad in my sleep ALLWAYS around 3 am or 6 am I ALLWAYS run to shower when I get out ice cold pack on my temple mine normal go away after 15 mins no point of pain meds by the time they kick in headaches are gone but coffee and hot ass shower really work

Life does not come easily with this curse. I get my episodes every season without fail.

Thank you 🙏

Been doing experiment on my body, i started weightlifting for almost 15 months with high animal protein diet and the attack never came up, but recently i took a rest for only two weeks and guess what? The attack comes again. So yeah workout does really help

Brain freeze is the only thing i can think of to explain so people can kinda get the picture. Obviously 1000 times worse.

You need to change the wall art!?

How can I join , I suffer from cluster headaches over 20 years

And thank you all we fight the good fight

Hello it is nice to have even discovered you guys self mutilation and random injuries are one thing nothing could prepare me for this monstrosity ive had ch for about 10 yrs now family keeps me going any ideas besides blocking shadows all day

If you can lie down during an attack without it making it worse, then it's probably not a cluster headache.

I am 46 years old and have been suffering from Clusters for the last 4 years (3 of those years went completely untreated). My primary care physician sent me to a headache clinic where I met my neurologist. I was in the middle of a cluster headache during my appointment, and he diagnosed me in 2 minutes. I was on Verapamil 180 ER, Imitrex, zolmitriptan nasal spray, and high flow oxygen. Unfortunately my insurance ran out, so all I have been able to do is buy my oxygen (when I can afford it) and I have a heating pad that gets extremely hot and I just push the heating pad against my face adding as much pressure with my hands and fingers against the left side of my face. I have just come across this video and I am so thankful I did, as I feel so alone in this, until I watched this video. People don’t understand this, unless they’ve experienced it themselves. Or they think I’m making it up and drs see me as a drug seeker. It’s so frustrating, I wouldn’t wish this on anyone and some people think I’m exaggerating when I try to explain that this is one of the most painful conditions a human being can ever have. I fear sleep when I don’t have a preventative or acute safety net, as mine happen mostly right as I wake up. I feel a little like the people around me are trying to gaslight me about something they know nothing about. I’m grateful to have found you all!