I have them too and just got out of cycle 3 days ago. I call them Facial Nerve Attacks (FNAs). A few things I learned from this last cycle: 1. I overdid it on sumatriptan injections and had awful rebound headaches, I recommend only 1 shot a day. 2. A high flow regulator (over 15) works better for Oxygen. 3. Emgality has coupon card on their website and I got mine for like 15$ and took it and it seems to be helping. 4. Psychedelics only work for me like 40% of the time. I recommend going hiking on them and not being in your room. 5. Count. I count to 4 over and over during my attacks and it helps. sounds simple, but it helps inhibit the pain from hijacking my inner voice. 6. gell ice packs on rotation help, not regular ice pack as much. 7. Take this awful time and take care of yourself, these will make you stronger, more isolated for sure, but more in tune with your warrior spirit. 8. describing the pain in art helps, paint the pathway. 9. Keep sharing. THANKS FOR YOUR BRAVERY> !
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.
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.
Have you tried microdosing long term? You dont have to actually trip. You take a subperceptual dose, but long term. Some people take it once every three days, others find 4 days in, 3 days off. Ive never known someone with cluster headaches, but i know several with migraines that have found relief through consistent, long term microdosing. Good luck!
This is a 4 year old video, but I know stuff about these are relatively unknown. I've been having them for years but I didn't know what they were until around 2020, I also didn't get ANY relief until maybe 2022 I think. I don't know if it will work for you but for me I saw a neurologist and they prescribed a combination of prednisone and verapamil. The prednisone was for two weeks only and I ween myself off of it so that by the end of two weeks I'm not taking it anymore. They help more immediately with the headaches, but at the same time I'm taking verapamil and that takes about two weeks to kick in. So when the prednisone is done the verapamil takes over. I also get sumatriptan injections for any cluster attacks that do get through though I tend to save them for the most severe of the attacks and ill suffer through the ones I can better "tolerate". I only get them everyday, sometimes twice a day, rarely 3 times a day, for 30 mins to 2 hours to varying degrees of pain. I call minor ones one where I can mostly sit still but I cant really focus on anything, like a 6/7 out of 10 pain, moderate ones I have to lay down and I'm more audible and moving around, like 8 out of 10, then the severe ones I cant sit still at all and I'm begging for the pain to stop and can barely communicate with anyone, those are 9/10 out of 10 pain levels. That's the one I use injections for cause I just can't do it, sometimes the moderate level ones if they last a long enough time. I wouldn't wish this pain on anyone and I truly hope you can find relief. If you haven't tried the prednisone/verapamil treatment, try bringing that up. I hope that helps and if you have tried it I hope you do find something to help.
I’ve had CH since I was 12…. 19 years. Episodic in the fall. I’m sure you’ve taken a lot from these comments over four years, but vitamin D3 has done a lot for me. I take a lot towards the end of summer into the fall. I’m on to two years without a full-on cluster headache. The headaches have become very manageable as I’ve gotten older. A cold 12oz Red Bull, chugged, when I feel the headache coming on has been a huge help.
I also use this headache helmet ice pack that wraps around my whole head. When I apply a regular ice pack to my head, the pain will move to wherever I’m not holding the ice pack. The helmet/hat ice pack prevents the headache from moving, if that makes sense. The pain has a mind of its own it’s really unbelievable.
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 😢
Your best solution is occipital nerve block with corticosteroid + lidocaine (this stops the attacks for a while). Combine it with verapamil 3x120mg per day. Next for attack relief is 100% oxygen at 20l/min flow. Next is sumatriptan nasal spray. Next is gammaCore device for vagus nerve stimulation. It is FDA approved and it decreases the pain level (although it is not removing it entirely). I also have a cluster headaches and these are my "cures"
Sumatriptan, sleeping sitting up and taking slow deep breaths helps me. But I'm lucky as I only have it for 3 or 4 weeks every 4 or 5 years. I'm so people have to suffer with this horrific condition. Stay strong as it can get better as I used to get it every year.
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 RU-vid 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.
Mine are more like a 9, I would imagine it would become a 10 if I stayed laying down, but I know better as a survival response I suppose. And the crying fits after, I get that too. I think it's actually a certain type of bipolar maybe from the insomnia. Cyclothymia. Because I will laugh and joke with the doctor one minute then the next be bawling. Several times in a day. Avoid Sodium Nitrates. Oh im glad you mentioned the shaking, thats a symptom they don't talk about and i was worried.
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 .
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.
Jackie I was up in the middle of the night afraid another cluster was going to start. I started looking for something new to help and stumbled across you. The next day I found something new to me. They think these might be caused by melatonin deregulation. They suggest 2-3g of melatonin 30 min before bed. It has only been two days but I had minor headaches after the first night and none last night.
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!
I feel so bad for u I get cluster headaches to an it feel it is a disability because it completely disables you. I gt what your saying cuz the guy at work don't get they'll say ya I get real bad migraines to I try telling them it's nothing like a migraine. So they think I'm being a pussy. They just don't get it
I actually looked into this this morning, the social security administration added headache disorders, but you have to prove you have them with a doctor and a headache journal.
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
I too suffer. Short of running to ER and getting 150 mg Dem. injection this is the only thing that has helped me. Get into a shower as hot as u can stand it. Point the shower head at the spot like for me it is right side. You want stream to hurt when it hits you. So get as close to the shower head as you can. Stay there until you get some relief. Usually takes about 25 minutes for me… hope this helps you
Go to your doctor or neurologist and ask for oxygen treatment .it is the only treatment will help you. Medications will not help change your diet possibly keto or carnivore. You will reduce you're headaches 95 percent. Stop eating fruits and vegetables which are heavily pesticides. If you do eat them, buy them from Farmers market. I feel everyone that who has cluster headaches. It is unbearable. It is called a suicide headache. Nothing helps. I have changed my diet and with in 3 weeks my headaches went the pain from 1 to 10 on the scale from 10 being suicidal to one. And when it started I'll go away in 20 minutes. Do your own research changing your diet it will significantly reduce your cluster headaches and in many cases cure it. I had it about a month and I understand your frustration and pain. I used to sit down and cry for hours. Four five six attacs daily. Do yourself a favor. Change your diet.
I'm so sorry this happened to you. I also have a cluster headache and it's so frustrating not knowing how long it will take this time. I started having them in 2012, but I might have had them for longer as I have had extreme headache since 2005 and the doctor I had at the time didn't believe me and just told me to lose some weight and that it was tension headache and then I was diagnosed with atypical migraine until I saw this tv show that is a quiz like show with a team of three medical doctors competing with a team of regular people that just Google the symptoms and they have real patients that have been diagnosed with a disease and they compete to find the right diagnose. In this episode there was a patient that had paroxysmal hemicrania and it was almost the exact symptoms I had, so I went to my doctor and told him about it and that I thought I had been misdiagnosed by the hospital and he actually agreed with me and sent me to another neurologist in Oslo and he said that he thought it was much likely I had cluster headache as the symptoms is almost the same and I had to try out a medicine that work with Paroxysmal hemicrania but not cluster headache to find out which one I actually have and I was diagnosed with cluster headache. I went back to a neurologist in the same hospital and now they believed that I had cluster headache but they tested it once again with the same medicine to make sure it was right. A while after that I got medical oxygen, but it was during the pandemic and no one told me how to use the oxygen and I had it for like three years without using it and I delivered it back as I had to move and didn't have any room to store the oxygen tank. Now I have got a new medicine this week, but I have not taken them yet as there are some pretty bad common side effects and I'm scared to get even worse, but I will have to try them as I'm going back to the doctor in August. My doctor told me I had to go to the headache clinic before I had even said anything as I was having an attack during my doctors appointment, and I also asked if I could have an MRI scan and he sent a recommendation so I will get one in a few weeks. He didn't think it was actually necessary, but since I was asking he would send me there anyway just so I could be less scared if there is anything else going on since I have had another type of headache also lately and I don't know what it is. I have had migraine attacks and cluster headache and this third headache at the same time and had to go to the ER to get help there a few times, the last time was in June, so not too long ago. The attack kept coming for over 27 hours with just a few minutes between each attack and I thought I was going crazy and couldn't stand it any longer. They managed to stop the attack after like an hour so it was a relief, even though it lasted for just a few days before the next attack and they have kept coming throughout June and almost every day in July I have had one or more attacks. I had to give up working in 2015 from other illnesses so I have not had to call in sick every day from this headache that people think is just me being overly dramatic since they get headache sometimes but have to go to work with the headache. I have gone to work with this headache and I couldn't do my job right, I was starting to do strange things and couldn't speak properly and the customers started to wonder what was going on and a few days later it got so bad that I was sent to the hospital, this was back in 2012 and I got the right diagnose in 2018. There have been a study at a hospital in Norway but I don't know if they actually finished it as they had to cancel it during the pandemic as the doctor's didn't have time to think of a headache as they had to save lives due to COVID-19. I have never heard of anyone using drugs like LSD or mushrooms, it's illegal in Norway so it might be the reason, but I don't think it would work for long anyways as you will damage the brain from the drug use but I don't think it's strange to try though as you are getting desperate to find something that could help. I think the US has stronger medicine than we can get here so I was hoping that you would get something that can help you as you are still very young and should be out with friends having fun, not suffering from the worst pain in the world. They say that it's more common among men in their 50s but every person I have ever heard about having this is a woman, I have just seen one video on RU-vid with a man. They also say that it's typical for obese men that smokes a lot and drinks a lot of alcohol and eat lots of meat, so I wonder how on earth I could get it being a vegetarian for almost 30 years and not drinking or smoking and being a woman that got this when I was 29, it's a mystery to me. I think we just got bad luck in the headache lottery. I had an MRI scan a few years ago and had an attack when they took it, but as I couldn't lay still they got mad at me, not being nice at all as they had to do it again, they didn't even care that I had an awful pain they just thought I was doing it on purpose. Hope you'll get better soon, take care.
Triggers for my claster headache are, *Too much sun expossure. * stress. * screen expossure. * head and neck possision when sleeping. * to much use of Smart phone * eating dark chocolate * not drinking enough water * drinking alchohol * smocking *sleep late
What does it mean when headsches change sides. It will be on the top right.... then another day on the top.left then another day in th3 back of my head??
Mine hurts, for 5 hours, its starts in the morning like 10am i feel the small pain , and it starts to realy hurt in the 12 in the afternoon and it stops at 4 to 5 pm, I can't move I dont want to speak every thing I do it will hurt, the only why I can rest with it is to sleep and vomit due to pain. And then after I vomit, the pqin will slowly go away,
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.
i just recently got them and i am only 20 . worst pain of my life and i cant really sleep and pain meds dont work got a shot of toradol for severe pain
Sinta-se abraçada, vc explicou exatamente o que eu sinto. Vou tentar os cogumelos, mas soube que antes e depois do uso não pode tomar nenhuma medicação. Espero que me ajude. Fica bem e obrigada por compartilhar! Um abraço direto do Brasil 🫂🇧🇷
It only woke me up once and it felt like my head was going to burst. Now as an adult I get them at night. Every single one happens once or twice a year and always right before I’m about to relax and go to bed. I end up dry heaving from pain standing in the shower and trying not have suicidal thoughts which makes it worse because then I’m crying and my face, neck, eye, brain, etc is pounding like a bat was taken to it every other second and it’s trying to heal but the bat keeping hitting. I feel so guilty because my 2 year old has to watch me experience this and in the moment I couldn’t tell you if she was with me or not. People in my family don’t understand and that stress also makes it worse because they keep asking questions and asking if I need anything and asking if it’s time to take me to the er as if they could help. It’s all so frustrating and I never know when the next one will be.
Mine are also about 3 hours. It doesn’t feel like it but by the time I’m fine I’m like wtf it’s been 3 hours?. BC goodys powder helps a little with reducing it to migraine pain which is manageable.
I never knew about this type of headache until I got it last few days at 39yrs of age, it’s horrible, I’m now on sumatriptan, for how long, i have no idea 😢
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.
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.
I suggest you to give wet cupping a try and do it for a while before leaving it (in case you don't see benefit) I had very severe migraine since childhood. And after suffering from Malaria and typhoid I suffered from a headache that I'd definitely call suicide pain (i had to pass my time counting seconds and 40-47 seconds was always the longest i could endure and break and then having no option I'd start counting again and yes i had suicidal thoughts all the time . I believed i was in hell on earth ) i couldn't speak. i went through this disease for about a month each time it started . On top of the migraine that i had since ever . Nothing worked better than wet cupping on me it keeps me set for a few months now. Then i get another session.
I’m going through a cycle right now, it’s been everyday twice a day for two months now. This is the longest ever cluster I’ve had. I feel absolutely hopeless
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
