I Suffer With Cluster Headaches

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I want to bring awareness to a condition most people don’t know anything about. There’s no cure and I haven’t found any way to relieve the pain... so please excuse the crying face. Hopefully this can get into the right hands and maybe I can attract the attention of a doctor or clinic who specializes in cluster headaches.

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21 окт 2019

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Комментарии : 887

@sammyk6202 3 года назад

Girl you don't have to explain anything ,, everyone who found this video is suffering and we are all in this together ❣️ we will be fine

@PotatoSnot 3 года назад

I've never had one

@JrellNY 3 года назад

actually she DOES have to explain the whole point is people dont know enough abut clusters not even the medical community knows enough so yes she does have to explain so more people understand what we cluster sufferers are going thru..

@justshingodzillawhohasinte7691 2 года назад

I'm not suffering but I cant sleep my head hearts and I'm now starting to tremble when in typing right tnow

@teachandfunnstuff3127 2 года назад

I've never had one, but it terrifies me

@sammyk6202 2 года назад

@@JrellNY majority of the people here are suffering from the same and we could feel her pain in literal sense so we could even listen unspoken words

@pschuit 4 года назад

I have been having them too.... spring and fall. Hang in there. Nobody knows our pain

@DavidDavid-gy7ps 4 года назад

hey bro I had it also, it really means that there is something with your neck..i mean try to avoid mobile phone or pc or any thing that bend your neck for any reason. when sleeping use a pillow that fit your neck and head in the same line of your vertebra.

@user-jg3qh2cq7e 4 года назад

@@DavidDavid-gy7ps thats called a positional headache and or if stress headache. Cluster has no cause

@DavidDavid-gy7ps 4 года назад

@@user-jg3qh2cq7e its said there is no reason cuz no one know it, otherwise every pain has it's reason. And I am sure that mine was cluster. I am pharmacist and searched tens of hours for finding my problem.. And maybe everyone has it's own cause of cluste,just try to find out yours.

@user-jg3qh2cq7e 4 года назад

@@DavidDavid-gy7ps most logical reason at the moment is an extremely high temperature. This effects the hypothalamus which controls the body temperature and also triggers cluster headaches. I acquired my cluster headaches after sepsis at which I had a 40.5°C fever. There is some causes but not guaranteed. Position has little to no effect on your hypothalamus rather your spine and could cause SSF due to build up of fluid

@BroInJapan 3 года назад

Interesting. I have had them since early twenties. It would always kick off in spring and autumn or the occasional blustery dry wind day after changeable weather. When I moved city, they stopped. More humid climate with less change of temperature/air pressure. Then when I moved to Tokyo, they came back. The seasonal changes are very similar to my home town. Kept diaries for years trying to figure out what was triggering them .

@bobmarlon9143 3 года назад

The worst pain ever. My last for 3 to 4 hours. Nothing take the pain away. I don't want loud noise, light, talking. If feels like my left eye is being pushed out of my head. I wouldn't wish this on my worst enemy, if I had one. I feel your pain young lady.

@charlieshaffer472 3 года назад

I been getting clusters for 22 years. Mine come exactly 90 minutes after I fall asleep at night. I hate going to bed knowing I’m gonna wake up in excruciating pain. My heart goes out to you. I been kinda lucky because so far mine come about every 8 years usually when autumn comes around and last about a month. My heart goes out to anyone who suffers from these terrible headaches it’s definitely a life changer

@JrellNY 3 года назад

happened to me last night. 4 in a row after i initially went 2 sleep even tho i took a ubrelvy pill. i feel like giving up

@CHRISFREE84 2 года назад

@@JrellNY I feel u brother 😥😓😫

@CHRISFREE84 2 года назад

I contemplate suicide when I have now

@Frostified 2 года назад

I'm on year 23. Hope u been doing well!

@lived5770 2 года назад

Hello My Dad Suffers From Cluster Headaches It Causes Alot Of Stress In Our Family And Its Horrible My Dad Is Constantly In Pain And Is Speaking To A Neuroligist And He Cant Get The Gamma Core Operation Done Because Of The Pandemic He Has Suffered From Cluster Headaches For About 40 Years Now Since He Was 15 And The Worst Thing Is Me And My Mum Cant Do Anything To Help He Just Has To Go Through The Pain

@maddryan1 Год назад

You are so brave. Thank you. I am in a cycle right now. I don’t feel alone because of your video and the comments. Bless your heart

@FosteringW_love 4 года назад

I’m in a season of cluster headaches as well, at least 2-3 times a day! My heart goes out you my dear, praying for you....hugs

@abigfingahakabigboboman4908 4 года назад

How do you stop them when they start

@pobrez7649 3 года назад

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-9mQSO4Tzbwk.html

@knife_gun_axe9022 3 года назад

Give up alcohol and caffeine and your cured

@aking8477 3 года назад

@@knife_gun_axe9022 I wish it was that easy. I dont drink either

@aking8477 3 года назад

@@pobrez7649 I'm a 35 year old single parent. My party days are behind me. Out of desperation, I'm trying the mushrooms. I'm on schedule to have one tonight, so I'll see if it helps. Fingers crossed.

@desegenperumalkistasamy4790 3 месяца назад

I'm in this with you guys. Been suffering for more than 30 years. No one understands your pain. Try making plans to go out and 10 minutes before you ready to leave the headache starts, try explaining that to people. It sucks. I'm taking topomax and trepelin and it really helps. Thank god.

@Naized 4 года назад

Cluster headaches are honestly one of my biggest fears 🥺👊🏻

@vangoghsseveredear 4 года назад

I get them. They're mine too. They completely run your life. Im terrified of getting them. Im scared of being at work and getting them, because Im in the trades and work away from home. People don't understand. Once they come on all you can think about is how badly you want them to end. Its crazy man.

@Naized 4 года назад

Van Goghs Severed Ear god bless you

@pobrez7649 3 года назад

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-9mQSO4Tzbwk.html

@Isinforblood 3 года назад

Facts 🙄🙄

@Bernardlaurent 3 года назад

I literally told somebody this today and felt unheard ... mines come in 3s... 3 months of morning, noon and night pain ... I remember them like it was yesterday ... meditation early morning facing the rising sun, than at noon when the sun is at his peack and at night was very helpful ... I was prescribed muscle relaxers and sumatriptin nasle spray that helped I think, didn't want to risk not taking them. My uncle suffered from them as well so he recommended the meditation routine very helpful... we both workout alot not sure if that is related.

@kristalt6611 3 года назад

Watching this brings me to tears. I’m a woman in my early 30’s and I’ve been dealing with this since I was 17-18. Being afraid to go to sleep because you have to deal with this all over again the next day... I am 100% with you... it’s been waking me up like clock work and reaches its peak almost immediately. Prescription medication (imatrex/sumatriptan and indomethacin) doesn’t really help (even when it’s taken before an attack starts), let alone over the counter relief. I’m still going through my “migraine” episodes that started about 2-3 weeks ago, and it’s affecting my daily activities including my full time job. The pain is unbearable and feels like the left hemisphere of my brain/left eye is on fire while being stabbed with a hot knife. I do wish that this DISABILITY was classified under a different name because calling this a “headache” is an insult. If there’s anyone out there that has any other suggestions for relief, please let me know

@rubentrteixeira 3 года назад

The shock of ice cubes near the eye sometimes helps.. sometimes hot water. It just takes a little bit off the edge.

@mabrouk5058 3 года назад

Please try psylocybins.

@kristalt6611 3 года назад

@@rubentrteixeira For the most part, anything hot helps soothe the pain. I just wish that there was something out there to stop the pain all together

@kristalt6611 3 года назад

@@mabrouk5058 That has never crossed my mind but I will look more into psylocybins. Thank you!

@sidmcgee6166 2 года назад

Mine started around 22, i think? You lose track of time.... Life everthing. Oxygen, get medical oxygen. Mine stopped at 42, just went away. Like the demon moved on to torment someone else. Wish I could say I wanted it to stay so someone else did not have to endure it. But I don't. Iam glad it's gone. Maybe I killed it after 20 yrs of battling it every spring and every fall for I don't know how long????? I hope it died in all the pain it cause me at once. I still do not really fit in everybody elses world. It haunts me even though it is gone.....for now....forever I pray. My biggest fear is my son may get them. Dr Randy Snider in Denver Co, an accupuncture doc was my only "medical" help. I still won't go to a western medicine doctor unless i positively have no other option. That system is a lie. I would live in a cabin in mountains, or hide wherever i could for fear someone would see me like that. I feel bad for the women that were in my life, they had to watch me in cluster and could do nothing. None could take it. I pray that the demon leaves you soon. It does leave....for whatever reason. In presence, not in the back of my mind. We are never really free from it, from fear it will come back, or maybe attack someone we love.

@heathersmith3290 3 года назад

I'm crying with you. It's so sad that no one understands and it's great to hear your story is exactly like mine.

@PeacAndLove 3 года назад

CH warrior here. Since 2006...keep Fighting.

@FosteringW_love 4 года назад

Bless your heart for making this video,,,you’re awfully brave

@youngbradley26 3 года назад

This has been my whole life. Painfree wishes to you.

@kimberlybranch7551 3 года назад

This. This has been my life since I was 13 and I'm 40 now. I literally feel your pain. 💔

@enockndanyi5685 4 года назад

I suffer from this as well, it's been 5 years now. Same experience as you. The pain is immense there is no better way to put it. Thanks for sharing, you're not alone

@jonathandelima9661 3 года назад

Don't know if anybody told you today but you are astoundingly brave. Stay strong girl!

@avaahblackwell444 4 года назад

You are really brave for sharing this. It helped me understand so much what a friend is going through. Thank you!

@Groovygal2026 4 года назад

As someone with cluster as well for 5 years, I’m sending all the good vibes I can to you because I completely understand and you can’t forget about your life when the pain isn’t there no matter how little that time is. I also wanna warn you about corona bc for people with cluster or migraine conditions it makes the pain come and it doesn’t leave till your not sick anymore like at all. So be careful! I wish u the best!

@Hobart1872 3 года назад

You nailed it. I’ve never heard it described like you put it. I will forever describe the pain this way. Hope you’re doing well!

@lisacuculic3578 3 года назад

Thank you Jackie for posting this. I suffered the same thing and I'm going through episodes now. I am at my wit's end. Everything you described is exactly what I go through also. Everytime I go to sleep I wake up with this ice pick excruciating cluster headache. I feel for you because I'm one who gets them when I sleep and it wakes me up. Hang in there and seeing your video has helped me because I felt so all alone.💓💞💓💖🤯🤯💓💓💓

@avaahblackwell444 4 года назад

I’m so sorry to hear you have to deal with this pain 💕💗💕 silver lining I suppose is that you sharing has allowed me an others to have more empathy and understanding for people we know dealing with this.

@BigJay039 3 года назад

Same here.

@namoh911 4 года назад

Jackie, kudos to you to post this. I have been struggling with these since 20 years and they come back sometimes every years or every 2 or 3 years. Im in the middle of a cycle right now and it is insane. Completely debilitating. One treatment may work is a strong Predniso cure. It has helped me shorten the cycle before but this time I stopped after a week because Prednisone has all kinds of other side effects, major anxiety is one which we already suffer from, just worse. I'm taking Sumatriptan injections 6mg and they shorten the duration of the attack but still leave you with the blurred vision and exhausted feeling. also, FDA approves maximum 12 injections/23 days which is not enough, i get at least 2 attacks/day. Insurance rape us, as always, even with insurance you are on the hook for about $75/injection or about $600 each with no insurance. Zomig gives me too much anxiety and so does Caffergot but worth a try, just make sure sure to not mix triptans and caffergot because that can cause serotonin syndrome and can be deadly! Tried Lithium, also too many bad side effects. It is estimated there are only 1million cluster sufferers which is not enough for our money driven Pharmaceutical companies to come up with a viable treatment. Let's make Monday Jan 13 national Cluster headaches day! Anybody please to promote awareness?!

@michaelasykorova1171 4 года назад

Waiting for the pain. That’s really scary. You are so brave. I hope they will find a cure. This is just hell on Earth. 😥

@teachandfunnstuff3127 2 года назад

I never had one but the pain rank everyone is saying is edging me out.

@margariettabenton8862 3 года назад

I suffer from cluster headache as well. I felt every word you said. Omg I can’t even tell you that I’m so glad I can across your video. Thank you for being so brave to share your experience.

@browneyez5150 4 года назад

Im so sorry Jackie. Sending positive healing vibes, hoping for a permanent solution 💙🖤💙🖤

@JackieHollywood 4 года назад

thank you!

@JamesThompson-mo8ve 3 года назад

You are a amazing woman to go through this torture. I can’t imagine the pain you go through. And you should be extremely proud of yourself . You could easily end it all but you don’t , you keep going and fighting through it . It’s people like you I admire. Keep going .

@HamadaDaw1 3 года назад

Many people recommended the magical mushroom stopping cluster headache . Also i watched a video about using thermal radio frequency to stop the pain of cluster headache by treatment the nerve which cause this pain

@kanegodchild9700 4 года назад

Thank you so much for sharing this. I been suffering from this for about 20 years. No one understands

@vipulnair5217 3 года назад

I cried with you watching the video. Just got over my 3rd attack of the day. I rarely get 1-2 months off between my cycles now and it seems to be getting worse. Tried MM in between a cycle and it gave me the worst attacks I have ever had. Lots of love and pain free wishes to you.

@angelbojorquez1637 2 года назад

You are such a beautiful soul. I don’t relate to this condition, but you’re a strong person for sharing your experience. Stay strong ❤

@215rhino 4 года назад

You absolutely nailed this topic! Everyone tells you to do this and that but they have no clue this is no normal headache !! Only US knows whats best! stay strong! your not alone!!!

@marzone2174 2 года назад

Be strong 💪🏽. We’re all with you. This pain sucks so much. No one knows how we feel. It’s been over 20 years for me. Hugs 😘

@genierpenagos5079 2 года назад

I completely understand your pain. Im 25 years old and suffer cluster since I was 21.. Right know Im in a season of cluster. 1 time a year I get these pains just behind my right eye. Always in winter. I spend 2 to 3 months presenting these pains in the morning hours. I never knew what they were, until 2 weeks ago when I had them again and decided to investigate more. My heart goes out to you, no one can understand the kind of pain this generates. I consider myself to be a very pain tolerant person, and yet it is disabling and desperate. Everyone who found this video is suffering and we are all in this together.

@wildestprince 3 года назад

Hi, I totally get you, I’m in the process of being referred to a specialist. You’ve got the pain description down perfectly. I’m with you, I feel your pain along with everyone else that’s commented on your video, it’s very hard to deal with this every day I know 😢 I’m 11 years in Respect to you for doing this video.

@jamesmilby1775 4 года назад

Thankyou for sharing your experience. I do find it sad that people have to experience this pain. You are not alone. After 20 years of cluster headaches my first ever oxygen arrives tomorrow. I worry every day in case it returns. Yours and others shared experiences help. Thankyou. Jamie in Scotland.

@getbusydrizzy5296 3 года назад

Thank you for this video. My wife sent it to me to understand what she is going through. PLEASE CONTINUE the Videos. I need them for Understanding and Inspiration. Thank you

@jimmy2k4o 2 года назад

Take comfort in your strength. You take the most unbearable pain and you’re strong enough to live with it. Not only that but you’re taking your pain and sharing it with us. Letting us know we’re not alone. I know exactly how you feel, I was finishing your sentences while watching the video.

@adigitalmindonlinedesign 2 года назад

Your a brave woman. I too suffer from CH. 22 years now. I've often thought about doing a video like this, but feel ashamed for some reason. Thank you for sharing. Means a lot to me. Im sure you have support but if you ever want to talk to someone who knows your pain. Please message me. Stay strong.

@EricKingFrey 3 года назад

Thanks for posting this. I have them too. Started in 2019. This will be year 3 and I fear they’ll be back soon. Worst pain ever...I totally understand how we need to look for better methods to treat and manage (or even prevent!) them. I’m looking myself and nature does seem to provide the only things. Doctors have been helpless. I’m grateful for everyday with out this uncomprehendingly painful and debilitating condition. Stay strong!

@gustavburger549 3 года назад

I am struggling as well. Thank u for the video. Never knew so many people suffer from this. Im busy with a cluster head ache right now and decided to Google solutions. Came across this video!!

@kristinal826 4 года назад

Ugh you're so brave Jackie. Its hard living with medical conditions that have no cures. I feel for you. Sending you my constant support💕💕

@JackieHollywood 4 года назад

thank you so much

@pieterdebeer6892 3 года назад

Sheesh girl! We are in this together. I hope you find a way!!! I'm in my cycle now and just got off my attack a minute ago. You are so brave to record this! Good on you and the best of luck!

@blownaparte810 8 месяцев назад

Thank you so much for having the courage to post this. I recorded similar videos during my episode this year to try and cope, but I did them mid attack and it's just way too much to feel ok putting it out there. But it's so validating to hear your experience matching mine so closely. I tried mushrooms for the first time this year mid cycle (about 2 weeks in) and did not get relief. I kept trying every few days, but the cycle just kept going. The fear that comes on when I felt like the only saving grace I had left wasn't going to work... it's just so crushing. It made me cry to hear you describe it so well. I've heard through clusterheads that it can be more effective as a preventative instead of an abortive, so I'm just hoping if I try it next year ahead of the cycle instead of during it will have a better chance of getting of making it help. At this point only oxygen somewhat reliably aborts the attacks, but like you said it feels like no solution, it feels like the bare minimum. I still wake up in agony, and as a result I always know I'm in for weeks of sleep disruption and exhaustion when that time of year comes around. Despite all that i do feel cautiously optimistic. I've been lucky enough to meet 2 people irl who have suffered from cluster, one of whom has had chronic cluster since they were 13. Both of them found a specific regimen of psychedelics which fully avoids their attacks almost every year. So I'm hopeful that it might just be a matter of the right drug, the right dose, the right timing. I hope it ends up being the same for you. In case it's helpful to you or anyone else: one more option for psychedic treatment, and actually one of the safest and most legal options, is LSA derived from flower seeds. This is what saved my chronic cluster friend. I hope you're doing well, and thanks again for sharing your experience.

@ishpatoon 2 года назад

Holy shit. Thank you. I was just browsing cluster videos as I'm sure we've all done. If nothing goes astray, I'm due for a February/March hit. They last for 45 mins on the dot - not a minute sooner or longer - and usually about 3 a day for 2 months. Two of the 3 I wake up screaming. Watching you on this video, you know what I experience. It's so bad that at this moment, I'm crying and scared and I'm not even expecting them for another 5 months. I've wanted to do a video like yours to spread awareness because we need help, but you're a bit braver than me. I've never heard of your channel or name before, but I want to personally say that I hope you can find something other than misery and I pray that science stops ignoring us. Worst pain known to human = ignorance...that gets really f'in old really damn quick. I'm inspired by your effort here and I plan to do the same. I need to spread awareness to soothe others like you just did for me. God bless you and I wish I had the correct words to take your pain away. If you know of any new research or anywhere online or offline where I can start shouting from the rooftops about us I'm sitting here with open ears. We need help. Help. Please help.

@yourfoodie89 3 года назад

Hi there, my heart goes out to you and thank you for posting this. My husband is new to the pain from having no headaches of any kind ever, to having what he describes as a headache that started last nov 2020 and just hasn’t stopped. He is in his 6th month of straight pain, he seems to be “the healthiest human” as per his tests and no medication or treatment works. He says the pain has never ceased, only fluctuates in intensity usually between a 6 and 10 on a scale of 1-10. He has also experienced brain fog in addition to the pain. Sending you love and positive vibes. Praying for a cure or at least affective treatment 🙏🏽

@C-commerce 3 года назад

Whoa! Someone that actually understands how it feels. Incredibly accurate and emotional video. I have had them over 8 years. Mine are seasonal and I was diagnosed by an MRI. I too have some health issues and survived a aortic dissection. Because of this I am so happy to be alive. These clusters I'd rather deal with it by natural oxygen or something besides LSD or mushrooms. The trips are not worth it. When the clusters happen remind yourself what you are grateful for. Talk to yourself about goals, ideas, and use these to realize if you can handle clusters you can handle anything!

@Diana-ce7ne 6 месяцев назад

I understand your pain I have cluster headaches too and you are not alone I'm with you and everyone who is suffering from cluster headaches we will fight this tolerance of this pain is beyond word to describe but we can do it pray for a cure before we go down the deep end remember your life is more than a headaches you have friends family who needs you if anyone of you have it at it limit I'm just here to help you I'm praying for all of us from suffering from this horrible headaches and migraines

@iancattell2667 3 года назад

Nine years a sufferer. Multiple attacks a day, every day. It's the worst pain I've ever experienced. You have my sympathy. I tried mushrooms and, like you, they also stopped working after a few months. Then I discovered a condition called Histamine Intolerance. I tried the recommended low histamine diet and the headaches started to subside. The intensity and duration immediately started to diminish and eventually the frequency dropped too. I've now been almost headache free for over six months. It's a tough diet to stick to but it seems to have worked for me. I urge you to look into it. A Google search will lead you in the right direction. Good luck.

@jxhnzeevy3735 2 года назад

also i wanted to say that jackie youre a seriously brave girl for posting this, it was really insiring for everyone who suffers from pains, i don't know much about cluster heads which you hate this name an for a good reason but i know what is seriously chronic i'llness is and finding surpising pain each day that makes you just wanna die and having suicidal thoughs or ideas, anyhow i thank you for sharing this, it gave me alot of inspirition and feel like i'm not the only last asshole who is suffering in the world and want to through myself from some random rooftop i thank you and i also saw youre latest videos you look amazing and having a reach social life and a charmind hollywood personallity i wish you all the best and happy you found youre place and peace in this world i wish you good luck prosperity and keep that happy smile and place you've created for yourself, i guess you had the right kind of help from the right people :) good luck!

@areed6708 3 месяца назад

Sweetheart I'm so sorry you have to suffer with this like we do. I've been getting them on my right side since I was 20 and I'm 33 now and it's a very misunderstood condition. They make a huge impact on your work and relationships. I feel you when you say you hate them being called headaches, I can't count how many times I was having an attack and someone asked if I wanted an ibuprofen. The only person i know who has had them was my father. He's 60 now and hasnt had them for years so im hoping these things die down with age. I also tried mushrooms and lsd with the exact same result as you. They worked at first and then they didn't. You're not the only one desperate for help just know you're not alone here!

@justinmcleod2063 2 месяца назад

I was diagnosed with these about 2 years I’ve believe now or a little over. I’m frightened and scared of them hate it while I was working walking around holding my head all day crying. At times went to the back in an office/ break room pacing back and forth holding my head crying other times trying to sit down rocking back and forth and off an on trying to hold a cold water bottle on head. Co-workers an managers were concerned for a long while. At the time had 2 different mangers leaving to bring me into the er 1 of them twice. Another time weeks later different managers ended up calling the ambulance to come for me an haul off. Weeks to months later was put on my own oxygen with a decent amount of tanks about 5-6 an at first was reordering for refills for each week. Months later died down where I used left often an no more er room. ( primary/neurologist only) I had multiple a day sometimes 1-2 usually more as well of 1-2 days very rarely 3 days in between. Everyday for about a year or just a little over a year. Lost my job after a while then lost few other jobs as well I want to work but struggling to hold one an keep. Still as I write this, however it’s more manageable now an maintained some for past 4-6 months now at least. I do still get them but 1-2 not nearly as long usually an not nearly as intense. If not having one may go few days without but bright lights and blue light definitely triggers mine now wear different colored sunglasses indoors/outdoors. Been a blessing lately from going from that to this,I’m glad it did when it did cause my thoughts and everything else wasn’t in the right place I couldn’t keep going like that everyday multiple times a day for a year. So the 1-2 I may get now is still a relief but each time My thoughts is oh no is it starting again like before just as bad. Complete fear changed my life fast outta no where. However I do tend to think how things were then with it to now not fully better may never will be but better than it was. For me bad in the morning as soon as I wake up, again at noon, back an forth to late afternoons,early evening or late evening. Sometimes at each time frame other times it was one or the other different intensity and time duration. Never fully woke me from sleep that I remember but as soon as I wake up and the shadows before or after at times lasted all day would have that one side all numbness/tingly an sometimes nothing but a lot of pressure which was really painful as well

@pedrowebgecko Год назад

I feel for you! You can't explain cluster headache, even though your description is very accurate and moves me to tears. No one who doesn't suffer from it can understand. I have been suffering from cluster headache for about 10 years. The worst was in 2017. 8 to 10 attacks a day for 6 months. Every day! I was already so exhausted. Oxygen and zolmitriptan was the only thing that could help me. For the last three years I've only had attacks rarely, for a few days, just once a year. I can somehow get over that. I wish everyone who suffers from it that it will stop at some point. I really feel for you......Stay strong....

@rinaaiello583 3 года назад

I feel you. I’m so sorry I’ve been going through the same thing. I’m crying listening to your story. I’ve been going to the chiropractor and massage and acupuncture.. I feel so much better. Give it a try..❤️🙏

@XxGuiltyx2 4 года назад

This is the realest shit I’ve ever seen. You’re so brave for doing this. I love you! Stay strong. This is not an easy thing to go through.. and I pray that a cure is found 💕💕💕💕💕💕💕💕!!!!!

@JackieHollywood 4 года назад

thank you so much

@charlieulmer-scrantonscomm2388 3 года назад

Damn! Been suffering for 6 months! Dr after Dr had no answers, they guessed sinuses, then wisdom tooth, I have been trying everything and 2 days ago found out about cluster headaches. I have it around my right eye too. Not to the pain level you are experiencing. Praying for you!

@yolliecurt 3 года назад

This was so helpful I have just recently started experiencing pain penetrating from my right eye to the back of my end. I went to see a Neurologist on 3/24 and I told him about it and his response was well migraines usually occur on one side. So he diagnosed me with migraines. So I’m doing my own research and it’s seems like I may have cluster headaches. Thank you so much for posting your experience.

@mrwonderful172001 Год назад

Sista I've been dealing with these headaches for 24 years. Worst pain I've ever felt in my life. Mine seem to be episodic that come on every couple years. I finally found a doctor, a couple years ago, that prescribed me the injectable sumatriptan. It was the first time I had ever had relief during a cycle.

@andrewzappara259 4 года назад

Been suffering from clusters for 3 years at least once every single day so i feel yuor pain my dear.I know what works for one doesnt work for eveyone but when your in agony your willing to try anything so try this. Pour icey cold water on the eye that it occurs on several times a day this quet often stops it occuring and even if it does still happen it doesnt seem to be as intense and doesnt seem to last as long.I hope this gives you some relief.Let me know if this helps

@pobrez7649 3 года назад

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-9mQSO4Tzbwk.html

@mohammadabubakarmohammadab7254 2 года назад

Some people may be relife with hot water and some one may be with ice and cold water.....but the hot water blood dose not clotes even the cold water

@smokeguide9716 3 года назад

thanks for having the courage to make and share this video it does help me a little and probably alot of people it began on my 19 with one attack a week now after 7 years its up to 8 times a day with no down period sometimes its just hard to keep yourself going when you know whats comming again and again

@martiniglleshaj 4 года назад

Hello I suffer from cluster headaches as well you are not alone it soo painful and I go through the same things you are going through I honestly feel helpless at times I am now in a cycle and it’s over 2 months sometimes I get em 8 times in one night and go through 4 tanks of oxygen I have always done shrooms too break the cycle but this time it didn’t help I recently went to the doctor and she prescribed me verapomil to take daily in the morning it’s a blood pressure medicine she also gave me a nasal spray witch I’m waiting for the pharmacy to have in stock oxygen helps me most of the time but sometimes it doesn’t ice packs also help sooth the pain for me I just wish there was a cure already I honestly believe we are some of the strongest people to live with pain like this you are so strong and I hope your clusters go away and never return if anyone has any information please share we can all help each other 💪🏼💪🏼💪🏼

@Orwell-84 Год назад

Hi Jackie. Just saw youre Video. Send you alot of Love. I suffer the same disease. I understand you. You are in my heart. You are not allone. Take good care of you. A big hug from switzerland from Roger, one of youre brothers.

@AnyaSF415 3 года назад

Jackie, I'm Soo fucking sorry that you have to deal with this unbearable pain. Thank you for being so brave and sharing this... I wish I could help you... I'm so sorry, this hurts my heart... 😔❤️ If you ever need someone to vent to, I'm here!!

@rebekahroyal2679 Год назад

OMGGGG 🤯🤯 This would explain what I'm experiencing 🥺😢 Thank You for sharing your story 💖

@charitynyawana8855 2 года назад

I have had these headaches as long as I can remember. You are not alone.stay strong.

@heather4641 4 года назад

My husband is having one right now and I feel so helpless. I literally just have to watch him suffer 😟. It sucks having a partner with a chronic condition and there is just absolutely NOTHING you can do. Tears my heart apart.

@UrCupOfJo16 4 года назад

My boyfriend has them and I also feel helpless. I’m trying everything in my power to help him. He only gets them during spring but we literally dread when it comes.

@heather4641 4 года назад

@@UrCupOfJo16 I feel for you guys. It's so debilitating and frustrating.

@candacebradley3375 4 года назад

Same! My husband suffers from them, it’s so hard to know what to do. We have kids and it’s hard to know what we as a family need to do to help him. It really effects the whole family.

@allenhall1216 4 года назад

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-Jv1lG417LKg.html

@Hariharan-ql4sg 4 года назад

Try homeopathy belladonna 30 sister it will help you take 5 drops of medicine in 1 spoon of water for thrice a day

@galaysh220 3 года назад

Hey sister- you’re not alone. My heart broke for you when you described the bad acid trip that lasted 15hrs and didn’t even offer any relief, I hate hallucinogens too, I’ve never done shrooms or acid or anything so I can’t bring myself to even give those a try when I’m debilitated... I’m in a cluster period right now, had the worst attack of my life last weekend, a shadow when I woke up yesterday morning, and another cluster headache today from 2am-6am. This is so extremely frustrating and I beg God that this condition would just go away forever.

@alisonderrick1067 4 дня назад

🙏 ❤

@TerminallyPerky 4 года назад

God... I am so sorry. I was told I might have this type...but I definitely do not. I cant even imagine. A migraine makes me bedridden but this is torture. I hope you are doing the best you possibly can. You are a very strong lady. Jeezus.

@JLBHabs 3 года назад

Hey, im sorry you're going through this as well. If you ever need to talk or vent Im a chronic sufferer and would love to have someone to talk to that fully understands what it's like. Have a good day and I hope you're doing okay.

@frenzleo6374 3 года назад

I can feel your pain. I am having it too at this moment. Mine happens every 9am in the morning EVERYDAY! It sucks because I can't do anything about it. Let's be strong!

@itss_justkiana1621 2 года назад

I hope you’re doing better now❤️!

@tomatkinson3989 3 года назад

Thank you for being so brave and putting this out there 😍❤️

@tomatkinson3989 3 года назад

I've been using a back massager on my head and ice packs and they do ease it

@Rosalies_ 15 дней назад

This hits hard. It’s nice to be able to record and release footage during an episode (not an attack!) because it provides immense perspective. My episodes have been in either spring or fall so it’s high alert season for me

@chrisphillips2788 Год назад

I feel your pain. 20 years now. You got this girl!! Hang in there!

@johnnybpena 3 года назад

Yo, *sending virtual hugs* for making this. I’ve been wanting to do a video just like this for years but couldn’t bring myself to it. I’m 31, and I’ve been a cluster head since as long as I can remember as a little child. People won’t ever know or fully understand how this “headache” is actually an excruciating painful game of chess. The more you fight it, the angrier it seems to get. You are not alone! If you can handle energy drinks, try a really cold can of Rockstar Energy Drink, chugged quickly the second you feel it coming. Something about the quick Taurine consumption mixed with the cooling effects of the liquid is a very affective abortive. Let’s talk sometime.

@mrox5127 3 года назад

I needed this video right now. Thank you. I get mine usually around 10/11PM ish usually during April-May, not multiple ones per day, I get the ones that last for 30min-2h (longest episode was 7strong 30min - 2h, 18 hours total down time, that is 18 hours of non-stop stress/pain/fear and panic.)it goes in waves but it never really 'ends' fully, only position that I can be in is crouched over in the shower letting water run over my head - somehow that stimulates me so that I can endure. The one thing that is the hardest for me is my fear of them now, I felt compelled to write this after I've cried with you for 15minutes just remembering and understanding what you're talking about, the fear of the pain, getting triggered every time one of my nostrils start clogging or one tear canal start running, every time I get a headache I start pacing hoping it doesn't turn into living hell. I'm sorry for your pain and this is for everyone in the same boat, something we really don't get often but I feel you. I do understand.

@spud69g 3 года назад

Hum the OM chant next time you feel them coming on, it helps me when I feel them coming on. Lessens the time I suffer. And gotta say, THANK YOU for speaking about this the way you did. Last time I spoke with my doctor I was a wreck, could barely talk from anxiety just thinking about these, and knowing I'm not alone with those fears means so much.

@joonasnaski9513 2 года назад

Its so sad to see others have this too. I feel your pain. Ive had that since i was 14 which is rare. You all will make it... It may be hard but you can still make it.

@simonmichaelmurphy9563 Месяц назад

I have been struggling with cluster for 35 years. I feel you and I understand you 100%. Wishing you long and pain free times ahead. 🙏❤

@Wordaroundthebonfire 2 года назад

I just needed to hear this. Thanks for sharing.

@antoniogiop 4 года назад

Just got done my 1 and 1/2 month cycle after 3 years of dormancy. And my doctor stopped prescribing my injectable imatrex due to side effect concerns so I'm also frightened daily of the attacks. They always come back, they are relentless, and they are unforgiving. Stay strong love :( you are not alone. Dont expect others to understand your pain who dont get them. You're in your own lane with these and you will perservere I promise you that. Dont give up.

@antoniogiop 4 года назад

Also try high flow oxygen it works for almost everyone if your insurance can cover it and its your healthiest option.

@pobrez7649 3 года назад

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-9mQSO4Tzbwk.html

@megabrains4382 2 года назад

Your so strong to record and tell us all of this with your headaches but guess what I love u and so does all these ppl so stay a beautiful queen❤️ and don’t give up

@andreacirillo7528 2 года назад

It is normal to feel helpless, I suffer with the same condition and i totally understand. I hope you found a treatment that works for you. Don't give up!!!

@alyssabaldwin5526 3 года назад

Thank you so much for posting this extremely courageous video. I have had episodic cluster headaches for 14 years now. I'm currently on week 8 of my current cluster after 22 months of remission. I empathize for you more than anyone could. I am not sure if you have tried oxygen, but look into it. It helps relieve, doesn't cure, but offers relief. Make sure to get a really high flow 15L/min for 20 mins ❤️❤️❤️. Stay strong and thank you again for voicing our indescribable struggle. Also based on my research, don't take mushrooms closer than 4-5 days apart. It will cancel out the effectiveness.

@tonylambert4260 Месяц назад

You are so brave to make your video. I don't think they understand what the pain is or does . those of us that do are here for you

@amberdingerson3462 4 года назад

Hey! I'm a young female and iv been dealing with CH since i was 18. I normally get mine in May june and July the last 2 years i have been taking magnesium about a month prior to my cycle beginning and it has helped tremendously! The last cycle I only experienced maybe three or four bad ones. Unfortunately it is December and I am a week in another cycle. I'm super confused because I've never had them at this time of year I guess that's just how it is for me now. Since I wasn't prepared and haven't been taking the magnesium I am suffering so bad right now. Last night I didn't even get two hours of sleep because every time I would start to fall asleep one would come on and I'd have to get up and start walking around the house. I just want to say that you are not alone and you are so brave for making this video it has made me feel like I'm not alone in this. I have not been to the doctor yet because up until 2 years ago I didn't know anything about cluster headaches. I'm hoping to at least get some oxygen to try... The only thing that helps relieve the pain as its happening is my rice sock. I put it around my neck and either walk around the house or sit in a chair with my back as straight as I can be. But the heat helps best for me. Praying that you find some relief and idk how long ago you made this but if you have any new idea please let me know cause this has put my life on halt and I have 2 toddlers to take care of and its just hard you already know though.

@allenhall1216 4 года назад

CHSG on facebook, look into oxygen therapy as an abortive, please share, they saved my life

@amberdingerson3462 4 года назад

@@allenhall1216 I just finally busted my cycle since I made this comment. I used shrooms twice and the second time it worked! I haven't been able to get in with a Dr but as soon as I'm able to and get refered to a Neuro I'm asking for oxygen therapy. Thanks for your reply!

@TH-bj1pb 2 месяца назад

Hope you are doing good. It feels unreal thinking back on a episode, it's like having a split persona. Surrealistic and out of body. Sleep depravation is extreme mixed with the dark thoughts. It's still fresh in mind, I'm not yet fully recovered, but now I have had 4 nights of sleep now after 14 days of terror. On friday I took 1,1 grams of mushroom and got 9 hours of sleep, on saturday I took two doses of 1g during the day and got 12 hours of sleep. Now I have had two more nights with sleep and no medication. I could finally relax. Still having a luming shadow, but currently it's not settling. It felt like my brain and neck bathed in balsam when I took the mushrooms, I cried from the relief.

@justtye8604 4 года назад

Jackie thank you I needed this today

@LuxonRadio 4 года назад

You are so brave, it is hard to explain what you feel when other humans can't see it. Invisible Illness' are just horrific. Can I share this? Thank you for sharing your story! I just can' imagine the pain, the anxiety, the panic....I know that others will find this and feel justified knowing they are not alone!

@JackieHollywood 4 года назад

thanks love, yes you can absolutely share. thats why i posted it, even though it scared me to show myself in this light... maybe i can help someone, maybe someone can help me. i appreciate you

@01dirtmonkey 3 года назад

Great informative video. I’m currently in a cycle of clusters, woke up at 2:30am with one today. A Can of monster energy and a imigran injection isn’t the nicest thing to have to do at that time of the morning. I hate the name cluster headache. It’s so much more than a headache and the dread of the next day just knowing it’s coming is horrible. Also not nice for my partner who is terrified whilst I’m having an attack as I’m so aggravated and she’s always worried I’ll do something stupid. If somebody handed me a loaded gun during a cluster I wouldn’t hesitate to use it. I feel so bad for you and hope you have somebody to support you throughout your attacks.

@JrellNY 3 года назад

you have officially made me brave enough to make a video about cluster headaches. I have to let people know about my pain and struggle.enough is enough. i had 4 clusters last night and im fed up

@AlishaPurkis 4 месяца назад

Oh gosh so sorry, hugs 🤗. I have headaches during my monthly. I know how you feel girl. It's not fun.

@MrBlackstar1969 3 года назад

I'm with you unfortunately Stay strong sister

@TwixOSRS 3 года назад

Cluster head of 5 years here: After almost a year my cycle is back and relentless. It really makes me think how much I took for granted when I'm in remission from these debilitating clusters. My cycle seems to begin in the summer and this truly is the most painful thing I have ever suffered with. I would never wish this upon anyone. It also it so difficult being a CH because when you explain Cluster Headache, people automatically assume its just a headache and we are being over dramatic which can lead to such frustration and sadness. People who don't deal with these don't know how lucky they truly are. I'm praying these cycle ends soon because my goodness dealing with these 1-3 times a day is devastating. Also that moment of relief after the cluster finally ends really makes you appreciate life when we don't have them - but also disheartening because you know they will eventually come back 😪. I hate this illness, but whoever reading this - you aren't alone. I know we don't know each other but I love you all. Please stay strong. God have mercy on us, because we truly need relief from this. I also hope that the medical community starts discovering some breakthroughs for this because everything I've tried thus far does not work.

@stevec6934 3 года назад

Thank you for your brave video. I just finished my annual cluster (190 attacks over 10 weeks). Mine come exactly one year after the end of the previous cluster so the time of year moves forward each time. I particularly hate getting them at Christmas, but every time is a nightmare. I record every single headache in my diary and have done so for the last five cycles to try to establish a pattern and feel I have some sort of control (ha ha Ha I don’t). I’m 53 now & have had them since my 30s. Now I simply resign myself to wiping 10 weeks of the year every year and living in fear & pain for the period. I don’t know how to find magic mushrooms But believe that it is probably the most effective treatment from what I have heard and read. When you said the psilocybin pills didn’t work for you, that kind of blew my fantasy about one day finding a treatment that works. One thing I do during an attack is talk out loud to myself (while holding my face and rocking), in an attempt to describe the pain. Of course, it doesn’t actually help the pain but it helps me rationalise what’s happening to me. One thing I tell myself during an attack is “ this is temporary and will end soon, it’s not doing physical damage, I can handle it, it will soon be over”. I am appreciative of all the brave people who post their stories on RU-vid because it makes me feel less alone. It is a very lonely disease to have and I feel for us all. Fight on and stay strong. Best of luck to us all.

@Dan-il8lv 2 года назад

I'm having too and I start crying insane moment with you .I have it right now .Stay strong girl it will be a cure for us .god help us

@stuartgifford8672 4 года назад

Well done for doing the video btw, good to talk about it and share ur experiences.

@sylvomordor9338 4 года назад

Im chronic. Every day for the past 8 years. I find eating zero carb makes things easier. It doesent go away, but its a more manageable pain. I have been able to find a job and am working full time :) also alot of distraction; find hobbies that you can get really invested into.

@julisa141 3 года назад

Hey your story really helped me. I have one now. Trying to cope is so hard.

@m2270e8 7 месяцев назад

You are awesome, you have helped me at least in knowing i am not alone

@lewishillier2115 2 года назад

I've been trawling youtube all day for some sort of help or answers. Every pain and sensation you mentioned I have, right down to the jaw and teeth IM IN SUCH AGONY. I've had 4 attacks in 24hrs and been crying down the phone to my GP doctor about the sumatriptan tablets not working anymore so I've been prescribed a sumatriptan auto injector which I'm yet to try. Im a self employed builder with a mortgage and I'm going to lose everything because of these rightly named suicide headaches at this rate

@RagTre283 3 года назад

Thanks for sharing. You’re not alone. 💪👊

@Studer75 Год назад

Dealt with damn things for 20+ years. You explained it perfectly and you’re absolutely right about the name. “Cluster headaches” doesn’t even come close to being the right description. These things are hell on earth and I wouldn’t wish them on my worst enemy.

@SM-vb8fj 12 дней назад

Thank you so much for posting this

@adamogilvie6951 3 года назад

I just watched a vid of a guy having an attack on here. Omg, I felt like I was I was gonna start crying. I suffer from migraines, and I know they don't even compare. May God have mercy on all the sufferers of this awful condition. I have heard capsaicin, can help with the pain. God bless you, stay strong.