Had episodic cluster headache from age 18-39. Back in the 1960s-90s. Doctors at first didn't know what it was. Finally diagnosed, verapamil, ergotamine no help. Prednisone could end the episode. Finally in the 90s oxygen could end an attack in 5 minutes. Doctors told me it would stop by the time I was 40. They were right. I am 72 now and the last episode was 32 years ago. I hear a cure in in development, a monthly shot. No pain like it. Have hope.
32 years later, nothing new. I just started having them at age 67. They give me oxygen. Doctors still don't understand them or care much because they are so rare.
happy for you sir :) stay healthy. I Dont understand why they told you that they will stop at that age ..Do you remember changing sth like your lifestyle or sth that can help? yes emgality seems to work for some of the episodic people..Anyway if you can share any info on how and why do you think yours suddenly stopped i would love to hear it.thank you
I am 64. Every night at 930. I use icecap for relief. These last for about a month and may go away for a year. If these happened to me during the day I would be incompacitated.
I've literally just had an episode and came here to look it up. Honest to god I just wanna use a power drill on the right side of my head to see if it feels better, if that makes any sense.
I hear ya. I try to explain to people that during an attack the thought of jamming a screwdriver into the side of my head actually seems reasonable. They don't get it.
Heard a story of a CH sufferer who did that. It worked and cured his headache. It also cured that pesky heartbeat and breathing addiction he had. And it was his wife that found him on the ground with a drill in the hand and the drill bit in his brain.
I had one typical cluster back in November of 2012, with my first-ever cluster headaches beginning and repeating about every other day throughout the month. The attacks always came at 7:00 p.m., 3:30 p.m. or around 3:00 a.m. (which would wake me up in the most terrible way imaginable). I got a headache while I was at work and one while sitting with my family at Thanksgiving dinner. I had no idea what was happening and I was SO grateful that my eyelid drooped and my right nostril ran during the attacks because otherwise I would have worried people thought I was completely insane given how I ran around and moaned and cried while grabbing my eye for 45 minutes. After that cluster, I waited for them to return. I never had another one, but I had about a half dozen standalone incidents that were less severe over the years that followed. I was seeing a neurologist at the time because I had been having MS-like symptoms of increasing severity. I had lots of neurological testing done, which ruled out any known cause of all my health problems for the time being before the cluster headache arrived in 11/2012. However, some anomalies had been noted, including abnormally brisk knee-jerk reflexes (5+ with clonus) and a blurry right optic nerve head. I went back to the neurologist to report the bizarre phenomenon and he immediately diagnosed it but told me nothing could be done about it. In 2014, I had similar, sudden attacks of vertigo that would set in with the same type of sudden onset, crescendo at the same rate as the cluster headache pain, last 45 minutes, and then similarly fade away and leave me so exhausted I had to sleep for hours afterward. This was diagnosed as Meniere's disease, along with hearing loss and tinnitus, and that was that. I also had one more bizarre phenomenon that presented with the same pattern: the bones in my arms would begin to ache and then suddenly become unbearably painful, as if my bones were being pulverized, and this would last-yep-for 45 minutes and then gradually fade away. No explanation for that. I have been struck all these years by the way all these disparate 'attacks' manifested in exactly the same pattern. In 2015, I was diagnosed with neurological Lyme and Bartonella infections. I was treated for many months with combined oral antibiotics and eventually almost all of my neurological pain, numbness and dysfunction stopped. However, I had other lingering problems that sometimes were extremely limiting. In 2016, I was diagnosed with mast cell activation syndrome. I suspect it may have been triggered by the long-undiagnosed infections doing something bizarre to my immune system, but whatever the cause of the MCAS, I now speculate that it is responsible for all those attacks-the cluster headaches, the vertigo and the bone pain-because the pattern of onset seems to mesh pretty well with the pattern of the onset and eventual resolution of anaphylaxis that I have had in reaction to high outdoor heat, exercise-induced heat, and aspirin and inbuprofen. All of those were factors during the years when I had no idea I had MCAS. I was taking a lot of hot baths because I didn't feel well enough to stand in the shower; I did my best to exercise as often as I could and kept going into anaphylaxis without recognizing it as that (I eventually stopped exercising because I was afraid I'd pass out at the gym.), and I had so much pain during those years that I was taking NSAIDs very frequently and I think these likely triggered anaphylaxis and other symptoms. I've been seeing a great allergist-immunologist for about two years, and his office has me on four antihistamines, an antileukotriene, and monthly injections of an immunomodulating monoclonal antibody, and I have been close to well for most of the past 16 months. If any researchers or clinicians who specialize in cluster headaches happen to read this, I'd humbly suggest that you look into a potential direct or indirect relationship between cluster headaches and mast cell degranulation, including assessing patients' tryptase serum levels, and consider treating them with H1 and H2 blockers for several months to determine whether this affects their cluster headaches. When I learned about cluster headaches, I assumed I would get them seasonally forever, and I'm so grateful that, so far, the only major cluster I ever had was during the month of November in 2012. I pray an effective treatment or cure is developed soon. I can't imagine living with those attacks for the rest of my life.
@@naomideleon8363 I saw over 15 specialists over about five years. Here's a list of what helped among them: Neurologists-The first ruled out ALS and MS and then basically told me all my problems were caused by anxiety. He told me to "take a nice long beach vacation or find a good counselor." (Really.) My second neurologist a year later ran a lot of tests and said that I had some 'worrisome' symptoms and some abnormal lab tests but that none of the tests added up to any specific diagnosis. So in the end he said he could not diagnose a specific illness yet but in time I may turn out to have MS or something. He said all he could do would be to treat my nerve pain, and I passed on that because I did not want to become dependent on opioid painkillers in my 30s. ENT/audiologist: My first diagnosis was Ménière's disease-hearing loss in my left ear and vertigo. Lyme specialist-This doctor was my real breakthrough. She is actually a family doctor but she treats a lot of Lyme disease patients because of where she works and family history; her nephew almost died as a teen from Lyme disease heart block. She was the breakthrough because she diverted from conventional medical practice and ran A LOT of blood tests-I think they took 16 vials of blood from me. Those tests identified Lyme and Bartonella infections and she treated me with three antibiotics concurrently. And I GOT BETTER. I took a long time but she cured all my severe neurological problems. I learned about mast cell activation syndrome while she was treating me and I asked her if I could have it. She was unfamiliar but read up on it and then ordered a blood test for my tryptase level. It was very high and she began to treat me for MCAS with mast cell stabilizers and I improved a bit. Allergist-immunologist: I found one of these specialists in 2020 who was very familiar with MCAS and he confirmed my MCAS diagnosis by also running A LOT of blood tests. He adjusted my treatment and I have been much better again. I have to go to his office every month for Xolair shots and they've improved my life a lot. Many doctors don't believe Lyme disease is real or can persist after short-term treatment, and so it's important to find a doctor who thinks differently than the standard if a patient has persisting Lyme disease. That is what took so long for me initially; I didn't know I had Lyme, and I had it for years and it infected my nervous system. Neurologists tend to treat nervous system symptoms but they tend not to look for infectious diseases as potential underlying causes. They are necessary for diagnosing autoimmune neurodegenerative diseases like MS and ALS but they are generally a waste of time if a patient has an underlying cause like Lyme, syphilis or another infectious disease that can cause neurodegeneration. Most doctors don't know anything at all about mast cell activation disorders yet. These disorders are relatively new to medical science, having been described only around 2016, and discoveries are still being made about how they function and how to treat them. So at this point, it's kind of a big experiment. As a result, there is also no one medical specialty that treats mast cell activation disorders. People who have mastocytosis tend to be treated by oncologists (cancer) because mastocytosis can evolve into blood cancer. Some hematologists (blood) also treat mastocytosis patients for this reason. Because they treat mastocytosis patients and the symptoms are the same for mast cell activation syndrome, even though the pathology is different, some (not many) hematologists and oncologists who treat mastocytosis patients also will treat mast cell activation syndrome. Mast cell activation syndrome is an immunological disorder and so some immunologists can diagnose and treat it but because it's still relatively new, it's not well known and many immunologists are not even aware of it and so they couldn't diagnose it. Some allergists treat it but usually they only treat the allergic symptoms of it rather than managing the underlying disease process. My allergist-immunologist understands it well but I think he is somewhat unusual in that regard, probably because he is on the board of various medical associations and he tends to stay on top of emerging science. Depending where a person lives, it may be very difficult to find a doctor who is competent with mast cell activation disorders because they are both "newly discovered" and diagnostic and treatment protocols are not well established and are still being figured out. Unfortunately, medical doctors have to know about hundreds of common and obscure illnesses and they can't know it all, and many get overwhelmed and are not motivated to stay on top of developing science.
this is brilliant, I've been suffering from these for years and I've not known what it was. I was describing the symptoms to myself as you were saying them. Thankyou so much
I've had cluster headaches for about 40 years and at times it's been sheer hell. That said, a couple of years ago I was given a greater occipital nerve block (often referred to as a GON block or just a nerve block). What a life saver! I've not had any cluster headaches since. A GON block is an injection of local anaesthetic and steroid around the greater occipital nerve (GON), at the back of the head and top of the neck, designed to reduce the inflammation of tissue and relieve headache. It's literally changed my life as I was in a very bad way.
Glad I read all these comments. I'm 70 and have had it for five years, usually in September. After initial struggles I found relief from Prednisolone starting with 40mg and tapering off till ends.
im in an episode again. Its been 2 weeks. Im so tired of this, I have ptsd from it. Even when it doesnt hurt im paralysed wizh fear. Truly the worst pain you can imagine, makes you wanna leave this planet..
I'm so sorry. I know how painful this is and how traumatizing it is. I think we all are here because we wanted to find answers for ourselves or loved ones because it is unbearable. I learned of a term that some people use when referring to them which is "suicide headaches" because according to them people who suffer from CH have an increased rate of suicide due to just how bad it is. I wish there were answers or that knowing more people feel this actually would help in the long run. Right now we don't have that, and unfortunately the most fortunate part of this which is that it isn't physically harmful or dangerous makes it something that a lot less money and resources go into researching CH. But there are people trying to do something about it. It might not happen as quickly as it would if CH were immediately potentially terminal, but it will come. Just like you do every time you get one, keep persevering because you are valuable to us and to the world in ways that you won't and can't know, and one day you will be able to cry those same tears of relief that we have been holding onto for so many years for the day that we will be free of these. I want to see "luc2dvision" commenting on the video or post or article that announces a curative treatment for CH. Stay strong, and I hope that since the time of this post your cluster has subsided and you have gone into remission for now.
@@csantos2 thank you so much for your reply and kind words. Since the comment i am blissfully pain free, all thanks to psylocybin so i guess i found the only thing that helps.. busted right out of my cycle, could not express how thankful i was to sleep the whole night and wake up without pain❤
Episodic time. It's been a month now. The relief I have right is knowing I'm not the only one going through this because for years I've been trying to explain this and mostly get the maybe it's a tumor tal. I'm tired of sounding like Arnold from kindergarten cop! Also doctors with the sinus infection talk. Thank you for giving me more knowledge on this. Wishing everyone pain-free days!
He has never had one…. He is right on. It is like the pain associated with a brain freeze but instead of being inbetween the eyes, the brain freeze pain is in the upper cheek area to around the eye to the temple zone.
As a person diagnosed with cluster headaches this is pretty accurate as far as time being 2am. But now going on 6 years they seem to be consistent around 5pm until the am. I have oxygen therapy it sometimes works. They prescribed toprimate and gabapentin. Neither worked but I felt worse being tired, groggy, unbalanced. I've had periods where I'm free of clusters for almost a year. That feels amazing and you think you're done... You're not.... I wish there was more answers that are realistic. I can't take steroids or any of the other medicines due to a aortic dissection 6 years ago.
I've had clusters for the last 9 -10 years. ( chronic) My neurologist and I have tried virtually every preventive medication thats available. They work fine for a short time then quit. Once we get to max. Dosage we have to switch to something else. I average 2 to 5 a day starting around 10 pm. On a pain scale of one to 10, about 60% of the time they are a 9 to 10. The other 40% they are off the charts ( a 12 to 15) and have even caused symptoms of going into shock. The only thing that stops the pain is the sumatriptan injection, but you can't take it with every headache because of safety reasons plus insurance will only allow 9 doses a month. Ive already lost two jobs because of these headaches because i get no sleep at night and working nights when you get a ch is impossible. No one seems to understand how bad these are. Mine go all the way down my neck. So its like having a white hot poker stabing in my left eye, while having a major sinus infection while a dentist is drilling in my upper and lower jaw without novacain. If I were able to get a gun in my hand while having a 15, I hate to say it, but I think i would probably use it. I pray your research can come up with some answers because I can't go through the rest of my life like this.
I’m SO unbelievably sorry to hear this 💝 just know, you’re not alone. I too have cluster headaches, I’m in a cycle right now and just got done with one, it was from 4pm until about now still because I still feel residual cramping on the left side of my eye and head. These headaches are a leading cause of sui**de. Mine, just like yours, start at the very corner of my eye and branch out across the entire affected side of my head and it makes its way down into my neck. I have an oxygen tank which doesn’t help, I have Maxalt which can help, and Verapamil which helps out whenever it wants to- it did not help me this afternoon. I vomited quite a bit from the pain and I use an ice cold washcloth either directly on the affected eye or across both of my eyes and a heating pad on the highest setting for my neck. The thing about these though is that there’s no relief. I’ve got peppermint tea to drink and I’m snacking on saltine crackers trying to see if I can keep something down. Did you know cluster headaches only affect 1 out of every 1,000 people! Thank goodness they’re rare! My mom had them though and when we were kids she would pound her head against the walls while crying because of the intense amount of pain, I’ll never forget it. My doctor’s nurse once told me her school textbook likens cluster headaches to “bone crushing pain.” I replied, “well, you’re with someone who has a diagnosis of them, ask away if you have any questions!” I really hope you’re doing well. Please know, you’re not alone. Cluster headache sufferers are out there and we know exactly what you’re going through. We MUST continue to conquer them!!!
Why you haven't tried cupping ( Hijama ) . You need to put 8 cups all around your head and the gas under the skin causing pain will be out. Once a month . I am sure the first time you will be cured . I regret not doing this 25 years ago . My life would have been different. Go do it and stop listening to doctors . Medical science is a scam and doctors are the worst scammers. Even you can see now what they are doing with the hoax pandemic . Sell more medications and masks . We should go back to tradition . Take out these gases under your skin . I should've not taken their triptans and ergotamines . It's. Scam . It's not a cure . And they will never offer the cure .
@@underoath115 This is an extremely dangerous post. Anyone who reads this statement about medical science being a scam please do your due diligence. Do your own research. Look for peer reviewed articles about treatments. Look into the "science" behind cupping. If you doubt in science then you don't know what science is. Science is literally just a method of finding out something that is more likely to be true without letting your bias affect your results. It is about questioning your own hypothesis and trying to break it over and over again until it no longer breaks, and then seeing what you have left. Then you submit that to a ton of other scientists who all want to tear you apart and find how wrong you are and say it in the meanest way possible as if not only were they trying to break your research but also your sense of self-esteem. Then you take in everything they say and if you still have your self-esteem in-tact enough you review your work and retest it or try to fill in the missing holes that were found and see if it still makes sense. Then you go through that process over and over again (known as the iterative process) until it finally qualifies to be published science. All these "the pandemic is a hoax, vaccines are a hoax, medicine is a hoax" people have no idea how any of this works. Seriously, 2.24 million people died from the rona and they still scream "hoax." Something is seriously wrong with them, and they are definitely not qualified to be making statements about medicine and science unless those statements are to say that they know nothing about that. Everything in medical science comes from what we have observed happening naturally and we isolate it to find out how and why it works so we can use these things globally in treatments. Aspirin? We observed the indigenous people of the Amazon drinking tea made with this bark any time they were in pain and saw that it helped them. So we isolated the compound found in the tree bark that actually did that and we started manufacturing it so the rest of the world could receive the help that these tribes were receiving simply from their local environment and called it aspirin. That's medicine. That's what is behind all of this. And the scientists make nothing. They do it solely to help people out because that's the reward that takes place of money. The only real money to be made is in the corporate world of medicine and science. So please, do not listen to people like this person (who literally calls himself evil already) and talk to doctors and use Google Scholar to do your research instead of regular Google where any idiot with a keyboard can make a post about something and pretend to have any idea of what they are talking about. Challenge yourself always and always seek the help of experts in their fields. You wouldn't have a massage therapist design and build the fuel injection system in the car that you use to take your children to school. You'd have it designed by expert engineers in combustion and thermodynamics and fluid dynamics and mechanics, and built by expert machinists and assembly workers. You'd do that because you want to be able to trust that your kid will make it to school alive without your vehicle exploding. So don't take your medical advice from someone who is not an expert in their field. The only advice laypeople are qualified to give on fields that aren't their expertise is that you should do quality research on something and talk to experts in these fields.
Caffeine is a cluster heads friend. Ty for the vid. 7 years episodic now. May try emgality next but only covered for migraines in Canada, not cluster yet.
lincoln9200 what I do is black coffee, 5hr energy drink, hot shower in the dark with my eyes open (pains on the left for me), then bread and marg. I’ve got a steam inhaler called MyPurMist that helps as I don’t have oxygen here. That helps lower the duration but so does my mix. Meds are questionable at best. Sumatriptan shots are bad for me. You’re not alone stay strong. They end.
@@lincoln9200 www.amazon.com/Red-Bull-Energy-Drink-Sugarfree/dp/B006MB7M6G/ref=sr_1_1?dchild=1&keywords=redbull+12oz+sugarr+free&qid=1596517967&sr=8-1-spell - keep one on you at all times, completely serious.
Loud noises, bright light, talking, all trigger my cluster flare-ups. I have been in remission for hear and a half, but just last week, they are back. Pain on the right only. Have to sleep sitting up, use meditation to make it thru an episode. Thanks for the info
I’ve just had pain on the left side of my eye intermittently all weekend. Just a sharp pain. All weekend. Came and went, came and went. Some times no pain, other times a 10. I didn’t want to pace; I just wanted to be in one spot. I did find it easy to fall asleep if I wanted to, but the pain was excruciating. No watery eyes, no runny nose. Went to a walk in and was told it was likely a migraine. Which makes sense after watching this because there really no restless. I just wanted to be still. The doctor gave me a pill and I’ve taken two today and the pain still shows up, but it’s nowhere near as intense. I dont know if what I experienced a cluster or a migraine but I don’t wish either or anyone.
This description is spot on, mine come on at 1:30. It’s awful and hard for family to understand. I sent them this video. I’m in my 4th week of a cycle. Ugh
I believe I have cluster headaches as I was diagnosed by a Nerologist. I’m a person who has been more tired my entire life since a child and as long as I remember. Mine seem to go through different intensity as sometimes it hurts worse than other times and not as bad just more annoying. The intermittent shooting pains lately are only bothering me when I lay down at night as I’m trying to fall asleep. I feel like my over tiredness I’ve felt my entire life has something to do with these. My pain switches though. It’s either on the left side or right side causing a sharp shooting pain or stabbing pain or similar to a lightning bolt coming and going. I’ve also had 40ish-day headaches which were diagnosed as tension headaches and during those types the tension headaches the cluster headaches get way more intense. Anyways who knows. I’m hoping the shooting pains are my brain cells growing back (lol). The pains are seeming to lighten up so I’m hoping this is a phase of life I’m overcoming. What I’ve found to help break my cycles the most is a steroid in an IV or injection. I’m very sensitive to a lot of medications so this makes it so hard to deal with. I want to try oxygen or the device on the nerve but honestly I’m hoping and praying to God this is a phase of life that is going away forever. Sumatriptan oral or in the nose gives me horrible side effects too. I hate medications too so I’m just trying to stay calm and think positive, not let things get to me or get worked up. I’m hoping the less I stress the better I will get past this. These started in 2020 so I can’t help think it’s a covid symptom or the thought that covid and other things just stressed me out too much in life and caused all this to happen. I also avoid coffee because I feel like those trigger these two headaches. Lately excedrin is reliving the pain where it did not use to so like I said, I feel like it’s slowly going away and hopefully my brain is slowly healing or something like nerves are just healing or maybe dying 🤷 . I’ve been on ADHD meds since a young age and a little as an adult and I feel that has contributed to these. There’s so much I just wonder about with these and I don’t even have a definitive answer so I question a lot of things and just keep having hope and peace and try to stay as calm as a cucumber 😜
2007 I was diagnosed with Episodic CH. And the beast is back, absolute torment waking up to 5 five times in the night, starting betweeen 12 and 2am and throughout the day. Sumatriptan injection and Medical Oxygen are my elixers here in the UK, along with Occipital Nerve Blocker injection.
Broken bones, 3rd degree burns, but NOTHING compared to my cluster headaches. As an RN, on a scale of 1 to 10, the scale is ineffective in describing the level of pain. 5lpm O2 does nothing. Zomig works, but find a neurologist to prescribe and diagnose it, good luck. Ice directly to temple, and witch hazel on washcloth allows me to not scream. 7 am and 3:14 am x 2 to 3 weeks twice yearly.
On a scale of 1-10 they are 25! Mine feel like a hot poker sticking through the center of my left eye and out the back of my head and the same poker piercing through the top of my head at the rear sticking down through the back of my neck. The pain increases and intensifies until it's over.
I am 42 years old now I started getting headaches in my early twenties. I would get some pretty severe ones where I was laid up for about 2 days vomiting and completely useless to the world. I wouldn't get them everyday but they were frequent enough to cause me a quality of life issue. It wasn't until I was 37 and I had blood work done where they found I was very sensitive to gluten. And for my entire life I would eat gluten like it was going out of style pizza cookies cereal Bagels bread pasta you name it I ate it didn't care because I didn't know I had a problem. Once I went gluten free I never had a headache again. Until about 2 years went by and I started getting headaches again and they came back with a vengeance. So now I'm taking nertech and using peppermint oil on my head but I tend to wake up with a cluster headache around my left eye every single day the intensity is nowhere near suicidal but it's enough to cause me problems every single day and sometimes they turn into migraines where I'm fried for two days straight and have to call out of work and cancel all plans and usually vomit
I'm exactly the same and 42 also and diganosed in 2007 and back with avengeance currently at the time of this comment. Sumatriptan injection and Medical Oxygen are my elixers here in the UK, along with Occipital Nerve Blocker injection. Tried all the other meds like Varapamill and an antiepelectic drug (Topiramite I think) I can't remembr the name of, but I don't like them.
I'm 35. Was diagnosed with cluster migraines 8 years ago. But suffered with them since I was 6. I've been hospitalized 27 times and had my stomach pumped 8 times because I'd take 10-12 ibuprofen 800's in a day to try and get them to stop. I've gone as far as slamming my head into concrete walls. But 5 years ago finally got prescribed Prednisone 5mg (steroid) and it work amazing. But I'm now on a 30mg Prednisone only when I get them. I first got them on my left side. But about 10 years old they went to the right side and have stayed on that side. I get hot. Dizzy. Face swells. Loss of vision. Bloodshot watery eye. My headaches star randomly. Never the same time. And within 5 mins my are at full power and last hours. Hot makes it worse. Cold,light,dark all make them worse.I've had up to 5 a day. For weeks. Then boom nothing for a year. Summer winter fall spring. They come when they want. And their is no other medicine that even touches mine. Prednisone pill. is the only thing that works.
I'm so sorry you have had to go through this. 😢 I just added a long comment above that explains why I am asking, but have you tried taking antihistamines as a potential preventive measure? I have NO idea if it would work, but at least in my case, I was diagnosed with a mast cell activation disorder years after I had cluster headaches, and I suspect that the clusters were caused by anaphylaxis/allergic responses. I am terribly allergic to aspirin and ibuprofen now, which I was not when I was young, and they cause anaphylaxis, especially gastro distress. If you have tried everything else, consider discontinuing using aspirin and ibuprofen temporarily and taking only acetaminophen (not super high doses, obviously, as it is hard on your liver) for pain, and taking relatively high doses of multiple antihistamines daily. If there's any chance your clusters might be related to mast cell activation, then taking H1 blockers (Allegra, Claritin, Xyzal) in combination with an H2 blocker (famotidine) could possibly improve them. It's pure speculation on my part, but in my case, the cluster headaches seem to have been related to episodes I had of anaphylaxis for years before I knew I had a mast cell activation disorder. It may be worth trying if you have tried everything else. Good luck. I hope you get a reprieve soon.
Prednisone works so well to give me a brief remission from an unremitting Cluster. Isn't there something less toxic that would have the same effect on the body and could be taken more regularly?
As soon as I have onset, I take 60mg of Prednisone. If no relief within an hour, I take another 30mg. This is the only remedy I’ve found that works for me.
Started clusters in my 40s. I’m now almost 78. I go for years without clusters and then, like right now, I get a three to six week episode. But over years it’s changed. Originally I got the headache about one in the morning. It would wake me up night after night. I used sumatriptan injections for fastest relief. But they really physically drain me. Now I just tolerate the pain a few minutes longer and use the inhalers. Darned expensive even with insurance. I’ve found one alternative free treatment can help if I catch the headache when it’s just coming on. Feet in the bathtub in hottest water I can stand, with an ice pack wrapped around my neck. Wrapped around back and sides of neck.. 90% of the time the headache pain goes away and I almost immediately have the final drooping, tearing eye, and running nose. Don’t knock it, it works for me. But only if I catch the headache before the full blown pain starts. It’s less effective at that point. Oh, I’m now in a more scattered onset schedule, twice in the day time and once at night.
I have this headache for 25 years, and repeat every years. Somethime left sometimes right, my right side more painfull, worst feels like wanna suicide. Thank you for sharing.
I'm sorry I've had them for about 20 years as well I'm 43 I wasn't diagnosed with this until I was about 40 I used to just deal with the pain .by the time I really get to the doctor the episodes will be over and then it wouldn't come back until next year 6'7 I weigh 250 lb and I literally holler out in agony pain crying.... no one understands this pain it hurts so bad I want to take my life sometime
Hello Doctor. Thanks for your education. My daughter is 3 months pregnant and is suffering terribly from migraines. Could you recommend something that won’t hurt the baby. Thank you.
Year 25 dealing with this. Forever diagnosed with chronic sinusitis. 10 years, and thousands of antibiotics and steriods later, I still hadn't found any relief. Finally, a doctor promised he could get rid of my pain by doing septoplasty surgery. Got that done years ago. However, the pain has jumped to the other side with a vengeance. No wonder they are called "suicide headaches" cause i cant imagine living out another 20-30 years having to deal with this violent, debilitating pain!
I really wish I had known when this aired. I have both cluster and migraines. A cluster headache ALWAYS leads to a migraine. I can get a migraine without getting a cluster. The cluster headaches suddenly started in the summer of 2013 - awakened by the worst pain in my life, felt like a spike being driving into my left temple. It is almost always (>90%) on my left eye, and that same eyelid droops. Currently with my 2nd neurologist (really like him) and trying Ajovy - it has decreased the severity of migraines, but not the frequency of either migraine or cluster (still get up around 2am 15-20 nights/months). Usually, 50mg sumatriptan (oral) with a "Goodys" will work, but leaves me exhausted the next day. When this COVID dies down, would love to talk with you. Will definitely discuss with my neurologist!
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
I find that I’m just literally utterly exhausted after a CH. I also have migraines. The med is the same Imatrex but I am not completely mind and body fatigued after a migraine, even though used Imatrex. ( I use 25mg oral for a migraine ) ( 6mg subcutaneous injection for a CH ) I think it is the actual CH that makes you exhausted rather then a side effect of a med. I know some meds can make you drowsy, but if you’re talking just ran a marathon can’t move don’t want to think exhausted. It may be a symptom of your CH. I have experience with a close family member who has Grand mal seizures and gets the same way. Just utterly fatigued. They have seen me after a CH and recognized it as the same fatigued. If I can push through it ( you should really rest but kids life ect) 15 mins or so I can feel my energy coming back. I don’t drink any caffeine but I heard that it can help with the CH itself and the fatigue felt after. Especially if you’re having your episodes 3-6 times a day and close together like mine. I know someone who uses Red Bull to help theirs but I would suggest a more healthy alternative like a strong cup of coffee or black tea, even a coke. Good luck ☺️
Im 15 and have had clusters since I was 10. Truly the worst pain. Currently on monthly emgaility and sumatriptan injections for a attack then high flow oxygen. So fun LOL
Good day Dr.! Your information was satisfactory. I'm a cluster headache sufferer for more than 11yrs. When in an attack i usually cry like a baby. Not only for the intense pain, but knowing that im completely helpless and it affects the ppl i care abt around me and that scare me the most bcuz they just have 2 watch me helpless and cant do anything even though they try 2 help. Some over the counter meds sometimes work and other times it doesn't. But i will try 2 get the oxygen like u mentioned. I thank u for that valid info.
I'd like to share what worked for me. What you are describing is worse than the migraines I get...however, I think this will work for cluster headaches...this may seem too simple and you may think to dismiss it, but because of how it worked for me, I am convinced it can work for you. 3 things: Most likely your body has contaminants like heavy metal, so stop using any non-stick pots and pans and the like (basically, remove the source of contaminants; Do simple detox that includes soaking in baking soda and pink hamalizan salt or sea salt (you will find examples on youtube); And finally, add magnesium to your diet; in supplements yes, however if you really want success, have a raw vegan diet along with a good magnesium supplement ....its easy to say this wouldn't work, but, try it for yourself. Off-course, its like building muscles, its takes persistent consistency, so be encouraged.
Amitryptaline.. don’t think I spelled it right worked for me. Only used it at bedtime. The side effects were hard on me but no CH during that time. I quit taking it and they went away until this week. Hoping this is a fluke because they were not over the top painful just painful.. big hugs to you all. This is a hard road🙏🏼💙
The HAs come in clusters for 6 or more wks, and seem to correlate with seasonal changes where there are a lot of storms and very sudden changes in air pressure.
I've heard cluster means they go away but mine ne er completely do. They come in two parts the first is a mild headache and the more severe is the cluster that comes several times a day. However, I wake up with a basic headache when I awake and when I go to bed. It's not the worst pain I've ever had by far.
Im in the worst "Cluster period" I ever had? My girlfriend called after ambulance on 2 occasions last week. Im totally exhausted and dead scared for the next episode? Im wondering about Morphine or Opioid treatment? Furthermore, I wonder what help I can expect from a dentist? Im desperate for any relief!
Have had severe severe pain in div 2 trigeminal nerve after ENSS sinus surgery in 2020. Seen dr graff Radford and MANY other specialists for neurology- 25 other specialists said nothing found. 25 years later- debilitating pain continues.. help?
I have suffered from CHs for 30 plus years. Was correctly diagnosed in 1997 and discovered Imigran Nasal spray in 2008. This treatment not only stopped the headache within minutes but also shortened the cycle pretty much immediately. I have been in remisiom for approx 5 years until 3 weeks ago when the CHs started again. I have been using imigran nasal spray and am usually getting 2 headaches a day but they have persisted longer than usual. Im on week 3 now. I am going to see my GP to suggest some other form of treatment. Thanks for this video. Very informative.
I've had them for 35 yrs. As I get older I get a 5 yr break. Used to be 8 months out of yr. Tried everything short lived. I hold ice on face to get rid of it go back to bed repeat. They last about 6 to 8 wks. My endocrinologist said my hestimime and cortisol normal while I have clusters. I now have ulcers from pain all these yrs perm droopy eye high BP and heart issues. Long term effects are serious because of sleep deprivation . From trying all pills I also have cysts on liver. My Dad had them and died at 54 while having cluster. He had a stroke then heart attack. He used to pass out from the pain.
Good day Doc..recently had an attack of cluster headache...it comes on every two 2 years.Yes.very painful.it stays with me for about 5 to 6 weeks.Been having these headaches 2016..2018 2020 and 2022...HOW CAN U HELP GOING FORWARD TO OCTOBER 2024
I've been haveing them for alil over 6 years currently coming off a cycle of headaches now they were light not as extreme as the last cluster cycle that hit,my right eye would swell ,water,my nose would run,and my head would go threw excruciating pain, a very hot rag n dark room seems to knock it out in 10 to 15 min for me with the hot towel on my face were pain is...
I've been having these cluster headaches for about 6 years. The left side of my head aches and feels is if someone is stabbing me behind my left 👁. My eye begins to water and then my left nostril is filled with mucus. My episodes start at the same time at like 10 am. It will last 4 to 5 hours then not re appear until 10am the next morning. I've thrown up because of this pain as well 😪 😞 😔 😩 😫 🙃. It really does suck anticipating it too.
I am having a cluster period right now,i usually use varapamil but i don't remember my usual dose can you give me some in sight on what measure to take?
Hi Dr. Mark Thank you very much for the video. Since you are doing researches on cluster Headaches ..Just wanted to inform that I have these Since I was 11 yo..and as I remember when I was a child..I used to get it on the left side for so many years and then changed to the right side....I even in one of the attacks had it on the right side and few days later shifted to the left side. I don't really know...maybe mine is different..or the devil inside my head has been changed 😬
My first ever episode was on the right side of my head in september 2004. Every episode since (usually 1 a year, some times 2 a year sometimes a year or 2 year gap) have always been on my left side since then.
I have HBP, and lately I have started to having headaches above my eyes which is something I almost never have, not both eyes simultaneously, from the pain threshold that you are describing, I haven't experienced that type of pain.
In my case it feels like my brain is trying to explode out of my right temple. My doctor gave me a prescription of sumatriptan sub injection pens, that really does it for me. I press it against my thigh, push the button and the pain slowly goes away in about 5-6 minutes
I'm 47, i've been having migraines everytime I had my period since I gave birth 17 yrs ago... But just lately I've been experiencing one sided headaches which was so severe..it even wakes me from sleep. I thought it was just migraine just in different form. and I suffered from dizziness too everytime I have them. Just last week, I felt like the right side of my skull was being pierced with a knife...my right eye was so so painful i had tears coming out of it.... Yesterday I woke up dizzy so i just stayed in bed, as everytime I moved I wanted to throw up... then at about 9pm, those piercing pain on the right side began, then my right eye started to hurt, even my right cheek and temple were throbbing... I wanted to cry from the intense pain but i knew it wouldnt help... it lasted maybe 2 hours or more...
I'm confused...i get headaches that are over 12 hrs, pain left side of head, left side of neck & spine.. i have to lay down all day.. teary left eye and runny left nostril..i get warning signs like sensitivity to light & noise.. and a chest feeling like fever with arrhythimia.. my tiger is mostly mental
This morning my headache included a minor nose bleed on my left nostril which is the side I always have the eye pain. I have been seeing a chiropractor which I thought was helping but…..it’s back.
I have cluster headache and wouldn't wish it upon my worst enemy. Snorting a large amount of ketamine is the only thing that I have tried that works for me, relieving symptoms massively in about 10 minutes. My doctor is recommending me oxygen therapy, but I haven't tried that yet. Luckily I only get it a few weeks a year and only one attack a day.
I suffered for 20 years...god offal..went to DrSaphers clibic in AnnArbor..mich people around the world went to his clinic..when I went through menopause the headaches stopped.. 20 years of horrific pain..I feel for all who suffer from this...
I have been diagnosed for only a couple of years now. I am pretty sure I had them before then and thought they were just an isolated migraines. It's only my right side. I get blurry vision and even lose vision in my right eye. When I am not having a full blown cluster, I feel like I always have one trying to come on. Almost like a car that you try to crank and just doesn't turn over. Am I crazy?
Not crazy. I say I can feel it lurking right behind my eye, waiting to spring up. I’m generally aware it’s there. Seems like as soon as I forget about it, it reminds me quite painfully, it ain’t going away.
everyone here is so old im 16 and have extreme episodes where i just cry bc it hurts sm : ( i want to take magic mushrooms but i dont think im allowed to
I started with migraine headaches went to see some people and they told me that it was in my head and it was psychological I was wanting to have a routine migraine daily involving a lot of vomiting and it was a ritualistic thing that I just had to do this went on for years finally I had went to someone that said that I needed oxygen therapy Raya drugs I can only use so many of them because of side effects to get rid of the headache and they diagnosed me with cluster headache that was a result of ignoring me about migraines how often does that show in your study
These cluster headaches are awful just awful! I’m wondering.., I didn’t start getting these cluster headaches until I had an accident at work. It resulted in having a spinal fusion. Ever since I’ve been getting these like clock work. Anyone ever had this kind of experience?
U can help me.🌷im Ella and I have constant 6/10 annoying nagging dull ache everyday for 3 yrs above my left eye followed my tingling to the side of my mother and checks idk if it a headache its constant.
That's so sad sweetie, I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
@@unapologeticella4540 kindly send me your whatsap number and email address so I can help forward it to the doctor okay. he can also help cure yours permanently once and for all ♥️♥️
I'm 27 years old I started getting cluster headaches just over a year ago.. I'm using 40mg of imigran also frovatriptan... Reduces it but does not get rid I get it in my right side of my head... I get ear weirdness too like full ear... But to me this is not a headache it's more like a ball if fire in my head... Verrry uncomfortable
For me, Ear pain is usually a sign that the attack is coming to an end but yours sounds pretty bad. -You might have Migraines as well as CH, but it could also be your CH's are so severe because of other reasons such as seasonality, sleep patterns, diet etc etc....some people avoid certain foods they know to be a trigger, temperature can also be an issue for people....It's worth looking at what you were doing and what you consume in the hours/days before an attack
I've had a headache almost eveyday for the past 8 months. All i get is painkillers, they don't touch my headache. I don't think my GP's understand how much pain i am in. I'll move upwards & almost faint. I'll turn just a little instent pain!. My pain is normally around mt left eye on my eyebrown. I had a stuffy nose on my left nostrol. I'll also get a sharp headache on the back of my head & this all started just when i turned 19-20 i'm now 21 & it's getting worse. I've not really had any brake of my headaches. It's making me quite upset & angry being in pain all the time. My vision isn't effected at all but my mood can easily change. These headaches will also last around a few days then will ease for a few hours and restart. What type of headache do you think i have?
There are a number of possibilities, and you really need to see a neurologist for a diagnosis. By the sound of it, the medical professionals you have seen haven't been trained to deal with headaches of this nature, which is still common even in the richest countries. I know that's easier said than done, but you really need to do so. All the very best.
Great information , very true describing the pain. I have this evil headach 15 years ago but it os undiagnosed and i was always treated as migraine patient and most the time i just suffer and wish to kill my self because the migraine and the pain killer therapy doesn’t work . I was diagnosed only 3 month ago . I didn’t try oxygen yet.
That's so sad sweetie, I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
I'm 35 and suffer with clusters. I wouldn't wish it on my worst enemy. My headache hits at 1:30 am every morning and is gone by 4. But it's not every night. It'll happen for about a week and then I may got a month without one. But they are hell
I suffer from these every other year. Always an odd numbered year too so they may get me again in 2021. Sumatriptan works for me. AMAZING. The injections from an epipen-like device. Gone within a minute or two, They are the worst !!!
My doctor prescribed me the oral version which stops the pain but makes me feel like crap, everywhere I’m reading all take the injection instead of the oral, why???
@@camstat4067 The injections are expensive.. They are about $100 per dose so a lot of insurance companies wont approve the injections because the pill version is cheaper. It sucks I know !!
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
Hi sir, I m from India. One doctor said me cluster headache and another said trigeminal nuerologia. How can I know I m suffreing from which disease. I have pain upper the eye. Not on face.
I have both, TN and CH. The treatments for one do not work for the other and vice versa. TN affects more of the face complicating eating, drinking, cold temperatures and touch sensitivity to the affected area of the face/jaw. Cluster pain will always be behind one eye. Best of luck to you, these are tough conditions to manage.
@@dmlonghorn when I eat, brush, shaving and goes on bike without helmet and air touches in left side hair the pain continues. My pain is upper the eye area about 2 inches. Not on face.
I’m 54 male have had cluster headaches for over six years tried everything possible only medication that has work wonders it’s lamotrigine 200 mg four times day.
I be been suffering with migraines and cluster migraines since my first child when I was 15 ,28 yrs ago I had a csection .theyve just gotten worse since my second child 2004 .im not a smoking of any kind I’ve got dentures now so idk y I get them more btw I’m from Redding California
Hi I am Lisa from the Philippines. I don’t know if this cluster or this regular migraine only. But it’s so disturbing almost everyday. I don’t know what to do with this. Is there any food that need to eat to minimize the pain? Or what food should I need to stop eating? Pls help me.
Thank you! Finally somebody states it! Migraine an CH NOT the same
Yessss it is so not the same everytime you try and tell anyone they think they know❤❤❤😢😢😢
Had episodic cluster headache from age 18-39. Back in the 1960s-90s. Doctors at first didn't know what it was. Finally diagnosed, verapamil, ergotamine no help. Prednisone could end the episode. Finally in the 90s oxygen could end an attack in 5 minutes. Doctors told me it would stop by the time I was 40. They were right. I am 72 now and the last episode was 32 years ago. I hear a cure in in development, a monthly shot. No pain like it. Have hope.
32 years later, nothing new. I just started having them at age 67. They give me oxygen. Doctors still don't understand them or care much because they are so rare.
so if I'm 23 now I gotta wait until I turn 40 for it to go away ? damn ..
happy for you sir :) stay healthy. I Dont understand why they told you that they will stop at that age ..Do you remember changing sth like your lifestyle or sth that can help?
yes emgality seems to work for some of the episodic people..Anyway if you can share any info on how and why do you think yours suddenly stopped i would love to hear it.thank you
I am 64. Every night at 930. I use icecap for relief. These last for about a month and may go away for a year. If these happened to me during the day I would be incompacitated.
This is the most informative interview yet.
I've literally just had an episode and came here to look it up. Honest to god I just wanna use a power drill on the right side of my head to see if it feels better, if that makes any sense.
I hear ya. I try to explain to people that during an attack the thought of jamming a screwdriver into the side of my head actually seems reasonable. They don't get it.
Heard a story of a CH sufferer who did that.
It worked and cured his headache.
It also cured that pesky heartbeat and breathing addiction he had.
And it was his wife that found him on the ground with a drill in the hand and the drill bit in his brain.
Me too 😭
Makes complete sense, that's why I'm here today. I've had then for years.
I hear you
I had one typical cluster back in November of 2012, with my first-ever cluster headaches beginning and repeating about every other day throughout the month. The attacks always came at 7:00 p.m., 3:30 p.m. or around 3:00 a.m. (which would wake me up in the most terrible way imaginable). I got a headache while I was at work and one while sitting with my family at Thanksgiving dinner. I had no idea what was happening and I was SO grateful that my eyelid drooped and my right nostril ran during the attacks because otherwise I would have worried people thought I was completely insane given how I ran around and moaned and cried while grabbing my eye for 45 minutes.
After that cluster, I waited for them to return. I never had another one, but I had about a half dozen standalone incidents that were less severe over the years that followed.
I was seeing a neurologist at the time because I had been having MS-like symptoms of increasing severity. I had lots of neurological testing done, which ruled out any known cause of all my health problems for the time being before the cluster headache arrived in 11/2012. However, some anomalies had been noted, including abnormally brisk knee-jerk reflexes (5+ with clonus) and a blurry right optic nerve head. I went back to the neurologist to report the bizarre phenomenon and he immediately diagnosed it but told me nothing could be done about it.
In 2014, I had similar, sudden attacks of vertigo that would set in with the same type of sudden onset, crescendo at the same rate as the cluster headache pain, last 45 minutes, and then similarly fade away and leave me so exhausted I had to sleep for hours afterward. This was diagnosed as Meniere's disease, along with hearing loss and tinnitus, and that was that. I also had one more bizarre phenomenon that presented with the same pattern: the bones in my arms would begin to ache and then suddenly become unbearably painful, as if my bones were being pulverized, and this would last-yep-for 45 minutes and then gradually fade away. No explanation for that.
I have been struck all these years by the way all these disparate 'attacks' manifested in exactly the same pattern.
In 2015, I was diagnosed with neurological Lyme and Bartonella infections. I was treated for many months with combined oral antibiotics and eventually almost all of my neurological pain, numbness and dysfunction stopped. However, I had other lingering problems that sometimes were extremely limiting.
In 2016, I was diagnosed with mast cell activation syndrome. I suspect it may have been triggered by the long-undiagnosed infections doing something bizarre to my immune system, but whatever the cause of the MCAS, I now speculate that it is responsible for all those attacks-the cluster headaches, the vertigo and the bone pain-because the pattern of onset seems to mesh pretty well with the pattern of the onset and eventual resolution of anaphylaxis that I have had in reaction to high outdoor heat, exercise-induced heat, and aspirin and inbuprofen. All of those were factors during the years when I had no idea I had MCAS. I was taking a lot of hot baths because I didn't feel well enough to stand in the shower; I did my best to exercise as often as I could and kept going into anaphylaxis without recognizing it as that (I eventually stopped exercising because I was afraid I'd pass out at the gym.), and I had so much pain during those years that I was taking NSAIDs very frequently and I think these likely triggered anaphylaxis and other symptoms.
I've been seeing a great allergist-immunologist for about two years, and his office has me on four antihistamines, an antileukotriene, and monthly injections of an immunomodulating monoclonal antibody, and I have been close to well for most of the past 16 months.
If any researchers or clinicians who specialize in cluster headaches happen to read this, I'd humbly suggest that you look into a potential direct or indirect relationship between cluster headaches and mast cell degranulation, including assessing patients' tryptase serum levels, and consider treating them with H1 and H2 blockers for several months to determine whether this affects their cluster headaches.
When I learned about cluster headaches, I assumed I would get them seasonally forever, and I'm so grateful that, so far, the only major cluster I ever had was during the month of November in 2012. I pray an effective treatment or cure is developed soon. I can't imagine living with those attacks for the rest of my life.
What kind of specialist so you see for all these diagnosis?
I'm suffering so bad with all you said 😢
@@naomideleon8363 I saw over 15 specialists over about five years. Here's a list of what helped among them:
Neurologists-The first ruled out ALS and MS and then basically told me all my problems were caused by anxiety. He told me to "take a nice long beach vacation or find a good counselor." (Really.) My second neurologist a year later ran a lot of tests and said that I had some 'worrisome' symptoms and some abnormal lab tests but that none of the tests added up to any specific diagnosis. So in the end he said he could not diagnose a specific illness yet but in time I may turn out to have MS or something. He said all he could do would be to treat my nerve pain, and I passed on that because I did not want to become dependent on opioid painkillers in my 30s.
ENT/audiologist: My first diagnosis was Ménière's disease-hearing loss in my left ear and vertigo.
Lyme specialist-This doctor was my real breakthrough. She is actually a family doctor but she treats a lot of Lyme disease patients because of where she works and family history; her nephew almost died as a teen from Lyme disease heart block. She was the breakthrough because she diverted from conventional medical practice and ran A LOT of blood tests-I think they took 16 vials of blood from me. Those tests identified Lyme and Bartonella infections and she treated me with three antibiotics concurrently. And I GOT BETTER. I took a long time but she cured all my severe neurological problems. I learned about mast cell activation syndrome while she was treating me and I asked her if I could have it. She was unfamiliar but read up on it and then ordered a blood test for my tryptase level. It was very high and she began to treat me for MCAS with mast cell stabilizers and I improved a bit.
Allergist-immunologist: I found one of these specialists in 2020 who was very familiar with MCAS and he confirmed my MCAS diagnosis by also running A LOT of blood tests. He adjusted my treatment and I have been much better again. I have to go to his office every month for Xolair shots and they've improved my life a lot.
Many doctors don't believe Lyme disease is real or can persist after short-term treatment, and so it's important to find a doctor who thinks differently than the standard if a patient has persisting Lyme disease. That is what took so long for me initially; I didn't know I had Lyme, and I had it for years and it infected my nervous system. Neurologists tend to treat nervous system symptoms but they tend not to look for infectious diseases as potential underlying causes. They are necessary for diagnosing autoimmune neurodegenerative diseases like MS and ALS but they are generally a waste of time if a patient has an underlying cause like Lyme, syphilis or another infectious disease that can cause neurodegeneration.
Most doctors don't know anything at all about mast cell activation disorders yet. These disorders are relatively new to medical science, having been described only around 2016, and discoveries are still being made about how they function and how to treat them. So at this point, it's kind of a big experiment. As a result, there is also no one medical specialty that treats mast cell activation disorders. People who have mastocytosis tend to be treated by oncologists (cancer) because mastocytosis can evolve into blood cancer. Some hematologists (blood) also treat mastocytosis patients for this reason. Because they treat mastocytosis patients and the symptoms are the same for mast cell activation syndrome, even though the pathology is different, some (not many) hematologists and oncologists who treat mastocytosis patients also will treat mast cell activation syndrome. Mast cell activation syndrome is an immunological disorder and so some immunologists can diagnose and treat it but because it's still relatively new, it's not well known and many immunologists are not even aware of it and so they couldn't diagnose it. Some allergists treat it but usually they only treat the allergic symptoms of it rather than managing the underlying disease process. My allergist-immunologist understands it well but I think he is somewhat unusual in that regard, probably because he is on the board of various medical associations and he tends to stay on top of emerging science. Depending where a person lives, it may be very difficult to find a doctor who is competent with mast cell activation disorders because they are both "newly discovered" and diagnostic and treatment protocols are not well established and are still being figured out. Unfortunately, medical doctors have to know about hundreds of common and obscure illnesses and they can't know it all, and many get overwhelmed and are not motivated to stay on top of developing science.
this is brilliant, I've been suffering from these for years and I've not known what it was. I was describing the symptoms to myself as you were saying them. Thankyou so much
I've had cluster headaches for about 40 years and at times it's been sheer hell. That said, a couple of years ago I was given a greater occipital nerve block (often referred to as a GON block or just a nerve block). What a life saver! I've not had any cluster headaches since. A GON block is an injection of local anaesthetic and steroid around the greater occipital nerve (GON), at the back of the head and top of the neck, designed to reduce the inflammation of tissue and relieve headache. It's literally changed my life as I was in a very bad way.
Glad I read all these comments. I'm 70 and have had it for five years, usually in September. After initial struggles I found relief from Prednisolone starting with 40mg and tapering off till ends.
im in an episode again. Its been 2 weeks. Im so tired of this, I have ptsd from it. Even when it doesnt hurt im paralysed wizh fear. Truly the worst pain you can imagine, makes you wanna leave this planet..
Literally in the same boat
I'm so sorry. I know how painful this is and how traumatizing it is. I think we all are here because we wanted to find answers for ourselves or loved ones because it is unbearable. I learned of a term that some people use when referring to them which is "suicide headaches" because according to them people who suffer from CH have an increased rate of suicide due to just how bad it is. I wish there were answers or that knowing more people feel this actually would help in the long run. Right now we don't have that, and unfortunately the most fortunate part of this which is that it isn't physically harmful or dangerous makes it something that a lot less money and resources go into researching CH. But there are people trying to do something about it. It might not happen as quickly as it would if CH were immediately potentially terminal, but it will come. Just like you do every time you get one, keep persevering because you are valuable to us and to the world in ways that you won't and can't know, and one day you will be able to cry those same tears of relief that we have been holding onto for so many years for the day that we will be free of these. I want to see "luc2dvision" commenting on the video or post or article that announces a curative treatment for CH. Stay strong, and I hope that since the time of this post your cluster has subsided and you have gone into remission for now.
@@csantos2 thank you so much for your reply and kind words. Since the comment i am blissfully pain free, all thanks to psylocybin so i guess i found the only thing that helps.. busted right out of my cycle, could not express how thankful i was to sleep the whole night and wake up without pain❤
I’ve been getting them soo long that I’ve adjusted my body to it
Episodic time. It's been a month now. The relief I have right is knowing I'm not the only one going through this because for years I've been trying to explain this and mostly get the maybe it's a tumor tal. I'm tired of sounding like Arnold from kindergarten cop! Also doctors with the sinus infection talk. Thank you for giving me more knowledge on this. Wishing everyone pain-free days!
He has never had one…. He is right on. It is like the pain associated with a brain freeze but instead of being inbetween the eyes, the brain freeze pain is in the upper cheek area to around the eye to the temple zone.
Brain freeze times 10
As a person diagnosed with cluster headaches this is pretty accurate as far as time being 2am. But now going on 6 years they seem to be consistent around 5pm until the am.
I have oxygen therapy it sometimes works. They prescribed toprimate and gabapentin. Neither worked but I felt worse being tired, groggy, unbalanced.
I've had periods where I'm free of clusters for almost a year. That feels amazing and you think you're done... You're not....
I wish there was more answers that are realistic.
I can't take steroids or any of the other medicines due to a aortic dissection 6 years ago.
I've had clusters for the last 9 -10 years. ( chronic) My neurologist and I have tried virtually every preventive medication thats available. They work fine for a short time then quit. Once we get to max. Dosage we have to switch to something else. I average 2 to 5 a day starting around 10 pm. On a pain scale of one to 10, about 60% of the time they are a 9 to 10. The other 40% they are off the charts ( a 12 to 15) and have even caused symptoms of going into shock. The only thing that stops the pain is the sumatriptan injection, but you can't take it with every headache because of safety reasons plus insurance will only allow 9 doses a month. Ive already lost two jobs because of these headaches because i get no sleep at night and working nights when you get a ch is impossible. No one seems to understand how bad these are. Mine go all the way down my neck. So its like having a white hot poker stabing in my left eye, while having a major sinus infection while a dentist is drilling in my upper and lower jaw without novacain. If I were able to get a gun in my hand while having a 15, I hate to say it, but I think i would probably use it. I pray your research can come up with some answers because I can't go through the rest of my life like this.
Have you tried pure oxygen?
@Mary Austin is Go away with your copy & paste snake oil salespitch
@Mary Austin is please help me
Thats intense and made me a bit emotional
I’m SO unbelievably sorry to hear this 💝 just know, you’re not alone. I too have cluster headaches, I’m in a cycle right now and just got done with one, it was from 4pm until about now still because I still feel residual cramping on the left side of my eye and head. These headaches are a leading cause of sui**de. Mine, just like yours, start at the very corner of my eye and branch out across the entire affected side of my head and it makes its way down into my neck. I have an oxygen tank which doesn’t help, I have Maxalt which can help, and Verapamil which helps out whenever it wants to- it did not help me this afternoon. I vomited quite a bit from the pain and I use an ice cold washcloth either directly on the affected eye or across both of my eyes and a heating pad on the highest setting for my neck. The thing about these though is that there’s no relief. I’ve got peppermint tea to drink and I’m snacking on saltine crackers trying to see if I can keep something down. Did you know cluster headaches only affect 1 out of every 1,000 people! Thank goodness they’re rare! My mom had them though and when we were kids she would pound her head against the walls while crying because of the intense amount of pain, I’ll never forget it. My doctor’s nurse once told me her school textbook likens cluster headaches to “bone crushing pain.” I replied, “well, you’re with someone who has a diagnosis of them, ask away if you have any questions!”
I really hope you’re doing well. Please know, you’re not alone. Cluster headache sufferers are out there and we know exactly what you’re going through. We MUST continue to conquer them!!!
Just thank you. For raising awareness.
Any pain other than ch is just a funny trip believe me guys i am suffering from this for almost 30 years 3 days a week
Why you haven't tried cupping ( Hijama ) . You need to put 8 cups all around your head and the gas under the skin causing pain will be out. Once a month . I am sure the first time you will be cured . I regret not doing this 25 years ago . My life would have been different.
Go do it and stop listening to doctors . Medical science is a scam and doctors are the worst scammers. Even you can see now what they are doing with the hoax pandemic . Sell more medications and masks . We should go back to tradition . Take out these gases under your skin . I should've not taken their triptans and ergotamines . It's. Scam . It's not a cure . And they will never offer the cure .
I've been going through cycles for the last fifteen years, and I feel like the word pain doesnt do it justice. It's absolutely incapacitating.
@@aking8477 CH is a real beast and after this long period nothing can stop it from demolitioning our lives
@@underoath115 This is an extremely dangerous post. Anyone who reads this statement about medical science being a scam please do your due diligence. Do your own research. Look for peer reviewed articles about treatments. Look into the "science" behind cupping. If you doubt in science then you don't know what science is. Science is literally just a method of finding out something that is more likely to be true without letting your bias affect your results. It is about questioning your own hypothesis and trying to break it over and over again until it no longer breaks, and then seeing what you have left. Then you submit that to a ton of other scientists who all want to tear you apart and find how wrong you are and say it in the meanest way possible as if not only were they trying to break your research but also your sense of self-esteem. Then you take in everything they say and if you still have your self-esteem in-tact enough you review your work and retest it or try to fill in the missing holes that were found and see if it still makes sense. Then you go through that process over and over again (known as the iterative process) until it finally qualifies to be published science. All these "the pandemic is a hoax, vaccines are a hoax, medicine is a hoax" people have no idea how any of this works. Seriously, 2.24 million people died from the rona and they still scream "hoax." Something is seriously wrong with them, and they are definitely not qualified to be making statements about medicine and science unless those statements are to say that they know nothing about that. Everything in medical science comes from what we have observed happening naturally and we isolate it to find out how and why it works so we can use these things globally in treatments. Aspirin? We observed the indigenous people of the Amazon drinking tea made with this bark any time they were in pain and saw that it helped them. So we isolated the compound found in the tree bark that actually did that and we started manufacturing it so the rest of the world could receive the help that these tribes were receiving simply from their local environment and called it aspirin. That's medicine. That's what is behind all of this. And the scientists make nothing. They do it solely to help people out because that's the reward that takes place of money. The only real money to be made is in the corporate world of medicine and science. So please, do not listen to people like this person (who literally calls himself evil already) and talk to doctors and use Google Scholar to do your research instead of regular Google where any idiot with a keyboard can make a post about something and pretend to have any idea of what they are talking about. Challenge yourself always and always seek the help of experts in their fields. You wouldn't have a massage therapist design and build the fuel injection system in the car that you use to take your children to school. You'd have it designed by expert engineers in combustion and thermodynamics and fluid dynamics and mechanics, and built by expert machinists and assembly workers. You'd do that because you want to be able to trust that your kid will make it to school alive without your vehicle exploding. So don't take your medical advice from someone who is not an expert in their field. The only advice laypeople are qualified to give on fields that aren't their expertise is that you should do quality research on something and talk to experts in these fields.
@@csantos2 o2 20 to 25litre a minute and sumatran sun selfinjectors
had 4 headaches last night. These clusters got me at a breaking point :(
I feel you it's like the worst pain you ever felt in your life I be scared because it hurts so bad sometime I just shake a holler out in pain
from amsterdam have it already for 46 years always at 2 timings afternoon and evenings on the right side
I started to eperience this when I was 9 years old.
Caffeine is a cluster heads friend. Ty for the vid. 7 years episodic now. May try emgality next but only covered for migraines in Canada, not cluster yet.
What do I do to stop it
lincoln9200 what I do is black coffee, 5hr energy drink, hot shower in the dark with my eyes open (pains on the left for me), then bread and marg. I’ve got a steam inhaler called MyPurMist that helps as I don’t have oxygen here. That helps lower the duration but so does my mix. Meds are questionable at best. Sumatriptan shots are bad for me. You’re not alone stay strong. They end.
Do you think canned oxygen would help?
@@lincoln9200 www.amazon.com/Red-Bull-Energy-Drink-Sugarfree/dp/B006MB7M6G/ref=sr_1_1?dchild=1&keywords=redbull+12oz+sugarr+free&qid=1596517967&sr=8-1-spell - keep one on you at all times, completely serious.
@@bm-rf4bc do these drinks stop the episodes?
Loud noises, bright light, talking, all trigger my cluster flare-ups. I have been in remission for hear and a half, but just last week, they are back. Pain on the right only. Have to sleep sitting up, use meditation to make it thru an episode. Thanks for the info
Exactly my episode now . I'm super scared and in pains cos it's my 2nd time and I just found out it's called cluster headache
Thank you for such information! A superpainful headache start affect me since 18 days ago, my doctor disgnoses me with Cluster Headache
Presentation that is clear and coherent. Thank you.
This is a great video I sit in the dark and quiet quite often cuz my headaches are so bad
I’ve just had pain on the left side of my eye intermittently all weekend. Just a sharp pain. All weekend. Came and went, came and went. Some times no pain, other times a 10. I didn’t want to pace; I just wanted to be in one spot. I did find it easy to fall asleep if I wanted to, but the pain was excruciating. No watery eyes, no runny nose. Went to a walk in and was told it was likely a migraine. Which makes sense after watching this because there really no restless. I just wanted to be still. The doctor gave me a pill and I’ve taken two today and the pain still shows up, but it’s nowhere near as intense.
I dont know if what I experienced a cluster or a migraine but I don’t wish either or anyone.
Exactly!,,I'd rather deliver twins everyday then put up with ch, it's so painful, I become so agitated I could pull my own hair out.
This description is spot on, mine come on at 1:30. It’s awful and hard for family to understand. I sent them this video. I’m in my 4th week of a cycle. Ugh
I have both cluster and migraine headaches.
I believe I have cluster headaches as I was diagnosed by a Nerologist. I’m a person who has been more tired my entire life since a child and as long as I remember. Mine seem to go through different intensity as sometimes it hurts worse than other times and not as bad just more annoying. The intermittent shooting pains lately are only bothering me when I lay down at night as I’m trying to fall asleep. I feel like my over tiredness I’ve felt my entire life has something to do with these. My pain switches though. It’s either on the left side or right side causing a sharp shooting pain or stabbing pain or similar to a lightning bolt coming and going. I’ve also had 40ish-day headaches which were diagnosed as tension headaches and during those types the tension headaches the cluster headaches get way more intense. Anyways who knows. I’m hoping the shooting pains are my brain cells growing back (lol). The pains are seeming to lighten up so I’m hoping this is a phase of life I’m overcoming. What I’ve found to help break my cycles the most is a steroid in an IV or injection. I’m very sensitive to a lot of medications so this makes it so hard to deal with. I want to try oxygen or the device on the nerve but honestly I’m hoping and praying to God this is a phase of life that is going away forever. Sumatriptan oral or in the nose gives me horrible side effects too. I hate medications too so I’m just trying to stay calm and think positive, not let things get to me or get worked up. I’m hoping the less I stress the better I will get past this. These started in 2020 so I can’t help think it’s a covid symptom or the thought that covid and other things just stressed me out too much in life and caused all this to happen. I also avoid coffee because I feel like those trigger these two headaches. Lately excedrin is reliving the pain where it did not use to so like I said, I feel like it’s slowly going away and hopefully my brain is slowly healing or something like nerves are just healing or maybe dying 🤷 . I’ve been on ADHD meds since a young age and a little as an adult and I feel that has contributed to these. There’s so much I just wonder about with these and I don’t even have a definitive answer so I question a lot of things and just keep having hope and peace and try to stay as calm as a cucumber 😜
2007 I was diagnosed with Episodic CH. And the beast is back, absolute torment waking up to 5 five times in the night, starting betweeen 12 and 2am and throughout the day. Sumatriptan injection and Medical Oxygen are my elixers here in the UK, along with Occipital Nerve Blocker injection.
Broken bones, 3rd degree burns, but NOTHING compared to my cluster headaches. As an RN, on a scale of 1 to 10, the scale is ineffective in describing the level of pain. 5lpm O2 does nothing. Zomig works, but find a neurologist to prescribe and diagnose it, good luck. Ice directly to temple, and witch hazel on washcloth allows me to not scream. 7 am and 3:14 am x 2 to 3 weeks twice yearly.
I so understand
On a scale of 1-10 they are 25! Mine feel like a hot poker sticking through the center of my left eye and out the back of my head and the same poker piercing through the top of my head at the rear sticking down through the back of my neck. The pain increases and intensifies until it's over.
So helpful and Informative
A very sincere thank you for this video and information. It will help me greatly
I still have trouble defining cluster headaches but identify with activity helping to tolerate the pain.
Uk here 2022 … I’m on sumatriptan injections and oxygen at home first combination of treatment that’s worked for me
I am 42 years old now I started getting headaches in my early twenties. I would get some pretty severe ones where I was laid up for about 2 days vomiting and completely useless to the world. I wouldn't get them everyday but they were frequent enough to cause me a quality of life issue. It wasn't until I was 37 and I had blood work done where they found I was very sensitive to gluten. And for my entire life I would eat gluten like it was going out of style pizza cookies cereal Bagels bread pasta you name it I ate it didn't care because I didn't know I had a problem. Once I went gluten free I never had a headache again. Until about 2 years went by and I started getting headaches again and they came back with a vengeance. So now I'm taking nertech and using peppermint oil on my head but I tend to wake up with a cluster headache around my left eye every single day the intensity is nowhere near suicidal but it's enough to cause me problems every single day and sometimes they turn into migraines where I'm fried for two days straight and have to call out of work and cancel all plans and usually vomit
I'm exactly the same and 42 also and diganosed in 2007 and back with avengeance currently at the time of this comment. Sumatriptan injection and Medical Oxygen are my elixers here in the UK, along with Occipital Nerve Blocker injection. Tried all the other meds like Varapamill and an antiepelectic drug (Topiramite I think) I can't remembr the name of, but I don't like them.
I'm 35. Was diagnosed with cluster migraines 8 years ago. But suffered with them since I was 6. I've been hospitalized 27 times and had my stomach pumped 8 times because I'd take 10-12 ibuprofen 800's in a day to try and get them to stop. I've gone as far as slamming my head into concrete walls. But 5 years ago finally got prescribed Prednisone 5mg (steroid) and it work amazing. But I'm now on a 30mg Prednisone only when I get them. I first got them on my left side. But about 10 years old they went to the right side and have stayed on that side. I get hot. Dizzy. Face swells. Loss of vision. Bloodshot watery eye. My headaches star randomly. Never the same time. And within 5 mins my are at full power and last hours. Hot makes it worse. Cold,light,dark all make them worse.I've had up to 5 a day. For weeks. Then boom nothing for a year. Summer winter fall spring. They come when they want. And their is no other medicine that even touches mine. Prednisone pill. is the only thing that works.
I'm so sorry you have had to go through this. 😢
I just added a long comment above that explains why I am asking, but have you tried taking antihistamines as a potential preventive measure? I have NO idea if it would work, but at least in my case, I was diagnosed with a mast cell activation disorder years after I had cluster headaches, and I suspect that the clusters were caused by anaphylaxis/allergic responses. I am terribly allergic to aspirin and ibuprofen now, which I was not when I was young, and they cause anaphylaxis, especially gastro distress. If you have tried everything else, consider discontinuing using aspirin and ibuprofen temporarily and taking only acetaminophen (not super high doses, obviously, as it is hard on your liver) for pain, and taking relatively high doses of multiple antihistamines daily. If there's any chance your clusters might be related to mast cell activation, then taking H1 blockers (Allegra, Claritin, Xyzal) in combination with an H2 blocker (famotidine) could possibly improve them. It's pure speculation on my part, but in my case, the cluster headaches seem to have been related to episodes I had of anaphylaxis for years before I knew I had a mast cell activation disorder. It may be worth trying if you have tried everything else. Good luck. I hope you get a reprieve soon.
thank you for this…cluster headache is so difficult to manage…
Prednisone works so well to give me a brief remission from an unremitting Cluster. Isn't there something less toxic that would have the same effect on the body and could be taken more regularly?
As soon as I have onset, I take 60mg of Prednisone. If no relief within an hour, I take another 30mg. This is the only remedy I’ve found that works for me.
I been on prednisone for 5yrs not supposed to be it that long but that's only thing works for me
Started clusters in my 40s. I’m now almost 78. I go for years without clusters and then, like right now, I get a three to six week episode. But over years it’s changed. Originally I got the headache about one in the morning. It would wake me up night after night. I used sumatriptan injections for fastest relief. But they really physically drain me. Now I just tolerate the pain a few minutes longer and use the inhalers. Darned expensive even with insurance. I’ve found one alternative free treatment can help if I catch the headache when it’s just coming on. Feet in the bathtub in hottest water I can stand, with an ice pack wrapped around my neck. Wrapped around back and sides of neck.. 90% of the time the headache pain goes away and I almost immediately have the final drooping, tearing eye, and running nose. Don’t knock it, it works for me. But only if I catch the headache before the full blown pain starts. It’s less effective at that point. Oh, I’m now in a more scattered onset schedule, twice in the day time and once at night.
I have this headache for 25 years, and repeat every years. Somethime left sometimes right, my right side more painfull, worst feels like wanna suicide. Thank you for sharing.
I'm sorry I've had them for about 20 years as well I'm 43 I wasn't diagnosed with this until I was about 40 I used to just deal with the pain .by the time I really get to the doctor the episodes will be over and then it wouldn't come back until next year 6'7 I weigh 250 lb and I literally holler out in agony pain crying.... no one understands this pain it hurts so bad I want to take my life sometime
Hello Doctor. Thanks for your education. My daughter is 3 months pregnant and is suffering terribly from migraines. Could you recommend something that won’t hurt the baby. Thank you.
Year 25 dealing with this. Forever diagnosed with chronic sinusitis. 10 years, and thousands of antibiotics and steriods later, I still hadn't found any relief. Finally, a doctor promised he could get rid of my pain by doing septoplasty surgery. Got that done years ago. However, the pain has jumped to the other side with a vengeance. No wonder they are called "suicide headaches" cause i cant imagine living out another 20-30 years having to deal with this violent, debilitating pain!
I really wish I had known when this aired. I have both cluster and migraines. A cluster headache ALWAYS leads to a migraine. I can get a migraine without getting a cluster. The cluster headaches suddenly started in the summer of 2013 - awakened by the worst pain in my life, felt like a spike being driving into my left temple. It is almost always (>90%) on my left eye, and that same eyelid droops. Currently with my 2nd neurologist (really like him) and trying Ajovy - it has decreased the severity of migraines, but not the frequency of either migraine or cluster (still get up around 2am 15-20 nights/months). Usually, 50mg sumatriptan (oral) with a "Goodys" will work, but leaves me exhausted the next day. When this COVID dies down, would love to talk with you. Will definitely discuss with my neurologist!
Emgality 300 mg is approved for cluster headaches
I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
@@nancywalker-keay8361 FOH with your witch doctor crap you dumb bot
I find that I’m just literally utterly exhausted after a CH. I also have migraines. The med is the same Imatrex but I am not completely mind and body fatigued after a migraine, even though used Imatrex. ( I use 25mg oral for a migraine ) ( 6mg subcutaneous injection for a CH ) I think it is the actual CH that makes you exhausted rather then a side effect of a med. I know some meds can make you drowsy, but if you’re talking just ran a marathon can’t move don’t want to think exhausted. It may be a symptom of your CH. I have experience with a close family member who has Grand mal seizures and gets the same way. Just utterly fatigued. They have seen me after a CH and recognized it as the same fatigued. If I can push through it ( you should really rest but kids life ect) 15 mins or so I can feel my energy coming back. I don’t drink any caffeine but I heard that it can help with the CH itself and the fatigue felt after. Especially if you’re having your episodes 3-6 times a day and close together like mine. I know someone who uses Red Bull to help theirs but I would suggest a more healthy alternative like a strong cup of coffee or black tea, even a coke. Good luck ☺️
Im 15 and have had clusters since I was 10. Truly the worst pain. Currently on monthly emgaility and sumatriptan injections for a attack then high flow oxygen. So fun LOL
Good day Dr.! Your information was satisfactory. I'm a cluster headache sufferer for more than 11yrs. When in an attack i usually cry like a baby. Not only for the intense pain, but knowing that im completely helpless and it affects the ppl i care abt around me and that scare me the most bcuz they just have 2 watch me helpless and cant do anything even though they try 2 help. Some over the counter meds sometimes work and other times it doesn't. But i will try 2 get the oxygen like u mentioned. I thank u for that valid info.
I'd like to share what worked for me.
What you are describing is worse than the migraines I get...however, I think this will work for cluster headaches...this may seem too simple and you may think to dismiss it, but because of how it worked for me, I am convinced it can work for you.
3 things:
Most likely your body has contaminants like heavy metal, so stop using any non-stick pots and pans and the like (basically, remove the source of contaminants;
Do simple detox that includes soaking in baking soda and pink hamalizan salt or sea salt (you will find examples on youtube);
And finally, add magnesium to your diet; in supplements yes, however if you really want success, have a raw vegan diet along with a good magnesium supplement
....its easy to say this wouldn't work, but, try it for yourself.
Off-course, its like building muscles, its takes persistent consistency, so be encouraged.
Amitryptaline.. don’t think I spelled it right worked for me. Only used it at bedtime. The side effects were hard on me but no CH during that time. I quit taking it and they went away until this week. Hoping this is a fluke because they were not over the top painful just painful.. big hugs to you all. This is a hard road🙏🏼💙
The HAs come in clusters for 6 or more wks, and seem to correlate with seasonal changes where there are a lot of storms and very sudden changes in air pressure.
I've heard cluster means they go away but mine ne er completely do. They come in two parts the first is a mild headache and the more severe is the cluster that comes several times a day. However, I wake up with a basic headache when I awake and when I go to bed. It's not the worst pain I've ever had by far.
Im in the worst "Cluster period" I ever had? My girlfriend called after ambulance on 2 occasions last week. Im totally exhausted and dead scared for the next episode? Im wondering about Morphine or Opioid treatment? Furthermore, I wonder what help I can expect from a dentist?
Im desperate for any relief!
Have had severe severe pain in div 2 trigeminal nerve after ENSS sinus surgery in 2020. Seen dr graff Radford and MANY other specialists for neurology- 25 other specialists said nothing found. 25 years later- debilitating pain continues.. help?
I have suffered from CHs for 30 plus years. Was correctly diagnosed in 1997 and discovered Imigran Nasal spray in 2008. This treatment not only stopped the headache within minutes but also shortened the cycle pretty much immediately. I have been in remisiom for approx 5 years until 3 weeks ago when the CHs started again. I have been using imigran nasal spray and am usually getting 2 headaches a day but they have persisted longer than usual. Im on week 3 now. I am going to see my GP to suggest some other form of treatment. Thanks for this video. Very informative.
I've had them for 35 yrs. As I get older I get a 5 yr break. Used to be 8 months out of yr.
Tried everything short lived. I hold ice on face to get rid of it go back to bed repeat. They last about 6 to 8 wks.
My endocrinologist said my hestimime and cortisol normal while I have clusters.
I now have ulcers from pain all these yrs perm droopy eye high BP and heart issues. Long term effects are serious because of sleep deprivation .
From trying all pills I also have cysts on liver.
My Dad had them and died at 54 while having cluster. He had a stroke then heart attack. He used to pass out from the pain.
I'm from Philippine my mother suffering cluster headache ..68 yrs .can you give me alternative. Home remedies. Thanks
Good day Doc..recently had an attack of cluster headache...it comes on every two 2 years.Yes.very painful.it stays with me for about 5 to 6 weeks.Been having these headaches 2016..2018 2020 and 2022...HOW CAN U HELP GOING FORWARD TO OCTOBER 2024
I've been haveing them for alil over 6 years currently coming off a cycle of headaches now they were light not as extreme as the last cluster cycle that hit,my right eye would swell ,water,my nose would run,and my head would go threw excruciating pain, a very hot rag n dark room seems to knock it out in 10 to 15 min for me with the hot towel on my face were pain is...
And they just discontinued sumatriptan spray in australia because of 'commercial' reasons.
I've been having these cluster headaches for about 6 years. The left side of my head aches and feels is if someone is stabbing me behind my left 👁. My eye begins to water and then my left nostril is filled with mucus. My episodes start at the same time at like 10 am. It will last 4 to 5 hours then not re appear until 10am the next morning. I've thrown up because of this pain as well 😪 😞 😔 😩 😫 🙃. It really does suck anticipating it too.
It’s a throbbing pain that’s terrible been getting them since preteens
I am having a cluster period right now,i usually use varapamil but i don't remember my usual dose can you give me some in sight on what measure to take?
I've used Sumatriptan and the slap backs are horrific 😢😢😢😢😢
Do your eyes get affected by migraines burning pain
Hi Dr. Mark
Thank you very much for the video.
Since you are doing researches on cluster Headaches ..Just wanted to inform that I have these Since I was 11 yo..and as I remember when I was a child..I used to get it on the left side for so many years and then changed to the right side....I even in one of the attacks had it on the right side and few days later shifted to the left side.
I don't really know...maybe mine is different..or the devil inside my head has been changed 😬
My first ever episode was on the right side of my head in september 2004.
Every episode since (usually 1 a year, some times 2 a year sometimes a year or 2 year gap) have always been on my left side since then.
I have HBP, and lately I have started to having headaches above my eyes which is something I almost never have, not both eyes simultaneously, from the pain threshold that you are describing, I haven't experienced that type of pain.
5 years, chronic clusters..3-5 a day..thank god for emgality and oxygen.
Omg 2am.....yes always!
In my case it feels like my brain is trying to explode out of my right temple. My doctor gave me a prescription of sumatriptan sub injection pens, that really does it for me. I press it against my thigh, push the button and the pain slowly goes away in about 5-6 minutes
I'm 47, i've been having migraines everytime I had my period since I gave birth 17 yrs ago... But just lately I've been experiencing one sided headaches which was so severe..it even wakes me from sleep. I thought it was just migraine just in different form. and I suffered from dizziness too everytime I have them. Just last week, I felt like the right side of my skull was being pierced with a knife...my right eye was so so painful i had tears coming out of it.... Yesterday I woke up dizzy so i just stayed in bed, as everytime I moved I wanted to throw up... then at about 9pm, those piercing pain on the right side began, then my right eye started to hurt, even my right cheek and temple were throbbing... I wanted to cry from the intense pain but i knew it wouldnt help... it lasted maybe 2 hours or more...
I'm confused...i get headaches that are over 12 hrs, pain left side of head, left side of neck & spine.. i have to lay down all day.. teary left eye and runny left nostril..i get warning signs like sensitivity to light & noise.. and a chest feeling like fever with arrhythimia.. my tiger is mostly mental
This morning my headache included a minor nose bleed on my left nostril which is the side I always have the eye pain. I have been seeing a chiropractor which I thought was helping but…..it’s back.
I have cluster headache and wouldn't wish it upon my worst enemy. Snorting a large amount of ketamine is the only thing that I have tried that works for me, relieving symptoms massively in about 10 minutes. My doctor is recommending me oxygen therapy, but I haven't tried that yet. Luckily I only get it a few weeks a year and only one attack a day.
I suffered for 20 years...god offal..went to DrSaphers clibic in AnnArbor..mich people around the world went to his clinic..when I went through menopause the headaches stopped.. 20 years of horrific pain..I feel for all who suffer from this...
I have been diagnosed for only a couple of years now. I am pretty sure I had them before then and thought they were just an isolated migraines. It's only my right side. I get blurry vision and even lose vision in my right eye. When I am not having a full blown cluster, I feel like I always have one trying to come on. Almost like a car that you try to crank and just doesn't turn over. Am I crazy?
Not crazy. I say I can feel it lurking right behind my eye, waiting to spring up. I’m generally aware it’s there. Seems like as soon as I forget about it, it reminds me quite painfully, it ain’t going away.
Hi I'm reynalyn Gagelonia 30yrs old I've been suffering in cluster headache it's been a 1month
How do you treat it
can cluster headaches be caused by Abiraterone and what can be done for the cluster headaches?
everyone here is so old im 16 and have extreme episodes where i just cry bc it hurts sm : ( i want to take magic mushrooms but i dont think im allowed to
i am 64 and have this CH for 48 years and still alive
most important is pain control that is high flow oxygen 25 l a min try it pain gone in a second
I started with migraine headaches went to see some people and they told me that it was in my head and it was psychological I was wanting to have a routine migraine daily involving a lot of vomiting and it was a ritualistic thing that I just had to do this went on for years finally I had went to someone that said that I needed oxygen therapy Raya drugs I can only use so many of them because of side effects to get rid of the headache and they diagnosed me with cluster headache that was a result of ignoring me about migraines how often does that show in your study
Man I have been having this since 24yr of age...So painful...
Since I was 15🤦
after a cluster, I went back to working out tear my shoulder strips and didn't notice until 8 months later
These cluster headaches are awful just awful! I’m wondering.., I didn’t start getting these cluster headaches until I had an accident at work. It resulted in having a spinal fusion. Ever since I’ve been getting these like clock work. Anyone ever had this kind of experience?
U can help me.🌷im Ella and I have constant 6/10 annoying nagging dull ache everyday for 3 yrs above my left eye followed my tingling to the side of my mother and checks idk if it a headache its constant.
That's so sad sweetie, I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
@@nancywalker-keay8361 I will look into it I've had it for yrs and still it's so constant tho very exhausting.
@@unapologeticella4540 kindly send me your whatsap number and email address so I can help forward it to the doctor okay. he can also help cure yours permanently once and for all ♥️♥️
Ive been panicked thinking i have a tumor. Ive always suffered migraines, got the Jennsen shot and now Im having this...
I just have a question .. is this cluster headache in anyway triggered by allegeries .. cos this is Soo difficult to manage .
I am 70 yrs old I have had cluster headaches for 20 yer. Nothing works. Who can I see I need a lot of help I am in pain most every day.
I know u can help me Dr🌷
I'm 27 years old I started getting cluster headaches just over a year ago.. I'm using 40mg of imigran also frovatriptan... Reduces it but does not get rid I get it in my right side of my head... I get ear weirdness too like full ear... But to me this is not a headache it's more like a ball if fire in my head... Verrry uncomfortable
For me, Ear pain is usually a sign that the attack is coming to an end but yours sounds pretty bad.
-You might have Migraines as well as CH, but it could also be your CH's are so severe because of other reasons such as seasonality, sleep patterns, diet etc etc....some people avoid certain foods they know to be a trigger, temperature can also be an issue for people....It's worth looking at what you were doing and what you consume in the hours/days before an attack
I've had a headache almost eveyday for the past 8 months. All i get is painkillers, they don't touch my headache. I don't think my GP's understand how much pain i am in. I'll move upwards & almost faint. I'll turn just a little instent pain!. My pain is normally around mt left eye on my eyebrown. I had a stuffy nose on my left nostrol. I'll also get a sharp headache on the back of my head & this all started just when i turned 19-20 i'm now 21 & it's getting worse. I've not really had any brake of my headaches. It's making me quite upset & angry being in pain all the time. My vision isn't effected at all but my mood can easily change. These headaches will also last around a few days then will ease for a few hours and restart. What type of headache do you think i have?
There are a number of possibilities, and you really need to see a neurologist for a diagnosis. By the sound of it, the medical professionals you have seen haven't been trained to deal with headaches of this nature, which is still common even in the richest countries. I know that's easier said than done, but you really need to do so. All the very best.
I have gotten the botox injection but the doctor injects the occipital nerve but his not getting my headache as I have it.
Can Gabapentin help?
Great information , very true describing the pain. I have this evil headach 15 years ago but it os undiagnosed and i was always treated as migraine patient and most the time i just suffer and wish to kill my self because the migraine and the pain killer therapy doesn’t work . I was diagnosed only 3 month ago . I didn’t try oxygen yet.
That's so sad sweetie, I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
I'm 35 and suffer with clusters. I wouldn't wish it on my worst enemy. My headache hits at 1:30 am every morning and is gone by 4. But it's not every night. It'll happen for about a week and then I may got a month without one. But they are hell
I suffer from these every other year. Always an odd numbered year too so they may get me again in 2021. Sumatriptan works for me. AMAZING. The injections from an epipen-like device. Gone within a minute or two, They are the worst !!!
@Vinnie Pasquale when I can get it ....I use
Sumtriptan injections
My doctor prescribed me the oral version which stops the pain but makes me feel like crap, everywhere I’m reading all take the injection instead of the oral, why???
@@camstat4067 The injections are expensive.. They are about $100 per dose so a lot of insurance companies wont approve the injections because the pill version is cheaper. It sucks I know !!
My brother have them for 24 hours😢
I have all the signs of cluster apart from i don't have watery eyes or nose but my eyes swell
I wish you could help me....i really do
He actually can. Just make an appointment!
I know of a doctor who can help you out with this. He also help me from this same disease , He can also help you cure yours permanently
1 month ago I was diagnosed of CLUSTER HEADACHE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including CLUSTER HEADACHE , at first i doubted if it was real but decided to give it a try , when i contact this herbalist via his email and he prepared a CLUSTER HEADACHE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 5 months of usage, I am now free from CLUSTER HEADACHE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for. He can help get rid of yours permanently... Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.
@@nancywalker-keay8361 anyone who uses the word cure is a quack
I had it for years and I've always thought it was sinusitus ...
Hi sir, I m from India. One doctor said me cluster headache and another said trigeminal nuerologia. How can I know I m suffreing from which disease. I have pain upper the eye. Not on face.
I have both, TN and CH. The treatments for one do not work for the other and vice versa. TN affects more of the face complicating eating, drinking, cold temperatures and touch sensitivity to the affected area of the face/jaw.
Cluster pain will always be behind one eye.
Best of luck to you, these are tough conditions to manage.
@@dmlonghorn when I eat, brush, shaving and goes on bike without helmet and air touches in left side hair the pain continues. My pain is upper the eye area about 2 inches. Not on face.
I’m 54 male have had cluster headaches for over six years tried everything possible only medication that has work wonders it’s lamotrigine 200 mg four times day.
I be been suffering with migraines and cluster migraines since my first child when I was 15 ,28 yrs ago I had a csection .theyve just gotten worse since my second child 2004 .im not a smoking of any kind I’ve got dentures now so idk y I get them more btw I’m from Redding California
Mary Austin is that would be a life changer I deal with severe chronic pain and other physical pain a migraine just makes life unbearable
Hi I am Lisa from the Philippines. I don’t know if this cluster or this regular migraine only. But it’s so disturbing almost everyday. I don’t know what to do with this.
Is there any food that need to eat to minimize the pain? Or what food should I need to stop eating? Pls help me.
Or is there any pain reliever?
And I cannot sleep because of the pain
Hiya Lisa, I have cluster headaches for nearly 20 years now. Get ice pack on and use vapour rub vicks.
I have clustol head ace