I Suffer With Cluster Headaches

[@sammyk6202]

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

[@Snow-Stuff]

I've never had one

[@JrellNY]

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]

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

[@teachandfunnstuff3127]

I've never had one, but it terrifies me

[@sammyk6202]

@@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

[@desegenperumalkistasamy4790]

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.

[@bobmarlon9143]

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.

[@CrystalMouse1]

Yep I just got diagnosed an hour ago and I described it as a deadly tooth abscess all over my skull and radiating to my ears and behind one eye. What’s the worst part is when people enter my room and ask me to do something and I’m literally screaming into my pillow! Like C’mon here!

[@maddryan1]

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

[@charlieshaffer472]

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]

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]

@@JrellNY I feel u brother 😥😓😫

[@CHRISFREE84]

I contemplate suicide when I have now

[@Frostified]

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

[@lived5770]

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

[@thaddeusinge556]

Father God I come to u asking u to heal Jackie, myself,and everybody under these comments who suffer with this pain that deeper than any pain we've felt please keep us strong mentally and physically and please delivery us...In Jesus mighty name I pray.... Amen! Luv to u all. I started dealing with CH in 2020...2023...and my 3rd attack just started May 25, 2024 and yes this makes a grown man cry too!💯👏🏾👏🏾👏🏾 Peace,Hope,&Luv.

[@pschuit]

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

[@DavidDavid-gy7ps]

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]

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

[@DavidDavid-gy7ps]

@@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]

@@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]

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 .

[@TH-bj1pb]

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.

[@FosteringW_love]

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]

How do you stop them when they start

[@pobrez7649]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@knife_gun_axe9022]

Give up alcohol and caffeine and your cured

[@aking8477]

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

[@aking8477]

@@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.

[@iancattell2667]

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.

[@rollinclayton]

Hi Flow oxygen (15 liters per minute) is very effective. I have suffered from CH for 17 years now. Neurologist gave a prescription to get a tank at home. Seriously consider getting a high flow oxygen tank

[@ByronBayPrintHouse]

I’m so sorry to hear about your cluster headaches. I tried everything you have and This is not medical advice but I have had them for 15 years, but they used to be much worse than they are now. One night about 7 years ago I was having an episode and I remembered what I heard in a talk ‘What you resist … persists’ So I decided to use my conscious attention and find where the pain is and go into it. I wanted to feel it from its centre. I did and it shifted everything. I know that doesn’t make sense but that’s what I did. I still get them but only every second year and normally when I’m going through something stressful in life. After I went into the pain that night there was a shift from the pain being behind the eye, the intense burning. It’s now mainly the whole left side of my head , my neck and behind the shoulder blade. mainly the head like the whole left side is locked somewhere. I can also feel knots in my shoulder blade, foot and calf. The main thing is I don’t have that burning behind the eye anymore which is a game changer. Cause that’s what I used to have everytime I woke up and the pain was 10/10. I still wake up in the night about 3 - 4 times in a cycle and they can go on for 5 minutes - 1 hour. But it’s not the pain as much as it’s just the exhaustion of my sleep patterns that gets me. I also started meditation just after that night that I felt the pain from the inside and now sometimes I can calm a cluster headache down within 5 minutes and go back to bed. By the morning I don’t have the conscious attention to meditate and focus on deep breathing as I’m just so tired so they are normally my worst ones. I would say that after going into the pain that night the headaches vary from pain of 3/10 - 9/10. I only have the 9/10’s every second or third night. My whole first week on my latest cycle was around 5/10’s and I think they get worse over time because I’m just so tired and can’t focus as deep with meditation breathing and focusing on the inside of my body. I also tend to have a lot of magnesium salt baths during my cluster month. Sometimes everyday and that helps a lot. I wouldn’t say I’m cured yet but that pain behind the eye is gone and everytime I get a cluster period I get better and better at calming through meditation and feeling where the pain is and it calms down so much better. I wish you all the best with this.

[@kristalt6611]

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]

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

[@mabrouk5058]

Please try psylocybins.

[@kristalt6611]

@@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]

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

[@sidmcgee6166]

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.

[@areed6708]

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]

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

[@heathersmith3290]

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.

[@TheDefaultClass]

Been suffering for a few years now. They don’t wake me up thankfully. I’m experimenting with psychedelics right now to see if they lower the frequency. 2 excedrin migraine extra strength + 2 Aleve + a can of caffeinated soda can work sometimes, at least it has for me.

[@kimberlybranch7551]

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

[@Goggalor1990]

I feel like this perfectly illustrates the other side of living with them, which is the emotional toll it takes on you going through an attack and the fear and dread of "when is it going to come back?" It's so draining trying to get through an attack and not worrying about the next

[@TwixOSRS]

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.

[@michaelasykorova1171]

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]

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

[@PeacAndLove]

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

[@Diana-ce7ne]

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

[@drjules888]

Ten years ago, I had a cluster headache ( I didn't know it was a cluster, I assumed it was a really horrific migraine) so bad that my husband had to take me to the E.R. The first thing the nurse did was give me oxygen and within 10-15 minutes, the pain subsided a good 70 %. I was amazed. The doctor examined me and said, "If oxygen gets rid of the pain, you have cluster headaches." So now a Medical Supply Company comes to our house to deliver my oxygen and it works 90% of the time. Many times I fall asleep with the oxygen mask on my face. Please try it. Your insurance should cover it as long as your doctor places the order i with the medical supply company. I hope this helps. God bless.

[@JackieHollywood]

THANK YOU ALL FOR THE COMMENTS AND SUPPORT!!! i want you to know that i read every single comment, i just dont have the time to reply individually. Stay strong guys, I'm with you... and you can always find me on social media (@jackiehollywood) if you want to connect there as well!

[@danielgoldberg5587]

Hi Jackie, thank you for sharing. I am in year 18 of this and currently in my worst stretch. In the middle of an attack right now watching your video. I appreciate you sharing...you are not alone

[@TheOnlyDmDawson]

Wow this all literally just started happening to me like 2 weeks ago.. Thank you for making this!

[@michaelbagwell5360]

Very good results with magic mushrooms.

[@Hunter.Lindsay]

@Benjamin Coussens thanks for sharing!

[@Hunter.Lindsay]

I have had similar experience as you! I was misdiagnosed when I was a kid as having histaminal migraine... But my symptoms are as you described...shrooms did the trick 2 years ago, but not anymore. One thing that does help (IF I am able to catch it in time) is Bang energy drink... I guess the caffeine does something? I dunno, but hopefully I don't have a heart attack from drinking three a day... still worth the risk.

[@Davidscustomdiecast]

My name is Dave and I have the same episodic cluster headaches that you have! Thank you for posting this video. I have wanted to do a video like this but I’m not good at it! I’m going to share this with my friends so they can understand what I’m going through. I hope we can find some relief some day. Hang in there and thank you again!

[@tccrosbyy]

Praying for you, Dave. You guys are warriors.

[@deyanv]

@David see my answer. Now there are many options to prevent the attacks and stop the attacks when they occur

[@andrewzappara259]

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]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@mohammadabubakarmohammadab7254]

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

[@Jackie_sux]

Hey I hope you’re doing okay. This is helping me get through an episode right now. Thank you for your vulnerability 💖

[@Naized]

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

[@vangoghsseveredear]

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]

Van Goghs Severed Ear god bless you

[@pobrez7649]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@Isinforblood]

Facts 🙄🙄

[@Bernardlaurent]

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.

[@thepinkmimosa]

This video has nearly brought me to tears. Comparing it to ice cream headaches aka brain freeze is the way I've been explaining it for years, closest sensation I've ever felt, but like u said-- so much worse. FIrst started when I was around 14,, I'm female, I'm 37 now . I've went through life until very recently never understanding them , believing it was migraines or something sinister that only I seemed to have. The waves of pain will often turn my stomach, and I'll be so sick, especially if I've recently eaten , I'll be roasting hot, sweats breaking out all over. Sometimes my legs will feel weak like the pain will cause me to sway. It's affected my work, my son has been scared on a few occasions, I went through the first 10 years of his life with minor outbreaks until last year when it blew up like never had before,,when I finally cracked and presented my doctor with all the research I'd done and pretty much self diagnosed, the triptan nasal sprays have been a godsend but you have to wait until you feel it coming on, it's still so so debilitating. It had been so erratic and spaced out over the years that it's only in the last couple years I've come to realise the seasonal triggers and also that flying or changes in altitude (high up in the Scottish countryside on a bus and ears popped, had an attack) were even triggers at all. Scared to get on a plane now , keep thinking if I go on holiday what's the point, I'll be in agony. No one who hasn't experienced this can even imagine. It's hell living it, hell explaining it. So many mixed emotions in knowing you aren't alone in something you wouldn't wish on anyone 😢

[@johnnybpena]

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.

[@OK-mi3rm]

I had my first cluster headache when I was 19 years old and i did know what is happening to me better yet my eyeball, I’m 35 now and bin through all kinds of treatments. Those 5 months every year are terrible!! I get them 7-12 times a day. I know what you are going through, I feel your pain. Stay strong!!

[@jonathandelima9661]

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

[@tonylambert4260]

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

[@enockndanyi5685]

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

[@andreaallen1362]

Two hours! this poor girl doesn't deserve this. My heart goes out to anyone dealing with this horrible condition.

[@sylvomordor9338]

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.

[@ericbenenati13]

I have been dealing with cluster headaches since I was about 11 or 12 years old. Besides the pain that is best described as being tortured for 1-2 hours. The daily doom felt by the anxiety brought on by the anticipation of the attack during a cluster period is truly shattering. I have found that sumatriptan has been the only thing to help when it gets unbearable. I hope in the future there is a drug that helps as well as sumatriptan but doesn't have the side effects and effects on the cardiovascular system.

[@Strange_Club]

I hate to tell you this, but as great as Sumatriptan, as great as it is at first, will cause the attacks to become more intense and more frequent over time.

[@ryandenton6216]

Yes I get rebound headaches from taking too much sumatriptan. Or rizatriptan. Botox every 3 months helps.

[@shaundramcdonall204]

I’ve been going thru this for over 25 years!!! And like her, trying to explain to others or jobs it’s like no one gets it!!! I cry even watching a video or someone talk about it. Sometimes I wonder can I even live through another one… I just keep praying.. praying… praying… praying.

[@galaysh220]

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]

🙏 ❤

[@ryandenton6216]

I’ve had this condition since I was 15. I’m 34 now and I’ve been dealing with this for a long time . Stay strong I feel your pain.

[@vangoghsseveredear]

Seriously I get one or two a day. In the spring. I get them in the mornings as well. I cant fucking imagine being chronic. My heart goes out to all of you chronic sufferers because I wouldn't want to live if I had these daily. I dont even want to imagine it.

[@fouadfalmir1113]

I know how you feel. I have been suffering from cluster headaches since 2010. At first, I thought I had a sinus problem. In 2019, I stumbled upon a video on KZbin that talked about cluster headaches and their symptoms. Now at least I know exactly what I am suffering from. This disease changed my life for the worse.

[@JoesBALLIN1]

I was diagnosed with cluster headaches at age 22 am 33 now a cold can of red bull to drink a ice pack on the area where it is most painful and a fan to move the air around me has been the fastest way I’ve been able to manage them. They will never be gone but can be managed🤞

[@greedyjoe9677]

How do u manage them

[@davidsanchez-bu9un]

@@greedyjoe9677 Hi there, according to some comments: 1) 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. 2) monster energy drink: Try drinking 1/2 a can to start with so you dont destroy your heart and kidneys. Taurine tablets didn't help me any so I'm not sure what the magic is. Pls, give it a try and let me know it it works for you.

[@The-kp8rz]

This is me. Not diagnosed but I have been researching to find out what’s happening to me. The exact symptoms everything you said is true

[@samtron5000]

It is the exact same for me. The ice pick. That’s how I always describe it. I feel insulted when people say “oh migraines” it’s my time right now. I had to leave work because I get it at 4am, and 3pm. It’s day 1 of ????

[@shakirwatson9764]

11AM and 6PM for me for a month

[@blownaparte810]

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.

[@Groovygal2026]

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!

[@smokiebaer]

40 something years ago I had my 1st cluster headache. After 12 year of clueless doctors and many different drugs, I came across a doctor that had read about a cortisone injection for cluster headaches just that week. Desperately seeking anything I agreed to try. I got the injection in what she called the cluster button. A bump between the back of my head and neck. Since that injection I have had 3 tiny tiny cluster headaches. 30 plus years of being headache free and still going.

[@valentinacardona173]

I had 6 brain surgeries and have suffered of chronic headaches for 8 years but every time I see someone with cluster I know my pain is nothing compare to yours. It seems like a nightmare and I am SO sorry you have to suffer this much without relief :(

[@ilqar887]

What was the cause

[@Rahimzjanovs]

Omg girl, feel for you badly! Please stay strong ❤️ I've had my CH for about 12 years now. For the first 8 years, I was told and thought that it was just a migraine. But with my own research, I found that it is actually a CH. Nothing have helped to treat it, I just suffer with it and you know the rest. I consider myself luckier than others as mine cluster headache cycle is really weird and has at least 1 year break between them, some get it as often as every 3 months

[@stevepeck7223]

I'm also a CH sufferer, it's been going on for me [suffering] since in my 20's [I'm now 63]. To watch & hear this breaks my heart. :-(

[@amberdingerson3462]

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]

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

[@amberdingerson3462]

@@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!

[@HollowSpiriit]

I understand how painful they are, although I’m lucky to say I’ve only had a cluster headache once when I was very young, I remember it waking me up, it felt like my head was being slammed against metal or brick multiple times like pulses, it was so bad that I was banging my head against a wall because it was the only way I could somewhat cope with it, even though doing that only made it worse. So yeah when something is so painful that you are causing yourself more pain, says a lot about what it’s like to experience it. All I can say is I’m lucky.

[@roainwolf997]

I just started getting them in late August when my sister was admitted into the hospital due to a stroke and got worse when she passed away in September 4 I'm still dealing with the headaches and its already November 14, sometimes I just wanna give up already cuz of the pain, so much stress this year losing 3 family members, working two jobs being used in a relationship and being led on in another relationship and then the stress plus high blood pressure triggered the cluster headaches I just wanna give up but I cant cuz me and my sister are the guardians to are older sister daughter I wish the headaches would go away......

[@kathrint.2822]

don’t! you’re so strong and you came this far. times will get better i promise :) i believe in you!

[@genierpenagos5079]

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.

[@lisacuculic3578]

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.💓💞💓💖🤯🤯💓💓💓

[@JrellNY]

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

[@charlieulmer-scrantonscomm2388]

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!

[@smol9907]

I had clusterheadaches for 1,5 year everyday constantly every minute of those days then it finally stopped. (from age 19 to 20,5) Once that long period was finally over i started getting them for only two hours at a time per attack for the past 8 years until a few days ago when it happened and lasted 3 days (today it stopped again) And i was scared shitless it would last another year+ again. Love to you.

[@yolliecurt]

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]

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.

[@JaneSutton-l3e]

I have suffered with cluster headaches for 4 years. I know the pain. Mine can last for over 12 hours. I have got oxygen and medication daily. I injection with sumatriptan when I wake up with them , which helps most of the time, but when it doesn't I just wish I could go asleep and never wake up. I can understand why it's called a suicide headache . I just hope they can find a cure .

[@heather4641]

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]

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]

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

[@candacebradley3375]

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]

kzbin.info/www/bejne/gKeUnXpqZpx_gck

[@Hariharan-ql4sg]

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

[@getbusydrizzy5296]

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

[@danielmarkiewicz403]

I had the same headaches as You , after 30 years and trying everything , I had 3 sessions of Acupuncture , now I haven't had a cluster headache , I have all the symptoms but No pain, might be worth a try!!!

[@JackieHollywood]

daniel markiewicz what symptoms do you get without pain?

[@danielmarkiewicz403]

@@JackieHollywood Stufiness, metallic taste in mouth, Seeing spangles ( pulsating purple/white flashes in eyesight starting from the side that increase to a maximun then receding and diminishing ) .My headaches ended with the acupuncture about 25 years ago and never came back. I completely understand what You are going thru, only those who have clusters would know this. I heard that there are new treatments for clusters ,but you would have to really search for these . You are only the second person that I know that are going to this hell.

[@5minutemajor141]

I just found this video. I’ve had cluster headaches now for 8 years and I’m currently going through a horrific stretch of them, going on 8 weeks of having 1 or 2 daily. I got 53 seconds into this video and instantly knew that you get it. saying they arent headaches and wish they were called something else is a statement ive made hundreds of times👏🏽👏🏽👏🏽

[@lurenisportes]

mines last about 2hrs 😭😭😭😭😭, i was getting them once a week ,now I'm having them every other day, ,Love to all of the cluster headaches suffers ❤❤

[@mahanassar2580]

Blood patches are working on all types of headaches. Look into "Leak Week" Any old injuries could trigger them etc. Please just do the research. Thanks

[@pobrez7649]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@weronikasteinbach1052]

Had mine this morning - about 3 hours ☹️glad I’m back but I’m so scared again to sleep ☹️

[@ybmountaingirl1970]

💞

[@simonmichaelmurphy9563]

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. 🙏❤

[@browneyez5150]

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

[@JackieHollywood]

thank you!

[@C-commerce]

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!

[@ameliamoreno5644]

I used to suffer from cluster headaches almost every day. Started in my early 20s. I would get them for weeks almost every day. and they would go away for about a few weeks and then come back. I would have to leave work early or call off work all the time. And they would think I was exaggerating. I was desperate to try anything so I started doing the ketogenic diet and they’ve disappeared since.

[@ogechiagada6213]

Really?! Could you elaborate? How long has it been gone?

[@Cecy_MessyIV]

Currently going through them right now. My eye is completely swollen shut my voice is gone from screaming and crying. I literally get suicidal with these and I can't take it. I am so helpless but I gotta pull through for my daughter. Don't cry mama we r strong.

[@frenzleo6374]

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]

I hope you’re doing better now❤️!

[@gimmmedat]

I’m 19, started getting them last year and I can say… after multiple sports injuries. Tears. Breaks. Surgeries. Etc. my cluster migraines are hands down the worst pain I’ve ever had to go through so far. Literally just makes me wanna die. As terrible as it sounds I legit just be wanting to die while I have clusters

[@JLBHabs]

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.

[@margariettabenton8862]

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.

[@julisa141]

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

[@gustavburger549]

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!!

[@berriosenid]

Your pain is the pain of so many people and my pain as well. We need help. This is no regular headache. 😢

[@kyledawsey1358]

You are not alone friend. You just HAVE TO survive it. Thats all we can do.

[@jacobburgess4810]

Lol when you said other people "say they have them". I feel the same way, like no you don't, nobody knows this pain. I'll pray for you tonight but stay strong and I'll try to do the same. 14 years for me every November or December but for some reason it pushed out to February this year and I falsely thought I had hit my first year without one. I'm on my fourth week now which is usally around when they stop so really hoping for that at the end of the week. My range is 2-5 attacks a day for up to a month typically 45 mins each, can't decide if 1- 2hr episode would be better than 2-5 of the 45 minute episodes would be better but hell there's no better option really just same sucky bullshit. Reach out anytime and never give up 💪

[@Skyskythethearin]

I am a chronic cluster headache sufferer it’s been 5 years with as little as 2 day break!! I am at my last resort

[@anthonymeans1975]

I've been having them for 10yrs now & nothing helps me but hot showers with the water hitting my neck & head, wrapping a towel around my head & twisting it to apply pressure & using Zomig nasal spray.

[@kimberlybranch7551]

Same with the hot shower remedy. I haven't tried the nasal spray. Is this OTC or prescription?

[@chrislopez7939]

HOT showers

[@antoniogiop]

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]

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

[@pobrez7649]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@youngbradley26]

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

[@Abuisraili55]

I understand you, suffer with it since I'm a child and was only diagnosed last year. Sumatriptan really helps to block the pain if I inject right when it starts. Steroids also help block the attacks during a crisis for me. Hope we can find a definite solution for this... It really affects our life.

[@215rhino]

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!!!

[@avaahblackwell444]

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]

Same here.

[@mauricehoward6398]

She is not lying I’m literally afraid bc mine just started after being without one for 2 years it’s so bad I ask God to just let me die.. it always happens when you’re relaxed or asleep. The worse pain I ever endured in my life

[@dameonleary9531]

No one understands the pain.

[@pobrez7649]

kzbin.info/www/bejne/b560hIJqid-Vrc0

[@dushawn86ify]

I understand

[@myheartwillstopinjoy8142]

I really don't. I had pain in my life, but surely nothing close to cluster headache. But I support you and I wish you the best.

[@JrellNY]

honestly. and that makes it even worse

[@teachandfunnstuff3127]

I never had a cluster headache but dear that sounds scary

[@syedairsa2368]

You will probably not notice my comment but your video made me feel I am not alone…

[@FootySquaddd]

Gone days without sleeping my pain lasts 10mins minimum and almost 7hours maximum...to everyone that’s going thru this stay strong we in this together🤞

[@Studer75]

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.

[@josecontreras5359]

I feel dissenting almost 5 years I don’t know what to do anymore I hope one day is going away

[@jeffoquinn852]

Hi im jeff and i do know your pain. Everything you have said is so true. No one will understand unless thay suffer like us, u cannot explain pain. The only help i could find is sumatriptan injections. I also have a H oxygen tank. A very large tank that welders use. 15 liters a min. I'll pray that someone finds a cure for us all.

[@코끝찡-h4s]

I have a cluster headache for 8 years too 😭😭 Cheer up together🙋‍♂️

[@JackieHollywood]

wow im so sorry... :(

[@sylvomordor9338]

Lol me too we is fighters 💪💪

[@mahanassar2580]

Blood patches are working on all types of headaches. Look into "Leak Week" Any old injuries could trigger them etc. Please just do the research. Thanks

[@pobrez7649]

@@JackieHollywood kzbin.info/www/bejne/b560hIJqid-Vrc0

[@MOONSLIFE36]

Just in the middle of an ongoing flair clusters. I had brain surgery and have metal in my skull and brain 🧠 made it so much worse

[@shakirwatson9764]

I feel your pain I get them to and it hurts like hell, i try to do things to help me take my mind off it but I had days where I wanted to take a gun and just blow my head off but I do things to help me to take my mind off it

[@pedrowebgecko]

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....

[@ligayamo9953]

I feel you im new suffering for this cluster headache i can't sleep 😭😭😭😭😭

[@kolliwanne964]

In German we have the medical term "Vernichtungsschmerz", basically translating to "Destroying pain" that is used for conditions like clusters that basically whipe out everything but the pain.

[@jzzzavgh1138]

Dumb ass comment