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Spotlight on Migraine - Episode 13 - Cluster Headaches, There Can Be Hope
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- Опубліковано 15 сер 2024
- Mark M. candidly tells us about life as a cluster headache patient. The attacks, as he prefers to call them, were relentless for decades but he has finally found a non-traditional treatment that works for him. Find out more about Cluster Headaches by visiting ClusterBusters.org.
*The contents of this podcast/video are intended for general informational purposes only and do not constitute medical or legal advice; the content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The Association of Migraine Disorders does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.
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I broke down in tears listening to him describe the pain. It’s a relief to hear I’m not alone.
It sucks the life out of me, and leaves me a shell of the person I used to be.
Thank you for sharing. This truly means a lot to me. Just knowing I’m not alone helps.
Lynze520 ! Cluster headaches are the worst
Lynze could you possibly message me, I'm looking to reach out to more people with cluster headaches as I was diagnosed last year it's taken my life on a downward spiral quickly.
Please give me solution ... I can't bear this pain I'm thinking to die
Hahah
I'm 16,and I'm experiencing the terror of cluster headache, I don't know if a teen like me are able to experience this kind of headache. Because they said that it usually affect on 20s-40s of age, but the signs and symptoms of the cluster headache are happening to me, everyday when I wake up it hurts like a arrow is peircing my eye and my left side of the skull is like being crushed, I usually try to sleep when I feel it, but when I wake up after 30 minutes I feel it again. I don't know what to do.
I'm live in the Philippines BTW
I've been living with cluster headaches for 11 years. I found that going for a run during a cluster headache has helped them go away A LOT quicker. I think the heavy blood flow and intense oxygen flow from running helps immensely. I even go for a run when they wake me up at 2:30 in morning. I figured, that i'd rather suffer through a 10 min run than suffer from a 1 hr cluster headache. Running is the last thing you feel like doing during a cluster, but it's Definitely worth it!!!!!!
Chis, that’s great. I’m so glad it helps. I may have to try it.❤️👍🏼👍🏼
Really ill try this but i suffer also during that time around 3am so im afraid of running outside at that time bcoz its not safe ill try to do running around the house lol
Thanks, ill try it next time.
please try oxygen treatment...save whats left of you....100 percent oxygen at 100 percent with rebreather mask for 12 minutes.......no need to suffer
Thanks mate
This is a living nightmare for me , ive been suffering cycles for 3 years now but the last couple of years were only at the end of august / start of september but this year have started in april ! Im on sumatriptan nasal sprays but only get prescribed 2 shots at a time which is no good when i can get up to 3 bouts a day. Really depressing i spend my pain free periods thinking when am i gonna have another one , always guaranteed to wake up with one same time every morning. I pray to god to take them away , god bless all that suffer.
God bless you & may God heal you... they wake me up EVERY SINGLE DAY... its exhausting
I’m with ya. 20 yrs now for me. I’m day 25 of my hell cycle now
Heard there's a stem cell treatment that seem to work for some people also magic mushrooms(psilocybin) work - they seem to totally stop full cycles, but you have to ride out the trip, but it's a relatively small price to pay to stay pain free.
My father has had this for years and years and he takes Isoptine everyday and it helps tons he says. Might be worth a shot!
How many months it’s last?
I’ve been cluster free for 12 years now. It started when I was 17 and lasted for 22 years. I’m still nervous winter time waiting for spring to come. Every morning for 3 hours from September to late November ( southern hemisphere). You may laugh at me but sex helps, it definitely numbs it a bit and can take it away. After a serious dose of lithium it finally went away, but it will never be forgotten. It caused a dropped eyelid and caused my right pupil to dilate permanently. That was 12 years ago, it’s no joke and many of us suffer in silence.
I literally just watched this guy tell my story WORD. FOR. WORD. However, I have had them for almost 40 years. I was severely and repeatedly abused and traumatized when I was very young, and highly suspect that the raised cortisol levels had either shrunk or deformed my hypothalamus. The silver lining is that I have a hunger for knowledge to finally figure out the beast and help all other cluster headaches sufferers (survivors) get our lives back.
I'm writing this while suffering an attack and it is such a bad and excruciating pain and it makes me sweat and feel cold and hot at the same time, and sometimes the pain gets so bad that it makes me throw up and I would pass out randomly while in the attack.but gladly after I throw up it ends but I think it's because it I pass out for so long.
Thank you for this video. I have been suffering Cluster headaches for almost 10 years. I am currently in a cycle and feeling hopeless. I slept for about an hour just to be awoken by another. I feel so terrible for my wife who just wants to help and like this gentleman said being alone is best. I wouldn’t wish this on anyone. Sending my love to my fellow cluster friends. ❤
Try sleeping upright in a chair - back straight - chin on chest.
It may take up to a few weeks but the cycle will be aborted after you have slept without pain for around ten days.
Same here. I feel bad for my wife that feels helpless every night as I go through this. I try to go downstairs and go through it alone but I know she hears me. ☹️
I've had these for almost 10 years and this guy describes it so well. Ive gone to the doctors many times and never have they mentioned that the symptoms are cluster headaches. Ive always been told they are migraines but always tell people how intense they are. Whenever I get them I feel like ripping out my eye or literally breaking my own nose. It gets to the point where I bend my nose to try relieve the pain and push my hand into my eye socket. Hoping to go doctors and tell them that this is what I have and see what they say. Good luck to anybody else who is suffering this as no one ever understands. And it's so hard to get on with life 😭
Yes, I am starting to get them again. The pain is horrific . They come and go. Ice on my head, shaking, cussing, crying. Taking deep breaths, holding and let it out slowly. May be helping, not sure. Going to get a oxygen tank. Hope you feel better soon .
I’m 55 yrs old suffer chronic cluster headache for 16 yrs. I average 5/6 attacks a day .being chronic we don’t get cycles .i find it hard to want to live .i lost my entire life .i stay in my room with my oxygen the angle for ch attacks . I got the rope read on many occasions. I feel I’m alone but fight bcoz I love my children.
Hi, after 50 yrs age did you still get Cluster Headache?, I heard with age its go away.
Plz share your experience, will be helpful. thanks
Sending you love and light. These things wreck me and you are not alone. Stay strong. Try Psilocybin. Hoping it helps.
@@Abhi-ow1drI am 62 and have had clusters 2 years ago that went on for 15 months up to 4/day, that was the worst and longest cycle I have ever had in nearly 40 years of CH’s, I have been prone to cyclic attacks every 2-3 years for 3-4 months at a time.
Sorry mate, they don’t go away with age it would seem so far.
Best description of the pain, something from the inside wants the burst out, for me heat heat and more heat
Please do a heavy metal detox
YESSS heat is the only thing that helps me. Hot showers and a steamy environment 👌🏾
Yes heat works for me too ...
Thank you Mark for sharing your story. I feel your pain clusterbro. 30 year CCH, chronic since Oct 2000. Sorry you have to deal with these MONSTERS too. I'm glad to hear that CB helps you. Bob has done so much and has helped so many. I wish I could still use MM but unfortunately, that is not an option for me anymore. Pain Free Wishes to you. ~ Mr Clusters ~
This guy describes the pain so aptly. I've been getting cluster headaches since I was about 12-13 (about 10 years) and trying to get through teen-hood and managing adulthood with such a debilitating disease was so hard. Not many people really understand what they are and most think you're just making it up. Thankyou for sharing this, it's a relief to know I'm not alone.
Are you treating it successfully? What are you using?
We hit the pain jackpot cluster heads, I'm on my 8th year and it's a fight for life each attack. I freaking speak in tongues. I think we're actually feeling hell, I even drool and feel so agitated worse than rabies I bet. I am not joking, don't dare talk to anyone having an attack it could result in major injuries on one's self. Stay strong cluster heads I wish you long remissions but hell will return.
"Speak in tongues!"
U made me laugh- thanx ;)
I described it once long ago as cop suey talk....
Chop suey talk....
"just go 5 more minutes and it will be ok", same thing I do when im outta Suma. Keep on keeping on man! Were with you.
I try not to watch the clock (can hardly turn my head anyway) until my typical 35 have passed, the sweats stop, and the relief washes over me.
Thank you so much for sharing your knowledge, lived experience and the truth about clusters Mark! Also, as a cluster headache patient I really appreciate the migraine community including clusters in these awareness campaigns.
Ask your Dr to try pregablin
Please do a heavy metal detox to get rid of cluster headaches
I sympathize with his not being able to watch a person in an attack. I’ve watched suicide headache videos all day, and I’ve cried all day. I can handle my own cluster pain, but watching others go through what I KNOW is absolute hell is just too much. I cry for their pain because I live it myself. I don’t feel sorry for myself, it’s just hard to watch, and not be able to help! Just how my wife feels, and I think I finally understand a little about how she feels when I’m in an attack.
Everyone crying and I am right here with you. Couldn't watch without crying 😢 I've been suffering for 25yrs. We are special! I will never let this head banger in our heads win. Love and compassion to all of the suffers.❤🙏
Id like to not be "special" just normal. Able to eat and drink whatever without the worry if its going to trigger in an hour after.
I couldn't help but to cry the entire length of the video, thank you for doing this and thank you for sharing your experience, I've been sending the link to this video to all my family and friends, I just don't have it in me to explain what I go through.
Clusterhead for over 30 years , ate a bag of mushrooms 🍄 had the worst attack after , it’s been 8 years I’ve been headache free . It worked for me . Saved my life
Hey Lazaro, I have also suffered from cluster headaches. I currently use verapamil to treat it but I rather use something drug free that kicks in quicker and doesn't come with as many side effects. So I just want to get this straight, you went to the store and just bought a bag of mushrooms, ate them all and now you haven't had any since? how many do you have to eat? is there a brand? is there a certain way you have to eat them? I'm desperately looking for something to get rid of these. Im tired of these ruining my day.
Please tell me which strain mushrooms you had success with. I also had success back in 2014, but I don't know the strain. I just tried goldren teachers mushrooms and it didn't work, so I am desperate to be free again.
@@johntrosko6260 check out the website Cluster Busters, the forums. You will find your answer there with some digging around with psilocybin dosing as your question. I have known about the site for less than two weeks, and info I found there has already helped my husband tremendously with his cluster headaches. Melatonin alone has made a huge impact in a very short time. Best of luck.
i am still alive with cluster headache from last 15 years... very dangerous pain... :-(
Fellow CH warriors...oxygen therapy is the best, and safe! During an attack, I try to meditate the pain away, visualizing someone smoothing tattered strands of something...anything. it works! Deep breathing exercises also help, before an attack and during an attack. No meds for me, but will inquire about the ganglion nerve block. Nose spray with Capsaicin can help too. Good luck and God bless you all. This is a horrible disease with pain on a scale of 1 to 20, in a heartbeat.
That visualization technique helps me as well. Fining a mental calm spot in the chaos does too. Freeze my neck in a certain position and remembering to breathe through the pain. Good luck!
I’m running an in-depth research project using a natural therapy to break a participant’s headache cycle. So far I have almost halved the participant’s headaches, which is really promising. Once I’m done, I plan to share my findings. There is so much going on right now in this area all over the world and help is on its way, there hope for all my brothers and sisters out there that are tired of suffering. C
Please do a heavy metal detox to get rid of cluster headaches
@@gavindabishinda1460 I have already tried taking NAC orally for months and it doesnt do anything.
Please have a blood patch done. I had cluster headaches for 8 months straight, 20 to 30 minutes long up to 4 times a day. Once I received the patch I never had another attack. It has been years. Please just have a doctor do this for you. Keep me posted and good luck!!!
I am a cluster headache patient for more than 10 years.
This year I am experiencing more than 4 months cycle
This is the second cycle this year alone.
When the attacks start as explained very well in this video, I set down and start breathing heavily and fill all my body with as much Oxygen as possible which make me a little bit dizzy. But that's OK. I try to relax and massage my neck, shoulders and back muscles as much as possible.
But it takes only 20 to 40 minutes for the pain to relieve. That's a big achievement in my records with this headache.
If I do not do the breathing and relaxation exercises, the pain would last for 3 to 4 hours a day.
It's my season, people see me crying and tearing think I'm a cry baby I'm a 31 year old 9 years with cluster headaches it's the worst pain ever 😭
Otrivin nose pray for colds breaks the attack for me. I now use it for prevention as well.. Might not work for everyone but it's definitely worth a try. It truly has saved my life.
Thank you. It's worth a try.
My specialist dismissed me with "a rare chronic migraine disease with a cluster comorbidity" I didn't know what clusters were before my first cycle. This disease is ignored and is deadly!
Make sure everyone with cluster headache tries an SPG block relatively early in the process - the relief is amazing for those who respond, completely aborts the clusters for me
What is SPG block ?
What is it can u tell it helps.
Sphenopalatine ganglion block
Mark describes the pain and emotions so accurately. My jaw dropped at the thought of suffering from attacks for 32 years, I've suffered nearly identical attacks for the past three years with only a few remissions lasting a month each. Back when they started, one a day was the maximum I would expect but they are now 2 or 3 times a day, 4 on particularly bad days. Same as Mark, no medication really seems to help long term, but a doctor prescribed me medical oxygen and it is the most effective way of trying to stop an attack for me when they occur. Dissolvable aspirin sometimes works, but I'd recommend any sufferer to speak with their doctor about medical oxygen if they haven't used that treatment before
Thank you so much - 20 years for me - I'm not alone....
When I get attacks, I become aggressive, angry and anxious. I get terrified and I also get suicidal thoughts. That pain is just terrible and undescribable!!! I'm currently going through the cycle
JST SN - I am so sorry you are going through this! Get yourself to a neurologist ASAP! There are different drugs to stop the pain during a cycle. I have had two cycles a years it seems likes forever, spring & fall. What works for me is taking prednisone for 20 days at the start along with depatoke.. the prednisone helps until the depatoke builds up in your system. Hope this helps. There are also other drugs. Oxygen also works for MANY MANY PEOPLE! Hope this help!
Look into psilocybin, said to tremendously help clusters.
I do not want to jinx myself, but I have been cluster free for over 25 years. Praise God! I pray they do not return. I am thinking aging may help. The pain is indescribable. People use to tell me, “oh yes I have those bad headaches too”, I could only think, no you don’t. You have no idea. So you that are suffering, those that have been in your boat, we feel for you and pray for your relief. God’s Blessings to you.
i can relate to this man. its horrifying pain. i feel so alone as i suffer in silence. friends and family dont understand and keep referring to people they know who suffer with migrane headaches. i hope i am strong enough to get through this alone.4am in the morning, who do you turn to? no one can help anyway
Service dog who detects histamine?
Talking about anxiety. it gives me anxiety listening to other people talk about there own experiences. When he talks about witnessing someone else having an attack for the fist time i could feel his pain. i don't know what i would do. i will be looking into this clusterbusters thing tho.
Please do a heavy metal detox to get rid of cluster headaches
@@gavindabishinda1460how do u do it?
@@pibkaveronica7622 chelation therapy is a start. Try to avoid synthetic treatment, you can use Cellcore bio toxin binder. Also psilocybin in micro doses will stop the pain, in large doses 3g to 5g will help to heal the cause.
Hi, just having my first cluster headache. It's starting 3-4 weeks ago. Last night had been the worst. Nausea, pain throbbing to burning stabbing pain.
Seemed like the Dr. Didn't believe me.i sat 4 hrs the first visit to the ER and left. Just couldn't stay without making noise. The Dr told me to go back to the hospital. I waited a weekend. 8 hours later I was given a cocktail that helped for about 1/2 hour. All I wanted to do was leave. Had a scan earlier. I am not dealing with this very well. I feel your pain, it's not anything you can describe well to anyone except brain feels bruise.
I feel your pain friends...Been diagnosed with these since I was about 19, I'm now 39 and the pain is absolutely no different. Someone needs to have a good imagination to even begin to pretend or merely comprehend what it is we're going through, and one must have and even better imagination to try to explain it.. I'll tell you what though, this pain will stop every soldier in their tracks and bring them to their knees in the middle of a war.. it's as if there's a small tiny gremlin setting fire to every muscle in your neck slowly controlling the fire up the backside of your skull grabbing, pulling and swinging his way up behind the inside of your face using every nerve along the way like Tarzan. Then finding a nice little spot behind your eye to perch up on and slamming the backside of that eye with a sledgehammer that yields the power of Thor... One piece of advice I can give is that you're most likely going to end up hurting yourself more trying every medication imaginable.. and most likely right when you think you're okay it's going to hit you and you're just going to move on to something else, anyway one thing you're going to want to practice is self-control.. try some breathing techniques, perched lip breathing or box breathing, you cannot let yourself get to the point where you want to go insane it's just going to hurt you more your blood will try to travel through your vessels even faster and harder and that is when you get to the point where you want to pass out and start vomiting. Try to stay strong it will pass, You're not going to die even though we all know it feels like we are, there's nothing that can help us right now more than ourselves.. do your homework read up on this stuff and look into your vitamin intakes take magnesium, try Cayenne pepper vitamins. there's even a cream that you can apply to the inside of your nose. I personally have not tried that yet but believe me I just had one so I'm sure I'll get there. Best luck to all of us 🤕🍀🤕🍀🤕🍀
No one describes the neck pain. Are we a minority I wonder. Feels like a 2x4 being smacked on the cord of the neck. It’s almost always my precursor symptom.
@@TYoung023 The neck pain and tenseness of the muscles are definitely nothing fun to mess with either.. It's all the nerves we have that are connected and get affected when the migraine is set off. Within the year from last leaving my comment, I have found out that giving myself a brain freeze actually has stopped the cluster migraine in its tracks, I was drinking a frappe from McDonald's actually and I ended up getting a brain freeze and this was during my migraine season so I was sure I was getting a cluster migraine because the pain in the eye had started.. And that's where it starts for me. So anyway I mean I've tried everything to stop these things, And I thought to myself the pain that I was getting from the brain freeze was 100% exactly like getting a cluster migraine, one day when I was getting in attack I luckily had something very cold to drink. I chugged it got a brain freeze. It hurt lol.. but the migraine stopped. Try it out. You might be really amazed Best of luck my friend 🍀✌️
@@ronnieberringer5734 Thanks. I’ll keep some ice cream on hand! It’s worth a shot.
I aborted a bad one once, in a weird way. I was sitting on the edge of the bed suffering and moaning and the cat decided that biting me in the leg would help. Haha. Probably though I was wounded prey or I was just freaking him out. Anyway, I felt this sudden rage and forgetting the pain started to run into the other room to yell at him. I didn’t get 5 steps when I realized the attack was utterly gone…no shadow or anything. Some chemical release in the brain stopped it instantly! Forgot all about being angry at that point. Really strange and kind of funny. Just have to train a pet to surprise attack you during an episode!
Seriously, trying ginger in raw and pill forms right now. I googled foods that have a similar effect to sumatriptan. The research continues…..
@@TYoung023 cats truly are amazing creatures aren't they lol best of luck 🍀
I can relate to everything he’s saying about his headaches , but he never said WHY he’s been headache free for 16 or 17 months. Those are the answers people are looking for .
Because the relief is a class A drug.
Gimmie a 1000 subs without videos where do you get the mushrooms? I’ve heard you can grow them but I don’t know how
I tried mushrooms once and they didn’t help at all. They just shifted the pain into my cheek bone which then felt like it was snapping over and over. I stopped taking them and the pain went back to behind my eye / temple as it was before.
I’m in a cycle currently and just got a repeat prescription of verapamil. These are the only things that have ever done anything to help with my headaches.
Please do a heavy metal detox to get rid of cluster headaches
It's because they come and go. At random.
I've had these things for 40 years. The secret is as soon as you feel the shadow, take a per or a vicoden. Fire up the strong coffee and get ice on asap. I never get full blown for more than 5 or ten minutes as my body is so used to them, I wake up as soon as I feel the shadow. Only way to treat them as far as I know.
Does it go away with age ?
@@Abhi-ow1dr Well, I'm 65 now and they seem to have calmed down some, tho I could just be having a couple good years. That does happen. I've also found that a steroid before bed when I'm getting them works wonders. For me sleep is a major trigger. I can't take steroids 3 or 4 a day like "they" wanted and don't have to, just before bed. During the day when awake I do what I described above. Nothing else works for me and is as non invasive as what I described.
Fear is a very real emotion, anxiety is a characterized state which is the fear of fear.
I am from Trinidad and I started getting cluster since I was 19yrs ,I didn't know what it was so I sort medical attention only to realize if is of no help to me. It's a spiritual retro scanning of the genetic, also the kingdom of God healing program helped me. First take a cold bucket of water and soak yourself, have a fan for breeze, take deep breaths in and out of the nostrils only keep mouth closed. Wet head as often as required and meditate on what Christ endured on the Cross for you and I . Stay strong 144 ,000.
It’s hard. People have no clue. I thought I was done with them. 3 year break. I can see his situation is real. I have never met another person who has this.
I just came off a three-year break, looking forward to a six-week stretch 3 to 6 a day. I'm right there with you.
Look into psilocybin, said to tremendously help clusters.
Everything about it is kind of cyclically bizarre, I've had them consistently since I've been 16. I just turned 34, and they come like clockwork twice a year, lasting about a month, happening every other day. What's even weirder is that tryptmines (Psilocybin, LSD, DMT, etc) are basically the only things with any efficacy. I've never tried oxygen. Sometimes when I get "ghosting" right before an attack, red-bull can possibly abort an attack. Though it's probably about 1 in 6 times if that happens.
I hear about people using weed or alcohol, which to me is crazy. Dehydration can exacerbate or even trigger an attack for me, and most who I've talked to about it.
which kind of magic mushrooms work for you? I had success once in 2014, but didn't know the strain. I just tried Goldren Teachers mushrooms, but they didn't work.
Hi Mystic. High flow oxygen is the most effective abortive treatment for ch attacks for most people. Don't know where you are in the world, but if you can get it you must try it. It makes my life livable! All the best
I'm on day 3 of my new clustercycle and I'm taking acid tonight... hope it works, it did once before...
Butterflies in my stomach atm
Spend my life searching for answers inject sumatriptan and suffer the other attacks as a lone parent my daughter helps me which tears me up wish I had answers and wish everyone hope never forget Ur not alone in this x
Am 18 and i have these everyday for the past 2 weeks
33 years! Helll ...last week i got a GON injection..with lidocaïne and sort of prednison...i got it Hope this will work!
I'm now 31 and have been suffering from this since when I was about 18 years old , the guy describes it exactly as it is . I hope they find a cure for this .
I used to get these all the time in my teen years. They were usually triggered by too much screen time and stress.
There were also times that I had no idea what caused them. I still get them every once in a while from too much screen time, but they're rare and much more mild than they used to be.
I can only empathise with the people who suffer from these on a regular basis.
Wanting to pull my eye out or slam my head against the wall was a constant thought while suffering.
I know that this video was posted long ago, was useful watching this video anyway. The best relief that I've found for myself during those episodes is breathing 100% oxygen 12l/m for 20mn avg. It works fast... the trouble is having at hand asap when needed.
Thank you. It’s exactly how I wish I could explain it to people I care about.. it’s not them, it’s not intentional. It is incredibly hard to manage. If that’s what we’re pretending to call it.
It’s unbelievable how much I can relate with this video 😯👌
Wish you well.
You have explained it so well.
I go through it daily.
Thank you for sharing
Love love love this series
When the oxygen doesn't work, put the back of your head and lower neck
under cold water in the shower. Focus on the lower neck. You can stand
in there or just lean in.
It might take up to ten minutes. Get it as cold as you can stand it.
Colder the better. Cluster headaches come from a nerve problem starting
at the back of the neck. You can also see a neurologist and get Botox
shot to deaden that nerve.
You can get oxygen from a local welding supply. Its the same stuff as
the medical. They don't ask question and I don't tell. I get a 4 foot
tank filled for about $28 a fill. I bought the tank years ago. You can
also rent a tank. You can get the metering valve that threads on to the
tank online, as well as the mask. You have to get the right flow
regulator. oxygen tanks will have two different thread on styles. There
is a male and female style.I get the male tank and female regulator.
What I have is not really a true regulator. Its more of a flow control
at a low level. (Cheaper) Just do a search for the two different Items.
Key words will be oxygen tank flow regulator/control. Cluster headache
oxygen mask.
ask your doctor for verapamil or some type of calcium blocker takes about 2 weeks to work won't take away the cycle but will knock out all the headaches. i suffer from clusters and having a cycle as we speak i started taking 120mg of verapamil and after 2 weeks they kick in have not had an attack in 5 days only small offsets or trimmers. my cluster headaches don't last 15min they last all-day and come every day for 6 months then go away for like 2 years the pain is nothing you want to deal with i no how you guys feel i kno we are all different put give verapamil generic for Calan a shot ask your doctor about a calcium blocker no need to be in all that pain hope you guys feel better.
My daughter takes predisone for a short time period which helps until the verpamil starts to work.
Verapamil works for me I try to start taking few weeks before I know my cycle will start I’ve been getting clusters for 33 years the past 5years taking the verapamil before cycle starts has helped tremendously I have prevented some cycles from even starting
I get them 12 months a year every year since 2016. About 45 - 60 mins they last
Oh I am 40yrs old now and getting a cycle as we speak , don't worry I have become one with it ,it is so rare I feel chosen
This is gold! You sir know what it's about no doubt.
It’s truly a living nightmare.. iv been dealing with cluster headaches for abt 15 years now n I get abt 4 to 6 attacks in 24 hours for abt a month to 3 months thn thy disappear for a few months.. lately iv been getting them from June to august n then again November to February. I hate thm so much. Thy last from 15 mins to abt 45 mins. The worst is when I’m around people n I get an attack. It hard to explain to people how painful it is n I feel lik my family gets annoyed by me when I get attacks. Thers been times Wer I wanted to put a bullet in my head n end the pain.
I go to a chiropractor and have a sports massage when I have attacks. I do a full body stretch when I feel the tingle of a migraine coming on and majority of the time it stops it progressing, if that fails I push hard on the temples on the side of my face and it stops after 10 min. It does wear me out cause sometimes my attacks are early hours I the morning and this lasts between 1 to 2 months. I wish I ever had to deal with this pain, it disrupts my life 😪
I've gotten what I **guess** most closely fits the description of cluster headaches about once every couple of weeks since I was a child, although I'm not 100% certain that would be the proper classification; I've had textbook-description migraines in the past and they carried a very different, nauseating sensation, whereas my routine headaches feel like thumb pads pressed firmly against the backs of my eyes, usually one (randomly) more than the other, with throbbing, hot sensations in my temples when the pain is at its most severe, to the point where I can hear my pulse rushing through my head. Lapses in caloric intake or eating certain salty or savory foods--especially cured meats--are the closest thing I have to identified triggers, but more often the aches seem completely random.
When I feel one coming on I have a very short window in which taking Excedrin may limit the pain to about a 3 or a 4; failure to do so quickly enough will pretty much guarantee that nothing will work and I'll just have to wait out the pain between a 7 and a 9, which can last from six to 24 hours. There is no nausea, dizziness, or light sensitivity associated with the pain, but I do have to remain as relaxed and still as possible; exertion as minimal as standing up or even the act of urinating can immediately increase pain under the temples immensely, but a few minutes of reflexive brow flexing usually succeeds in tamping the pain back down to its resting level.
The worst attack I ever got was in my mid-20's, when I genuinely thought I was going to die from a ruptured blood vessel in my brain; I was in so much hot pain that I couldn't even get up to ask for a ride to the hospital, I was utterly paralyzed and could only cry and impotently claw at my forehead, and eventually fell asleep as it slowly began to subside into a tingle. I got a CT soon after which showed no abnormalities, and I was diagnosed with chronic migraine and given Maxalt and another prescription I can't remember, but they did nothing. I've tried Norco and Vicodin and a handful of other borrowed prescription whatevers during attacks since, to no discernible avail. (Although the Norco did transform the sensation into feeling like the pain was localized... in front of my face instead of inside my head? Like some sort of halo of pain? It was very strange but I wouldn't say it was preferable, it still hurt like hell.) Oddly, the only effective method of temporary relief I've found has been Vicks VapoRub. A dab inside the rim of my nostrils or a jar held up to my nose like a gas mask almost completely nullifies the pain immediately, though as soon as the strongest fumes subside or are removed, the pain resumes just as quickly. I'm in my early 30's now and after all these years I still don't know what the hell these actually are, but I'm thankful I don't have to experience what this poor man endured for so many years, good lord. Anyway, pardon the lengthy ramble if you've read this far, but I'm in the throes of one right now and it's put me in a sharing mood.
Please do a heavy metal detox to get rid of cluster headaches
I have been suffering these types of headaches for more than 10 years now. It gets worse when I lie down.
Sometimes it stops when I get up from the bed. Sometimes it won't stop for anything.
This is such an awful thing to have . I had never even heard of them till my daughter has started to have them. She also has epilepsy, no fits just these awful episodes we call them ,has to be quiet and have a cold fan blowing on her . This gives her feelings of déjà vu plus also the feeling of not really being here. And a month ago today she was told she had lymphoma which is blood cancer, and we think the stress and anxiety from that has caused these cluster headaches.Very debilitating and at the moment she’s taking the maximum amount of pills a day just to get through the day but always wakes up at night with them. I’m hoping for her it’s not going to be an ongoing thing for years like I’m reading here.
I first felt this extreme pain july, August, and September year 2016. 2017,was a period of remission. Then it started in july, August and September 2018. Then remission period in 2019 and 2020....I thought the problem had gone completely.unfortunately the problem has started at the end of may this year 2021, in the previous years it used to start at around 9 am in the morning the pain accelerating up to 10 am when its at the peak. Now it starts at night from 9:00 pm. Its very very painful experience and i don't know when it will end. Im fearing dark as it approach.
I hope this helps someone
Add:
magnesium rich foods, B-2 rich food, maintain constant sleep patterns nightly, exercise
Subtract:
Alcohol, anger, processed foods/ energy drinks replace cigarettes with vape if you can’t quit fully
My daughter in law suffers bad from clusters they are very painful and extremly hard on people's lives
+10 years Now .. i tried oxygen , CBG .. many other treatments .. nothing is really working ! How long can some one live this way ?
I'm 34 yrs in ...
You can make it.
Sometimes we have no choice. I'm sure you can find the strength. Sometimes we have to dig really deep....you can do it!
God bless
I started using a pain cream a dr. Gave me for my back! Ya. It cuts the time down to about 7 mins. I just follow the nerve and massaging. Hold on...its a FKD UP RIDE,,, But the flowers still come up.
Mine are, or feel like an Absest Tooth that you let go, but in your Eye Ball 👀 . I have pain cream for my Ostyo Arthur, and I slather that all over my MUG!! It cuts the time in 1/2.
They just ware me out over time.
CBD oil has helped tremendously. During my cycle , The train seems to arrive about 5:15 pm every day. I know why they are called the suicide headache.
graycloud057 Did you have to take it consistently? How long did it take for you to notice a difference?
I’m desperate. I’ll try anything at this point.
Lynze520 ! - I’m so sorry it took me so long to reply. I take the Green Roads 400 mg gummies toads. In about ten minutes I can feel a difference. Lately the headaches have come back with a vengeance and the CBD is barely noticeable.
I’ve had these for 35 yrs
Because oxygen sometimes works, has anyone tried the Wim Hof breathing method? Surely this would increase oxygen in the bloodstream and possibly help? I don’t suffer from cluster headaches but my father does. So sorry to all of you I hope a cute is found soon x
I suffer from hemiplegic migraines.Been in and out of hospitals more times than I care to remember.also have had 2 full strokes before all that.So,,,on a lot of meds now for life.
Stay strong and God bless you:-)
😢😢😢😢😢😢 i suffering cluster Headache right now....i dont know what to do...i only take pain reliever everyday...it almost one month plzzz help me what to do
I can't take this anymore
How does he live pain free without meds?? I take sumatriptan please tell us how?!?
I am 56..been suffering with this since 1992 at least one 2 to 3 month cycle every year,hated that my kids grew up around it..take verapermil daily and oxygen when I am in a cycle from hell..there is no magic pill or treatment..I just want to know if it will ever stop completely or is this going literally to my grave with me..have also decided to file for disability..the time is right and I have paid my fair share into the system..I hate going to sleep because a hour later it's party time lol..and every 1 and half after the first attack until I go to work the next day..sleep deprivation is a way of life when in a cycle..I would not wish this on anyone..I see why some refer to them as suicide headaches
I get migraines in the summer months here in Australia. Maybe 4 or 5 attacks from oct to feb each year.
Winter I never get them.
Usually at night, on the left side, runny nose, vomiting and clammy sweating.
They sound like cluster headaches, but never have got a diagnosis.
Feel sorry for these ppl who get them daily, absolutely terrible
Please do a heavy metal detox to get rid of cluster headaches
Wow, I recently experienced this for 5 weeks. Last time I had it was about 7 years ago, and at that time I stuck the pain out. This time I got diagnosed clusted headache, I was prescribed sumatriptan, but the sprays. It seemed to help as it gave relief for about 4-6 hours which is such a proposition when an attack comes on. But after 2 weeks, what was 1 or 2 per night became 10 attacks spread over the whole day. As I picked up my meds the pharmacist (not the dr or neurologist) actually warned me about overusing this drug. I dug into it, and realized the meds were making it worse. So I went through absolute hell for 2 days and then it came down to 1-2 per day untill thankfully it stopped. Now around the time I stopped the sumatriptan I also got about 25 grams of shrooms and this immediately made the attacks less extreme and further apart. Maybe its what made it stop even. This experience was for me the last straw when it comes to believing in the medicines that all these "doctors" prescribe.
I havent had cluster headaches but I get migraines that make me afraid that my brain is bleeding or blood is coming out my eye. Its always a VERY sharp pain behind one eye (its always only one eye/side of head) along with terrible nauseua. The best way i can desribe it is there is someone trying to poke my eye out from the inside out or someone stabbed me through the eye into the brain with a ice pick. luckily excedrin helps but I have to take so much that the caffiene gives me panic attacks but at least it helps
Erik Truchinskas - pls go see a neurologist... write down all your symptoms and pre-symptoms to give to him. If he doesn’t help go see another and another until someone helps you. There are also headache / migraine clinics that specialize in the rarer types of migraines.
That sounds like a cluster
The "alternative" methods he alludes to at the end of the video is psilocybin. I would suspect that is the reason why he has been headache free for 16 months.
Thank you. I was wondering about that.
My god cluster headache is destroying my fking life especially during my exam period. Woke up around 4-5 am wjth an agony pain around my eye and left side of my head. Drilling pain
I see me in him. its been over 10 years ive had clusters. Cluster period starting right after my birthday...im scared yall
Galcanezumab, a CGRP antibody is coming this fall for #clusterheadache specifically
Wdym??
Where is it !!....does it work ?
@@russpeaknuckel9525yes it dies! At 300 mg once a month dose SQ
Making plans causes such anxiety. I always worry that I'm going to ruin a trip or event because of a migraine. I'm not a lot of fun to be around when migraine hits!🤕
Mine are chronic... 10+ years
Look into psilocybin, said to tremendously help clusters.
1. Cold sugar free Red Bull through a straw. 2. 100 mg Sumtiriptian. 3. Eye mask. 4. Phillips Evo Oxygen generator. 5. Deep breathing from the belly up through the stomach, up thru the throat, pushing my breath up to the top of my head and hold it. 5. Try tor relax between the shocks. 6. Sumtrpitian shot knocks them up within 10 mins if i have access to one.
im around 10 years now a patient of CH what helped me most are ergotamine which is also way more affordable that triptans, I also would love to know why 1 pill of triptan cost around 5 USD
I suffer and it's hell I would not wish on any one I'm on cocodamol now and it does nothing really
Hi im also starting having a cluster headache for about 3 days.How can i get rid of this pain?
I've been getting this annoying headache above my right eye side for about a week, I'm getting more paranoid
Please do a heavy metal detox to get rid of cluster headaches
I really wanna get raid of this somebody help me please this is torturing me for a long time please some one help me... I can't tolerate it anymore I feel like my right eye is bursting out.
Why doctor not working on this for prmanent
4 years in to my cluster headaches, here. No doctor will prescribe me a shotgun. Updates at 10.
Feel extremely sorry for this guy.
I suffer from exactly the same thing. (except I experience it far less often)
The anxiety alone is debilitating.
Can someone tell me how he improved it?
He mentioned 17 months without a full blown head ache. How? What changed?
Someone else in the comments mentioned psilocybin.
For me it feels like someone shoved a white hot ball of lead into my eye socket and it just starts trying to expand and burst out of my skull. 3/10 would not recommend.
I am 11 months in in what I think is my first cycle, man I can't work, 32 years! I need to work ☹️
i get 3 month cycles during which i am extremely run down / feels like auto immune disease.. is this common?
Please do a heavy metal detox to get rid of cluster headaches
"Cluster attack is not a headache"
Yeah it's true
The people who have cluster headache we need be together and connected like he said please if possible share your telegram id we can create a group shares our situation and tips
@@kurmana_sampath heya brother
My heart goes out to anyone living with this pain.
Heya can we chat about CH personlly
The pain is beyond earth. That's how I describe it. I think it has connection to the sun or possibly the galaxy. Jk. But that's only way I can think to describe it. Also because nothing works . But exercise and yoga help sometimes