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From: RiffRaffEsq
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  • Hello, watching your video brings back the all the pain & anguish I use to go through & I sure do feel for you. It’s devastating to have to live like that. I suffered for 20 years with the debilitating clusters before finding a natural remedy that actually took away the pain completely & stopped the clusters in their tracks. It’s been 8 yrs now & I am cluster free, thank God! I made a video that explains what has worked for me & hopefully it will for you too. Wishing you the very best, Andy

  • Nice head banging

  • good god this looks like a horrible thing to have! i feel greatly sorry for you and any other sufferers!

  • ... available at your place, but it helps a lot of people in Germany with this kind of desease.

    I hope you understood me, as I said before, my English is not the best :D

  • Hello, sorry for my bad English, I'm from Germany:

    My father has also cluster headache attacks and he is also chronic. Oxygen doesn't work for him anymore, but there is some other medicine that helps him. It contains one of the following: Lithium acetate or Lithium carbonate. He has to take pills with one of these every day since a year and it helps a lot. His last attack was 10 months ago.

    Before taking this medication he had attacks like you every day. I don't know if this medicine is ...

  • I suffer terrible, crippling pain with ibs and sometimes I feel suicidal, but this sounds much worse. I really feel for you.

  • are cluster headaches some kind of disease? or are they a sickness type thing where you can catch one?

  • I suffer from clusters too. I was just diagnosed last year and they seem to be getting worse with each new cycle. It is almost unbearable. I dread the next headache, I'm afraid to go to sleep. It sucks man. I'm really starting to worry about being able to maintain a normal life. Its nice to know that there are others out there and they have been able to manage. Nice song by the way. Reminds me of one of my favorite bands, Ministry. Good luck to you.

  • @filthyhands42 have dr give u prednizone it sops my CH along with a lot of hot showers1-6 times daily when my condition peake...hang in there i know how u feel!

  • I feel you, brother. Don't be a victim. Paul had a thorn in his flesh. Get O2 therapy and strive ever forward.

  • not funny! worst pain ever apparently. i was whining about my wisdom toothpain, ,but this shit is on some new level

  • Too much head banging from the look (and sound) of things :)

  • To anyone experiencing cluster headaches;

    There is a treatment with great success results, unfortunately it is illegal.

    LSD, Psilocybin (chemical in magic mushrooms) and other hallucinogens WORK.

    You don't even have to take a psychoactive amount! research it if you don't believe me.

  • I live with chronic headaches everyday for almost 6 years. Anytime I need to know that somebody has it worse than me, I watch these cluster headache videos. I feel so bad for these people and I'm inspired by their toughness. Simply unbelievable.

  • hello everyone. what do you all use against it? does something help?

    O2 deosn´t really help me. it makes it less horrible while breathing it but five minutes later the attack comes back.. or my head feels like mud until the next attack.

    cheers

  • my mum has cluster headaches, i cant bare watching her be in so much pain when i am around her, i always tell her to have the oxygen that is provided for her to use when she gets one of these headaches but she refuses to until it is unbearable because she says she is saving it for a worse one, they all seem the same to me. is their anyway i can help her because i hate seeing her like this, i know i cant cure it but is their another way i can help apart from telling her im here for her.?

  • I'd almost prefer my kip7 cluster headaches to your taste in music, lol =P

  • hi RiffRaff yeah i know where you're coming from there, i've been episodic for 28 years and only got a proper diagnosis 6 years ago. youve captured the feeling really well there. i can't help but empathise. have you tried sumatriptan injections as an abortive? for me they kill an attack in minites every time. they are aggresive though. i'm starting to use oxygen therapy now . all the best to you

  • i dont get it,why does this happen to you?ever tried LSD or medical mariujana?

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  • Diagnosed last year, after 25 years of 3 month clusters of 2 to 4 attacks a day, each one lasting 45 minutes. It is torture, capable of breaking you down; with the sleep deprivation and burden to family this relentless agony causes. When we gave up any hope of saviour from the torture it limited the impact the attacks have on our lives, my woman and kids go about their business when I have my attacks now, there is nothing they can do to help. Se la vie.

  • @TheRasibo oxygen at a high flow rate (25 litres per minutes) will abort a cluster very quickly if you catch it at onset, though it can take a bit longer for the CH's you wake up with. I STRONGLY encourage you to check into o2 therapy for your clusters.

  • @RiffRaffEsq Thank you, this sounds a lot safer than the Zomig nasal spray abortive my doctor gave me, to its credit it does what it says on the packet but also has a horrifying list of possible side effects that made me regret reading the instructions.

  • @RiffRaffEsq Thank you for the advice but mostly for the video; after all the years of suffering this condition without knowing what it was, your video was the best part of finally being diagnosed as I was able to show my family that we were not alone; they have seen me like this so many times.

  • @RiffRaffEsq I do 15 LPM usually works,they started me on 8 LPM ,didn't do squat.

  • @TheRasibo I am having an attack right now. Is there any medicaction who helps me?

  • @Melchersson Went on an American CH site and their doctors (who need to make themselves good value for money) are telling them to use coffee. It may just be a phase my condition has gone into but a couple of cups of coffee a day appears to have prevented this summer's cycle; it started as usual; on the 1st sunny day but coffee aborted those initial attacks and no more have come. Keeping my fingers crossed and enjoying my first summer in 25 years. Always avoided coffee at doctor's advice.

  • @TheRasibo Thanks for the advice! There is so many doctors with a lack of knowledge when it comes to these cluster headaches. They prescribed me all kind of painkillers who didnt help and just made me feel thousands of side-effects!

  • @Melchersson You are so right; doctors know so little about CH and are reluctant to diagnose CH because the possible side affects to the drugs are so bad, oxygen is expensive and we can need a lot more time off work than doctors are prepared to vouch for; I was a chef by trade and had to find alternate jobs that I could do through my three month cycle because doctors would never sign me off for more than six weeks.

  • @TheRasibo Its actually hard to believe that a doctor wouldn't sign you off for the whole three month cycle. I have less and less faith in the medical profession as I get older. If ever there was a condition that deserved complete and total sympathy from the doctors, CH is the one.  We should be fucking throwing money into research to find a cure for this.

  • @LadyCypher54 If this was America I would probably be able to sue somebody. Got my medical records to support a CV but each cycle was written up as stress and depression, so I don't even have that to show prospective employers why I have had to change job so often. Still pain free though so counting my blessings.

  • @TheRasibo Just thought I'd let you know; appears I was wrong about coffee curing my clusters; the pain I had was around the temple lobe but different; no droopy eye, runny feeling nose and the pain was not so intense. I have just been to a neurologist to finally get my clusters sorted but she says this condition that wakes me and is sorted with coffee is known as hypnic headaches. For the clusters we are looking at a programme of treatment with Verapamil at higher doses and oxygen

  • @TheRasibo You have my complete sympathy. Do you live in fear of these cluster headaches.  I'm sure you're aware of the work they have been doing with some derivative of LSD, right?

  • man that is some real accurate music you picked to paint a picture with mack

  • @jnny3000 Thanks. It was 'very inspired.' ;-)

  • The fact that you deal with these things and still have the motivation to live another day inspires me to be a better person. Thank you.

  • @asymptoticworkpiec YOU DON'T HAVE CLUSTERS - YOU HAVE WHAT IS KNOWN AS 'SPAMMING'!!!

    Tramadol doesn't do anything! for even a toothache you spammy twit.

    You need a clusterf**k to wipe out your entire computer system!

  • I can't stand to hear anybody say, I have cluster headaches. I had one all day yesterday and I just had one 2weeks ago. They shouldn't be called headaches at all. They are more like an unbelievable painfull seizure. My husband woke with one last night. It was his first one in 5years. Now it will hit 4 or 5 times a day for who knows how long. The first spell lasted 7 years. This is also very tuff on the sufferers family.

  • I get these damn things from Aug-Oct like clockwork now for the last 9 to 10 years...I wasn't even diagnosed until 4 years ago. It's Hell...I hate it when folks say, "It sounds like Allergies,"...they don't know what they are talking about.

    Anyway, brother, I feel for ya...I wouldn't wish these damn things on anyone.

  • nah it doesnt make u any slower...if anything it makes u smarter...smarter for not sitting in pain anymore n doing sumthin about it...its been 2 yrs now for me...no clusterheadaches n i had chronic severe ones...worst pain i get now is regular headache...its great...i got my life back...back in school back to the old me...just a different outlook on life

  • I have 3-8 attacks per day.I wonder how I'm still alive at this point.God Help Us!!

  • Where's your oxygen? If you can get it, it's amazing for aborting the beast.

  • dude, I FEEL your pain!!! When I was younger had migraines, and 'mild' cluster headaches...went down the rabbit hole before thanksgiving of this year--thought I was going to die--morphine didn't even touch the pain--only dilautin took it down to the barely tolerable--trigeminal neralgia--cluster headaches..hell on Earth..Myself--Crying out to God, holding on to His hand, got me thru..meds don't work...don't trust LSD, nor 'shrooms(I work in med field--that stuff scares me) I do feel your pain..

  • hey is specifically for trig neuralgia..but i kno 2 other ppl tht had it done, one had cluster headaches as i did, and my aunt had tmj..same surgergy worked for me and them..

  • Are you Gary? Lawrenceville,upstairs from you

  • No. Sorry. Wrong person.

  • Morning glory worked but made me almost vomit.

  • have you tried sumatriptan? me helps...

  • Yes, but it causes major rebound headaches. So far, o2 is THE BEST abortive for CH I ahev found.

  • have you tried using LSD or psilocybin to disprupt your cycles?

  • Psilocybin worked for me briefly, but it is very hard to come by and in my current living situation it is impossible to cultivate my own medicinal fungi. I am using R.C. seeds and so far they seem to be working to break the cycle. Last night was my first hit in awhile.

  • Have you guys tried tapping techniques like EFT on this?

  • I used ot get them very bad. I continue to get clusters a few times a year that last for about 5 weeks. but they are not nearly as bad. i have all the same symptoms (drooping eye, unilateral eye pain....) but they are not as horrible as i have had in the past. (middle of the night is the worst) has anyone else had these less harsh clusters?

  • My first couple of cycles weren't that bad. As I started getting older, each cycle was worse and worse until 1993 I went into cycle and thought I was going to die. Little did I know how much worse they would get, or that they would wipe out my life 3 times!

  • Aspirine against this kind of headache is like a glass wall against a shotgun. Useless!

    I recognize myself here... a bit too much.

    Something completely different: damn, I like your music! Where can I find more?

  • Man I feel you !!! : (  Thank you for not having a bright ass light like most of the other CH video I looked them up during an attack and it didnt help..I agree ice does help better than heat.

  • I usually use a heating pad on mine the second I feel it coming on. Just turn it on high and it works.

  • Not me. A heating pad is an absolute no-no, as it just adds to the searing pain.

    ICE is what you need my friend. Try putting a bag of frozen peas on the base of your skull during an attack and at points on your affected browbone. That does much more good than heat.

  • I had clusters for 27 years and then found out the reason for them, call me, my name is Robert M. Johnson, call me maybe I could help you for the doctors didn't find the reason, I did with Gods' help. My number is 843-323-2408

  • I'm glad your faith helped you, but if your reason for them is 'spiritual warfare' then you're barking up the wrong tree.

    I would prefer you post here what helped so that others can benefit from your info, if in fact it is beneficial. Sorry if I seem abrasive but I spent many years in the church and studying the bible only to find it to be nothing more than a system of control & hypocrisy.

  • I have been suffering with clusters for 18 years now... I have had times when it almost drug me down and times were I got a nice long break from it and started to imagine that I was free.

    I feel deeply for you my friend. I am so sorry we have this in common and I am so sorry you got hit with it so badly.

  • I'm sorry that anyone should ever know such a pain, and how it effects every aspect of your life. It ripped mine to shreds many times, and I missed great opportunities as a musician. Have had them 22 years now, being chronic since feb '98. I just embrace the time I am not in an attack, and that gets me through the next one. That and 25 lpm of pure o2!!!

    Oxygen is THE BEST combatant against clusters.

  • Have you tried Topamax yet? Im on it for my season May-sept. However I can't taste beer or soda while on it and they make ya kinda loopy at first but they work.

  • Dopey-Max. Ah yes, the "I can't remember half of what I used to" drug that was otherwise a placebo.

  • Omg...you poor thing....

    My heart goes out to you...and I hope they find a cure soon! :(

  • I suffered for 5yrs everyday..surgery called microvascular decompressionof the trigeminal nerve..find a good doc n get it..5long yrs..and I'm virtually pain free

  • Now, was it specifially for clusters or for Trigeminal Neuralgia? Because I have been asking about this surgery for awhile and if I can get it, I am considering this option.

  • trig neuralgia, but workeds for cluster too, cuz its thje same nerve being affected.

  • @rfliip09

    I am contemplating the surgery at this point.Does it make you slower ,mentallY?Anything is better than the PAIN!!!!!!!!!

  • Have you tried sumatriptan injections for acute treatment and also Verapamil for prevention? It is probably silly to ask as i am sure you have. Good luck fella.

  • Sumatriptan (Imitrex) just perpepuates attacks. It might abort one, but then cause a mega rebound that doesn't abort. My best friend is my o2 tank when it comes to aborting the Clusters. Already on Verapamil, and take Frova tabs when necessary. No pain meds touch a cluster, but oxygen does.

  • But it works well for some people doesn't it? Presumably the Verapamil has cut down the number. Did you inherit the condition, it looks bloody awful. I get migraine with aura, so not quite the same but the pain of a bad attack can still be very disabling.

  • I am glad to hear someone else talk about imitrex rebounds. The first time I injected Imitrex it really seemed to work, but the next morning, I got the worst attack I had ever had completely off my regular schedule. Getting my bad attacks at 1-3 in the morning and much more mild attacks at 2-4pm that I could sometimes work through or go hide during the peak each day was the only thing that kept me working during those years. Imitrex rebounds would have made work impossible.

  • i know that feeling exactly man, really. i too suffer from CH and when i went to hawaii and went up this 11 thou ft volcanoe.. it was hell on earth. i first got altitude sickness, pretty sure it just triggered a bad CH though. i let them think whatever they want noone knows this pain unless they have been through it a hundred times and had no promise of remission. i have gone about a solid month without any remission what so ever. maybe a couple days pain free.even then there is some pain hiddn

  • Dude, I really feel for you. I suffer from Cluster Headaches too and am going thourgh one of my cycles now. Last night I had three attacks two hours apart followed by a two hour attack. I get them for about a month every few years. To think you are chronic is so sad. No one can understand the pain and isolation these attacks cause. The take you to insanity. My life is ruined during a cycle.

  • Have you tried doing push ups?

    Hope you find something that works for you.

  • lol im with granaat010, that fuckin music wont help at all!!

    but in all seriousness.. i hope they stop for you.

  • I get headaches all the time, like right now i have a real mild one, but ive had suicide headaches like so bad that I had to go into a completly dark room and have no noise around me whatsoever. Some people recomended walking, running, or taking a shower or whatever, but its always temp and i always had a huge crash after the temp releif. The only way i avoid it is if i feel even a mild ache I hurry and take lots of asprin, drink lots of water and relax in the dark.

  • i certainly feel your pain man. i am just starting a bout of clusters after 3 years of being free of em. i forgot how much they hurt. i get the 'it's just a headache' thing all the time and it's not nice. the only person that understands is my girlfriend. who finds it hard to see me in pain.

  • Oh my dear god...why did u edit it with the fucked up crazy music!

  • @granaat010 maybe because that's how it feels like?

  • @granaat010  Because Clusters Headaches are f*@ked up and crazy to try and live with. I wrote and recorded the song in 3 1/2 hours time, and it is ABOUT the frustration of living with CH on a daily basis. What did you expect, a lullabye?

  • @RiffRaffEsq Hell yea!!!! I make music as well. I understand this. I have been o.k. for a couple years now but there is always the fear and the bad memories and all that has been taken away from me. Only the strong will survive this. Keep on keeping on man!!!

  • Then you obviously don't have clusters. If you did, you wouldn't be making asinine comments like "so called".

  • jon benjamin?????

  • hi, i quit smoking and drinking and have been pain free ever since but it's only been two and a half years so i am not that sure. everytime i feel even a slight pain i start to freak out and stock up on prednisone and verapamil, the 2 most effective so far. hope you find your remedy soon.

    btw, awesome music choice :/

  • I heard about all those before, and they got it again, it just takes longer to return.

    But Good Look 2 U , I am on a yearly base now, and no, I can't quit smoking while I have an episode. Maybe I can manage not smoking between those episodes, but I am a smoker again, while having an episode.

  • prednisone is a steroid which is used to treat trigeminal neuralgia, i was wrongly diagnosed with that for a year and half getting fat and weakening bones with perdnisone before finding out its cluster headaches.. now im on 160mg verapamil 3times a day and 15 lpm of oxygen whenever i get an attack which works very well, plus for the odd real unbareable ones where death seems the only option.. imigran injections releave the pain in 5-10 seconds.

  • There is a new post from the Spaniard on clusterheadaches(dot)com. He claims relief by raising the arms above the head and pumping the fists. Check it out!

  • wow i am so sorry for you and all those who suffer from CH and migraines. Ive been getting them since I was about 8, i am 22...my right centered pain is so excruciating i end up in the hospital...no medicine, and i mean nothing, works once the pain has progressed. soooo good luck!! hope we all grow out of it soon

  • Tell your doctor you'd like to try oxygen therapy. It is one of the best ways to wipe out a cluster. I know it may sound crazy, but o2 at a high flow rate for about 15 minutes will knock most attacks out.

  • ive read about LSD-25 or psibolyn containing mushrooms being very effective for these headaches

  • i have also read this

  • I have been CH free for 4 years. They disappeared overnight following the extraction of 2 lower wisdom teeth under a general anaesthetic. Not certain if it was the novocain in the GA,but they have not returned. I understand the severity of pain caused by cluster headaches.Best wishes.

  • O.K...so I have had episodic clusters for 15 years now and was finally diagnosed last week. Four different doctors including TMJ, and a chiropractor. I thought they were all helping because I kept going into remission. I FEEL YOUR PAIN!! Im now on Topopmax and Im not sure if its helping. My headaches are less frequent but are still occurring. any advice?!! Have you tried Topomax?

  • oh man i havent had a headache that painful, well ill pray for you so u can feel better, take vicodin have u tried it?

  • Vicodin is futile against CH. In fact, I tried Stadol Nasal Spray years ago and it doped me up so much I was drooling - but the pain shot right through it. Pain meds don't touch CH. The only two things that work against a CH is oxygen at 15 lpm for 10-20 minutes, and if it is too bad (waking up with level 7 or more) I chew a Frova tab and huff oxygen. o2 has been a godsend in that, if I feel the prssure building, I nip it in the bud pretty quick with o2.

  • hmm well im 19 but i dont feel a headache that bad just like pressure feeling in back of the head when i try to workout, but when im calm and not doing anything i cant notice it, i hope you feel better, i think i may suffer from migraines or exertion headaches

  • I'm an episodic sufferer, currently in the middle of a cycle. I was just curious, have you had any luck with imitrex sub-q?

  • Imitrex seemed to perpetuate the attacks. I got hit with alot of rebounds. That was why I tried Frova tabs. They take longer to kick in, but usually when they work, I go longer in between attacks. Imitrex takes it away faster, but the next attack is always twice as strong and the trex won't touch it. Right now, Frova, Verapamil and o2 therapy are getting me some much needed relief, but still getting hit.

  • I take 900mg of gabapentin twice a day and it has helped tremendously. I still get them at least once a month but nowhere near as bad.

  • For the last 3 or 4 months, oxygen has been my best friend, as it eliminates most of the attackes if I can catch them when they first start, but when I wake with one (or if I get a typical migraine) I always take Frova. It takes long to abort a CH, but causes much less rebound than Imitrex. I found out today, my insurance changed and Frova is no longer covered. 18 pills cost 300 someodd dollars, so now I have to have my primary doc write a letter of medical necessity to the state.

  • I have had clusters for around 17yrs. Imtrex helps 90% of the time. A few thing that help them not come on as frequent is 1. STOP smoking, 2. Stop drinking. 3. Exercise. There are so many things ive tried to keep them at bay, prednasone, verlapamil, topamax....it goes on and on. But life style changes seem to help the most and is the most least expensive. I also try to keep my house clean, keep your dust and mold down to nothing. I hope this helps...you have probly heard it all before.

  • I quit drinking as of Halloween, and my old doc had me so screwed up with my meds that this past summer I had what is called "Serotonin Syndrome" caused by mixing Cymbalta with Triptans. One more month on Cymbalta and I wouldn't be here now.

  • this shit is scary i feel bad i hate seeing ppl suffer

  • I meant to say "13 years OF suffering" not OFF. (How great that would be)

  • 13 years off chronic suffering. Just recently found out about the Triptan though. I give myself a shot in the thigh at the onset of my headaches. You can feel it working in about 20-30 seconds, then within the next 2-3 minutes, it's gone. I truely thank God for Sumatriptan... It is LITERALLY a life saver!

  • Dude. Try Sinus Buster headache formula. Helps most cluster headaches..

  • Sorry to see you go through this. I suffer from the same affliction. Mine start in the back like yours, then go to the temple, then over my eye. If I could take your pain away I would

  • I'm having a cluster headache right now...my recomendation...why the hell are you listening to this kinda music when you're having an attack...god help me when is the sumatriptan gonna kick in...

  • Um, at the time of the attack, there was no music on. I later put this song onto the video because I wrote this song out of frustration from my first couple of years chronic. The song is called "Within" and was very inspired. That is why I put it on this video.

    I must say Hairy, for you to claim to have typed this response while having a cluster attack, you type very well and focused for me to quesion YOU.

  • I just finished aborting my cluster attack. Step 1 take sumatriptan 100mg. Step 2 start weightlifting till your muscles fatigue with the window open (cold breeze). Step 3 go for a jog to 7 11 and buy a slurpee, drink as fast as you can to get brainfreeze.

  • Having a cluster attack you have to be focussed on relieving the pain instead of letting the pain rule you. That's what I'm figuring out.

  • 8 yrs. cronic sufferer

  • this is hard to watch..I suffer from from C.H. those bitches can ruin your life. I know his pain.... but mine goes away for a few years... Much love to the tough basatard.. Life in pain SUCKS.. hope you get some sleep soon Mack.

  • So I guess you belong on disability with plenty of heo.

  • I have had this condition close to 30 years now and have NEVER held my neck.How come i dont see you covering your eye,your technique is odd.hmmmmm.

  • Next month will mark 20 years with clusters, and yes, my technique is a bit odd. I don't put pressure on my temple or eye, because I figured out a long time ago that the vessels are expanding, and to put more pressure on it just adds to the pressure. I push into my jawline and also into my neck to try and cut down on the blood rushing too hard into the vessels. There is already too much pressure on the head, I am trying to lessen it in my temple and eye.

  • hi 25 years i have it now , both sides, i do the same as you with mild ones and at seems to help a little bit

  • What would anyone have to gain by posting a video on youtube of themself faking a cluster headache? Why so suspicious?

  • Technique is odd? Focus on relieving the pain? Lol...

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