Cluster headaches 

Introduction 

Pain

What to do about different types of pain, including joint pain, back pain and migraines, and managing long-term pain

Cluster headaches are excruciating attacks of pain in one side of the head, often felt behind the eye.

Sufferers often call them 'suicidal headaches' because they're so severe.

Cluster headache attacks

Cluster headaches begin unexpectedly. They're much more painful than migraines or any other type of headache.

They're called cluster headaches because sufferers usually get one to three of these attacks every day, for several weeks or months, before they subside. A pain-free period will follow, which sometimes lasts months or years, before the headache attacks start again.

Because of the intensity of the pain, some people will pace the room, rock, or bang their head against the wall out of frustration, restlessness and despair.

Read more about the symptoms of cluster headaches.

Types of cluster headache

There are two types of cluster headache, episodic or chronic (long-term).

  • episodic – headache clusters are separated by headache-free periods of one month or more
  • chronic – headache clusters are separated by headache-free periods of less than one month, or are not separated at all

About 10% of cluster headache cases are chronic.

Causes of cluster headaches

Research suggests that when a cluster headache happens, there's a lot more activity in an area of the brain called the hypothalamus. It's thought the hypothalamus releases chemicals that trigger the cluster headaches, possibly by causing blood vessels to widen, causing an increase in bloodflow to the brain.

It's not known what causes the hypothalamus to act in this way. However, in some people, cluster headaches are triggered by certain things, such as:

  • drinking alcohol during the period that headaches occur – during headache-free periods, alcohol doesn't appear to trigger attacks
  • an extreme increase in temperature (such as from exercising in hot weather)
  • taking inhaled nitroglycerin a medication that causes the blood vessels to enlarge

They are also more common in autumn and spring.

Who is affected

Cluster headaches are rare and affect around one in 1,000 people. Anyone can be affected, but approximately eight out of 10 people who have them are men and most are smokers.

Treatment and support

Cluster headaches can severely affect quality of life, so it's important that sufferers are referred to a specialist clinic for treatments to relieve and prevent the attacks.

Organisations such as Ouch UK and the Worldwide Cluster Headache Support Group offer advice and support.

Although cluster headaches can cause great suffering, they're not life-threatening. They can often be relieved with a medication called sumatriptan or with oxygen therapy. In some cases, preventative treatment may also be necessary.

Read more information about treating cluster headaches.

These treatments may vary in effectiveness from person to person. A few treatments may need to be tried before the attacks are under control.




Page last reviewed: 11/04/2013

Next review due: 11/04/2015

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Comments

The 56 comments posted are personal views. Any information they give has not been checked and may not be accurate.

hellsbel said on 12 June 2014

I was recently diagnosed with CH after being treated for sinusitis wrongly for the last 6 years I am a staff nurse working in an acute NHS trust the pain I have been suffering has been quite literally indescribable, like many of the commentators noted the lack of understanding and empathy regarding absence due to CH is incredible and I was seen by a neurologist from my trust and work with health professionals who should know better, I hope my next episode is successfully treated by the sumatriptan sub cut injections and prednisilone I have been been prescribed or I could lose my job. I encourage anyone with the symptoms described to encourage their GP to refer them to a neurologist as seeking advice from a specialist has proven invaluable.

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atone1 said on 02 June 2014

Have had ch for some 20 years now and have found zolmitriptan helpful but with limitations. My GP also has me on verapermil during a cluster to try and break the cycle which has helped once or twice.
am in the middle of a cluster right now which has so far lasted 3 months the verapermil has been increased to a very high level and seems to be starting to work at a cost of swollen legs and ankles severe muscle pain and a few other side effects.
My worst session was 10 months non stop at approx 3 a day which is when I tried the verapermil for the first time.
It seems that some things work for some and not for others so its a lottery all I hope is that some of you win this lottery.
Good luck to all of you.

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023mjc said on 26 April 2014

After many years I have got this thing under control.

Sumatriptan auto injections will abort the worst CH in less than 10 mins. The pills take too long to get in your system, but the auto injections are brilliant.
High flow oxygen will do the same if used properly. You must have a flow rate of at least 15 litres per minute or more, and a non-rebreather mask. If you get either of those wrong it won't work. Get it right and you will wonder how you ever survived without it.
Good luck.

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k e z z a said on 25 March 2014

I am male, 44 and a smoker. I have stopped smoking in the past but this did not stop my CH attacks.
I have suffered from CH for over 20 years, and I have tried everything. From acupuncture to injections. And I'm sorry to say nothing gets rid of them. The cycle lasts from 3 weeks to 4 months, and I have all the usual symptoms: terrible pain on one side of my head, blocked nose, aching teeth, weeping eye, hot sweats etc.
I can only sit up in bed in a dark room, and wait for it to stop: usually within an hour or so. I am then so exhausted I can only sleep. Unfortunately, the CH is usually still there when I awake and then I'm back to square one again.
I am currently taking Epilim but I honestly don't think it helps. I just have to wait for the cycle to end. My thoughts go out to you all, I know how you feel.

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User849094 said on 25 February 2014

After suffering from very bad cluster headaches for a very long period I was desperate to find a cure. So after searching the internet for a long while I come across that Magnesium helps with the headaches in tablet form.... and I find that it is really helping....

I have read some of your comments and hope it also works for some of you :)

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Princessem84 said on 25 February 2014

I was just wondering how everyone got a definitive diagnosis.
I've had MRI scans and spinal taps but all can't bk clear but every few months I get these agonising headaches that can last a few weeks at a time. I can't really function with them and have to wear my sunglasses even indoors as the light makes it 100x worse. The drs have said they don't no what it is but this describes exactly how they are

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Harriigwen said on 29 December 2013

Hi everyone..I'm harri 18 years old.I've had these for the past 5 years now and there's no stopping them from going away I wish I had a break from them...about 6 months into them I went to my doctors they gave me paracetamol and sleeping tablets nothing has them so I stopped taking them, I also had a mri scan done on my head and nothing was found but what this page is saying I feel this is the closest I will get to knowing what I have. and when I get a really bad one I have to go sleep, I could sleep for days, I feel dizzy and sometimes I can't stand up cause my feet and legs feel like they are going to cave in. so I was wounding if anyone had felt that this.. Thank you for you time in reading this xo

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Mcmak said on 13 December 2013

Hi all.. I am from Malaysia.. I have been suffering from cluster headache for the past 9 years. Went to a lot of clinics and hospital only to realize I have this headache called cluster headache.

But I have recently met a doctor here locally who practices acupuncture. I told him that I have this headache and to my surprise. After one session of treatment. I am now 90% recovered.

The reason I am sharing this is because I know exactly how it feels when the attack occur. I don't know if the treatment work for you.

All the best guys and good luck to all of you. Please note there is no medication required but of cause you will need to suffer for 10-15 minutes for the acupuncture. I rather exchange my 10-15 minutes with a long lasting pain of 9 years.

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Julian Parge said on 10 October 2013

Hello, I'm 26 and I've been suffering from trigeminal autonomic cephalalgia which includes weekly cluster headaches and SUNCT. I've had this for almost 2 years now. In that time I've seen 2 neurologists, have had 2 MRI scans and I am about to enroll onto a clinical trial.

So far the best preventative treatment has been sodium valporate and verapamil for the cluster headaches, greatly reducing the pain and frequency. As an abortive treatment, nothing seems to be better than subcutaneous sumatriptan. I also take methylprednisolone for SUNCT, which is extremely helpful.

I've tried gabapentin and carbamazepine in the past but both of these needed (for me) to be at extremely high doses to make any difference.

I sympathise with anyone who has this and wish you all the very best of luck with treatment.

I only get the attacks once a week or so, so not as much as some of you, but the ones I do get are bad enough to make life difficult.

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lrachal1987 said on 17 June 2013

i am 26 and have been having these headaches since age 9. they are so severe behind my left eye only that i cannot function, the pain is excrutiating. ive had cat scans,spinal tap,mri, been to an optometrist an opthomologist, and still have no answers as to what this is, i have researche for years, and cluster headache seems to be the closest thing to match my symptoms?

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Frankov said on 24 March 2013

rosalin on 31 January 2013
Hi Rosaline, not to minimise your pain, but if it was an episode of cluster headaches you would most certainly know, as there is no pain like it on earth, and so would a few others from the groans and crying, rocking and writhing that often accompanies the pain. I can only describe it as the sensation of a blunt rusty cork screw being drilled in from the crown of your head, going passed the back of your eye ball, through your sinus had hitting the top of your incisor tooth. If you do have it then my heart goes out to you.

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mustajabak said on 18 March 2013

Hay 023mjc
Glad to hear that this thing did not show its ugly face to you again and am wishing that it will forget the way to your brain for ever.
Thanks Buddy
Lets hope that this ___ CH may not show its ugly face to all of we who are the victims of this dirty pain.
Wish you and all other sufferers a wonderful and pain free life ahead
Take care and God Bless all

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023mjc said on 15 March 2013

Thanks MUSTAJABAK for your kind thoughts. I have had no pain now for 48 hours, so mabe this episode is over - till the next time. Each episode lasts about 4 to 5 weeks and I have 2 a year, but they don't seem to be tied in to the seasons at all.
It all seemed pretty bleak untill I got the sumatriptan injections. I know I will always get these awful pains, but it's such a relief to know there is something that takes the pain away.Are you in the USA. Don't know if it's available there but may be worth asking. I'm in England.
My thoughts and prayers will be with you from may to august. Please continue to be brave, and take care.

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mustajabak said on 12 March 2013

Hay 023mjc
Man what to say other than May God give you the courage to handle this ________ pain
I am suffering since 1995 till date. Man every year during the months of May to August, life is a living hell.
Please let me know when your cycle ends as it will make me feel good that one of us (sufferer) went through the cycle with dignity and he is in ONE piece ha ha ha
I'll pray for a quick end and stay end forever
Luv u
Take care

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023mjc said on 24 February 2013

Have just used my first 2 sumatriptan injections. One yesterday and one today, both at the beginning of an attack. And they worked!!!
I was a bit scared of injecting myself at first, but in so much pain I would have tried anything, and it wasn't too bad.
Of all the medications that have been prescribed for me over the 5 years I've suffered from CH, this is the only relief I've ever had.
I was only given 2 to try out, so off to the docs tomorrow to get some more.

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mustajabak said on 21 February 2013

Hi there
I am Mustajab Ahmed Khan
I got this Da---n disease called Cluster Headache while I was studying for my Ph.D. studies in USA and had a car accident.
man only who suffer from this pain know what pain is and other can not really understand the magnitude of restlessness-pain. I really feel like wanting to kill myself
I am suffering from this evil since 1995 till date and it didn't come for two years during this period of 17-18 years.
Once dr. gave me pentazocine injection that worked quickely and pain disappeared within minutes. My life changed and \i used to wait for it to come as I knew the answer to the problem. This pentazocine injection worked for 3 years and after that it also quit working as my body got used to of the medicine and quit responding. I am still having the same problem and also got addicted to pentazocine and am having 6-10 ampules of this injection every day and can not quit taking injections.
Man life is a mess and don;t know what to do,
Dr. in USA told me that I have to live with it fro the rest of my life. Cummooooooooon dear, It is easy to say that live with it but really really living with it is like killing yourself with no hope of being dead.
Well what to say other than All we who are the victim of this disease are very very brave people (forcefully with no choice to escape)
Please do not take pentazocine as it quits working after some years and you will get addicted to the injections .
If anyone finds anything else please let me know.
Best of luck Y'all and lots of love for the victims and pray fro teh solution in near future

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john ch sufferer said on 20 February 2013

going through mine right now into my 5th week. 2 weeks to go feels like forever kinda getting to me now got to be strong cant work cant think those of us who have this awful pain can never get through to those who dont. they cant imagine the hell we go through .

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mustajabak said on 19 February 2013

I had a car accident in USA while studying for my Ph.D. Studies and than I had this so called cluster headache which is fro sure a suicide headache as it really feels like killing yourself to ease the pain. Man the pain is very very I don't know what to say
After suffering for 7 years once Dr gave me Pentazoccine injection and man it was like a magic. the pain disappeared in minutes and I was like I am the happiest person on earth.
The injections worked for some 4-5 years and than they quit working as my body was adjusted with the injections. The dose started increasing from one ampule to 2, 3, 4, 5 and than even five ampules didn't work. Now the pain is still there and I am habitual with the drug and can not live without it. I am trying to quit the injections but so far no success. I am having 5-10 ampules per day for the last 7 years and the pain comes every year from May to August.
Still hoping someday someone will find some cure for the problem. Please somebody someone tell me what to do
This pain kills me like anything.

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Colin1878 said on 18 February 2013

Had first headache in 1998 and treated it as migraine. Around 2005 went to see a neurologist and had scans . He was impressed that my gp eventually seen it as cluster headaches and was given verapamil along with steroids. It was explained to me that verapamil is a heart drug and its use is to open the arteries to allow blood flow. The headaches occur when there is restricted blood flow, however, no-one can say why this occurs.
You do get fed up though with people saying its caused by stress. Over the years I have had these headaches during stress free times, although isn't everyday stressful now!
Had cluster headaches now on and off but not had any for a couple of years thankfully but last week it raised its ugly head again. Says something about it coming at the approach of spring? Now been prescribed sumatriptan and because you know when it's about to start you can take it early enough to try to stop it lasting too long and generally lasts 40 mins. But only able to take 3 tablets a day isn't helping when you get to 4/5/6 a day. And when they become stronger ......
My main problem is work, relatively stress free but uncaring management,try to educate them but still think you are pulling the wool. Would love them to have this for one day to change their outlook.
Anyway good luck to us all and remember, for me anyway, lasts a couple of weeks and then wait for the return.

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sm1973 said on 05 February 2013

hi ive had cluster headaches since april 2012 to be fair the doctor diagnosed it straight away i was given antidepressants which did help but the side effects wasnt good. im now waiting for a ct scan as they have intensified in pain as if they are not painful enough. my headaches can last all day without a break and this can carry on for a couple of days without a break my heart goes out to all of us who suffer. ive now been given new tablets hopefully they will work as dont know how much more i can take

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rosalin said on 31 January 2013

I am 14 and have had really bad constant headaches from half way through september until the end of november. I visited my doctor and was perscribed ibuprofen. When I had finished them, I went back as they hadn't been working, only this time it was a different doctor. Only this one told me to see my optitions as I need glasses for seeing things clearer when I need them. They also told me to write down when it got worse. I did both things and my optition said it had nothing to do with my eyes. A week later I was sick, then the headache stopped about a week after that. I thought it had gone until recently when they started again. Have I got cluster headaches as I'm unsure. I thought that I could have just got used to them but now after reading this I don't think I have. I don't know what to do, if I should go back to doctors or go to hospital or just live with the pain without knowing for sure?

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scarletpimperdot said on 06 January 2013

i know they say these are not life threatening but i am also a chronic asthmatic try the two together seems pretty life threatening to me, i honestly feel for all who suffer from this and hope for myself and all of you they find something to help soon x

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scarletpimperdot said on 06 January 2013

i have had cluster headaches for years my doctor thinks codydramol is good but this does nothing i have had them for as long as i can remember they come on for months and then i will get a year free of them and all of a sudden they are back again, i had my canine teeth removed to ease the pain as it goes down one side and into my teeth i do get them on both sides but never together i am female and a non smoker although i did use to smoke years ago, once i went to intensive care to visit someone when i got an attack and they wanted to put me in the bed next to him as i looked so ill, i have stood in cold shower for an hour to ease pain i have walked in circles on a cold floor for hour or so i have done the rocking thing but there is nothing that helps getting a referal for this took me ages and that was worse that useless all i know is i have had 4 children 3 with no pain relief what soever and i can say that these head pains are far worse as they come and then go for an hour may be and then are back like i said i am having a free time at the mo get the odd migrane nut they are nothing in comparrison the longer this free time lasts the better lol one more thing this makes me cry but the pain is so bad i try not to as crying makes it worse

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pharmacist and Ph D student said on 30 December 2012

hi i am pharmacist. my husband had cluster headache and a neurologist here diagnosed the disorder immediately. now he has the disorder under control by a drug named verapamil. however, the sustained release form of this drug is not available here but i think this form of drug even will be better because it can be take once daily with the same effects. now his attacks decreased significantly .at the beginning of the attack he also takes a drug named sumatriptan, it reveals the pain immediately.
Iboprofen,paracetamol,asprine and other drugs in this category do no t have any effect in this kind of headache.
hope i could help.

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slinky78 said on 26 December 2012

Pleas join us at "the cluster headache support group" on facebook to meet other sufferers and get help and support

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slinky78 said on 26 December 2012

can i just say for great support and help with other cluster headache sufferers please join https://www.facebook.com/groups/CHSupport/

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levi1989 said on 15 December 2012

Hi iam Levi aged 23 and i have suffered with cluster headaches on and off for about a year, but only just been diagnosed with cluster headaches a week today. It took over a year and 2 different doctor GPs to find out what I had. Well any way now I know what I have got my doctor prescribed me with 3 different drugs which are gambapentin, ibuphren and an injection what takes effect in less then 10 min called Sumatriptan injection. This injection is brilliant and its dead good. It only hurts like a minute, I say about the same amount of time as you getting bloods done at your doctors. It does leave a bruise and it does come with side effects. Well this is what i take....

Gabapentin 1 in the morning 1 in the afternoon and 2 before bed

ibupurfen 3 times a day when I take my Gabapentin

Sumatriptan injection when ever the headaches accrue this does come in a small neat plastic box so you can have it in your handbag and no one ca tell what it is because it looks like a small box what you have like loose change in

I hope this help guys and I hope you become pain free and get better soon and god bless you all I know what your going through so your not alone.

Any questions about anything what so ever just ask me and i will be more than happy to help

P.S when you do have the cluster headache don't sleep on the side its on it will only make it worse

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DannyBraithwaite said on 06 December 2012

I my names danny and im 24 I have being suffering with cluster pains for 8 years now I'm not exactly sure what triggers them but I find heat seems to relieve a little bit. I get them every year lasting from end of October to February usually 1 but sometimes 2 a day lasting 50 mins but sometimes 1 hour and a half, lately they are starting in my sleep usually between 4 and 6am waking up with a freezing cold forehead but sweating like crazy feeling like I want stab something in my head!!!... I generally drink a cup of tea or something hot to calm it down and really rap up to try get warm hot bath is sometimes good just as you feel it starting.... I also suffer once a year with like a stroke go numb from head to waist only on my left side the same side as my clusters immediately go to hospital symptoms start with blind eye then feel the numbing taking over your body losing your memory and speech lasting couple of days then a migraine and throwing up the migraine is kind of a relief headache for all you sufferers who no nothing can compare to these pains there unbearable!!!... If anyone has had these stroke like symptoms please contact me and let me know what cures them as I have had 4 now... Doctors seem to be useless at helping lol!!! I am on sumatriptan nasal at the moment but doesn't seem to have any effect. Is there any herbal or any other meds or ways to control them?. I just want rid of these pains its destroying my life!

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023mjc said on 14 November 2012

Thank God I have found this forum. I was beginning to think I was alone.
I too have been misdiagnosed and sent home with the wrong medication so many times.
I think most GP's don't even know the condition exists. I have been told to take an extra tablet, go to bed with a couple of paracetemol, get my eyes tested and my teeth checked, try yoga etc. The trouble is my pains are usually about an hour apart and coincidentally no doctor has ever seen me while I am actually having one. If they had they would not be so quick to dismiss it as a headache.
One GP told me that it costs £200 to make a referral so lets wait and see. It's a lot of money for a head ache.
One saturday (week end - so none of my regular GP's were around) I had 15 hours of continual pain without the usual break between them. I know I had overdosed on the contents of my medicine cabinate but by then I didn't care. I seriously contemplated taking the lot all at once to put an end to it. I fully understand the desperation of those that do.
No one else understands though. GP's look bored and my friends roll thier eyes - "she's having one of her headaches"
Only one GP really listened, and she diagnosed trigeminal neuralgia. Although the symptoms are extremely similar, it was the wrong diagnosis, but at least she put me on the right road, made a referral to a pain clinic and they referred me to a neurosurgeon, who diagnosed cluster headaches (migraineous neuralgia). The process has taken 5 years.
I have sumatriptan tablets now but as I am having a pain free time at the moment they are , as yet, untried.
Every one here has said the injections are good, but has any one had the tablets? Can you tell me if they are as good?
I wish you all well.

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Dduarte said on 12 November 2012

I am 30 years old. I had CH for almost a year now. I am following treatment with Verapamil and Oxygen at home with the doses of Imigran 20mg.

Nothing seems to work for the pain. I avoid going to bed, normally I only get around 5hs sleep. It wakes me up at night, I started with around 8 attacks a day, they last almost 2 hours, seems that most of the day is just pain and more pain.

I had to be hospitalised few times, they can't do anything for me, except more oxygen.

I am getting to a point where I can't focus or find a way to deal with my everyday life. I have no social life any more, I don't go out because I am afraid as more than one time I had a sudden attack on the street and was left blind and I passed out.

Something else I notice is that is very difficult to control this urges to run to the toilet, and nausea...

I am also getting depress because of this, people don't understand that is not just a headache. They think I am lazy because I have no energy for anything, I can't function and I keep getting in arguments with people that even dispute my sanity or tell me I am overeating, even after being diagnosed.

Doctors don't seem to get it either. It's weird but I find consolation reading about other people going through the same situation.

So thank you for writing...

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RavenBoldie said on 22 October 2012

I have suffered this awful disease now for 23yrs. Attempted suicide now 3 times and now at a point where it is now Chronic and truly unbearable. Life seems pointless as my career has taken a plunge and cannot do the things in life that most people take for granted, I can't plan anything and the disease has somewhat changed in me for the past three yrs. it seems now I have no control of my bladder and bowls as an attack is about to start. I dare not sleep as I always get an attack within mins of falling asleep, just to terrified to even think about sleeping. I try and stay awake as long as possible, sometimes a whole week before my body gives in with exhaustion then BANG, it's there and I curse myself for falling asleep...It seems nowadays that even in the day it's just as frequent. I have up to 28 attacks a day.....I take Imigran injections but can only have two in 24hrs, that's all the Drs will prescribe me. Tried all the other medications but to no avail, nothing else works. Very few Drs understand how it affects my life, even the weight I lose through not eating, the lethargy etc etc....How can people take this disease seriously with a name like Cluster Headaches....People just think its a migraine or simple headache and never understand, even my own parents think the same....The name needs to be changed, I seriously think this will help...Take the point it's "not life threatening" but in its own way it is. People do take there own lives to escape this awful pain..I have lost faith in all the Drs and Consultants, all I get told is there is nothing more "we" can do so I have reached the point now that...well, what's the point, can I make it through, struggle life like this....Somehow I do. I owe my life to Imigran as it's the only thing that's kept me alive...God bless the few people who suffer this awful, debilitating disease....WE truly are very brave people.

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mjstokie said on 05 September 2012

I suffered from ch for 30 years until diagnosed 4 years ago. I was prescribed Verapamil backed up by sumatriptan injections when needed. Once the effective dosage of Verapamil was found which only took about 8 weeks I no longer needed the injections and have not had one headache now for 4 years.

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Nick W said on 24 July 2012

Your message was:
Speaking of caffeine as someone was, I was told by a neurosurgeon to stop caffeine all together so now I drink Red Bush tea which is naturally totally caffeine free.

Anyway, I have had CH since 2006 and been battling with my GP for the correct medicine since. He has virtually told me it is down to cost but with this bout I have demanded the Imigran injections and it has changed my life. My record for a CH is 16 hours and that was the worst day of my life, I cried like a baby for it to stop. Now with the injections it takes 4 to 5 minutes and it has completely gone. Sometimes I wait a while and make sure the headache developes before I use an injection, even in full flow it only takes around 7 minutes to go. The price for a refill with 2 injections is just over £40 so it is expensive but I pay my tax and I am going make sure I get the medicine I need.

So if you have CH and are struggling to find a solution ask your Dr for the injections and I am pretty sure it will change your life. I know it sounds like it but I don't work for Glaxo, its just that this medicine for me is life changing.

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Nick W said on 24 July 2012

Speaking of caffeine as someone was, I was told by a neurosurgeon to stop caffeine all together so now I drink Red Bush tea which is naturally totally caffeine free.

Anyway, I have had CH since 2006 and been battling with my GP for the correct medicine since. He has virtually told me it is down to cost but with this bout I have demanded the Imigran injections and it has changed my life. My record for a CH is 16 hours and that was the worst day of my life, I cried like a baby for it to stop. Now with the injections it takes 4 to 5 minutes and it has completely gone. Sometimes I wait a while and make sure the headache developes before I use an injection, even in full flow it only takes around 7 minutes to go. The price for a refill with 2 injections is just over £40 so it is expensive but I pay my tax and I am going make sure I get the medicine I need.

So if you have CH and are struggling to find a solution ask your Dr for the injections and I am pretty sure it will change your life. I know it sounds like it but I don't work for a medical company, its just that this medicine for me is life changing.

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Gups said on 13 June 2012

I have suffered from this debilitating condition for many years now. In fact the condition was not even diagnosed for almost a decade. However, thank goodness I am an episodic rather than chronic sufferer
I can certainly sympathise with all of the comments made here relating to the pain, lack of treatment, difficulty with work, etc. etc.
Whilst not a cure, I have found the Imigran (Sumitriptan) injections have certainly helped alleviate the pain. Yes there are some side effects – for me personally it makes me feel tired and a little hazy – but compared to the alternative excruciating pain, there is no comparison.
This treatment has enabled me to at least manage the condition and carry on with a relatively normal life during my episodes of cluster headaches. However, this drug is expensive for the NHS and you may find that you have to demand the treatment. In my experience the pills and even oxygen either do not work or take far too long to negate the effects. Therefore, if a doctor is reticent to prescribe this treatment do insist.
I hope this treatment works for you. I have spoken to several sufferers and all have found the treatment has improved their lives. One of which gave me the above advice – and I am forever in his debt such is the effect when a cluster headache begins.

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User683363 said on 06 June 2012

i have had the head aches for 16 years i had them for 7 stright years then they stopped for 2 years then started again for 2 weeks then stopped again this happens every 1 to 2 years .... the pain is so bad that im sick and want to sleep to get rid of the pain ,,,,tried all drugs /doctors they dont want to know as they now come and go ...i know when they are coming as they start when im sleeping they wake me up with great pain the i have 3-4 a day ... i have to adjust my work and life around this pain the wost is when im driving dont know how i get home with the pain

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9901Charlie said on 31 May 2012

I had clusters since 2001, the first time i got them they were non stop and lasted 7 weeks, went to the doctors. they gave me medication for migraines which didn't do anything and as i had them constantly, the pain was unbelievable. i wanted to chop my head off at times. 2 years later and they were back, this time i was with a very caring doctor who knew his stuff and wouldn't brush it off. i was giving injections called Imigran which i take when i feel it coming on which works fantastic, and tablets called Prednisolone. I take 12 a day and they are meant to keep it at bay, which they do. There's always a niggle but they work and would rather feel abit drowsy that have the pain. Get ur doctor to prescribe them, might just do the job.

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Sig724 said on 19 April 2012

I have this week just been diagnosed with cluster headaches from the consultant at the hospital, this has taken since 2010 till now for a reason for my headaches.

It is a relief to have a reason for such painful headaches, but now I am hoping with the medication I should have some normality back in my life.

I can now look more into what it's all about and what treatments are available to me. So here's to better times ahead (pardon the pun).

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steviemac said on 05 April 2012

My doctor reckons ì may have cluster headaches. i've ruled out tension headaches based on the pattern and length of time I have been suffering. I have booked an appointment at the opticians and also for a head and shoulder massage. I am desperate.

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dg0005 said on 12 March 2012

i have been having CH for 32 years ihave tried every painkiller availablle but none work,most docters do not understand what the pain is like.At the moment i have found 2 treaments that work for me,pure oxygen and drinking very strong black coffee, so strong it is like treacle, although the large amount of caffine prevents sleep,the headache subsides within 10 mins and does not reach it,s peak.I hope this imformation will be of help to some people

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cazpickard said on 09 March 2012

hi my name's caroline, been a CH sufferer for more than 15 years. I am currently going through the headaches, coming up for six weeks and have been having regular attacks every day that last from 15mins to more than an hour for the ones I couldnt get pain relief quick enough. I find taking pure oxygen a big help and helps ride through the pain to a low pain level. I recently started rizitriptan and these are great as they melt in the mouth and get to hyour system quicker. I also have sumatriptan nasal spray and anti sickness tablets.
I have just registered with a very understanding GP who specialises in headaches and holds headache clinics so am relieved to finaly get a GP who understands, believe me it is frustrating when you go years without the right Dr and especialy trying to get the right medication and more so enough supply to keep going before the next repeat prescriptions as the medication is about 6 tablets a pack and would only last a few days on regular attacks so pleased the oxygen helps. I really recommend anyone suffering to try oxygen if they have not before. Its a nightmare of time when going through this and hope all others are getting good support x

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johnm8 said on 20 February 2012

I have been diagnosed with cluster headaches in January, At first I thought it was something to do with my teeth. Its the same every time the left nostril plugs and the pain goes up my nose to the top of my head then down my face and ends at my teeth. Its so bad I pace indoors out doors anything till it ends. My longest episode was 1 1/2 hours. I now have it under control with a medication called verapamil I must take 4 times a day with the last 2 pills closer together. if I miss one pill the pain will start but as soon as I take it the pain goes away within 10 to 15 minutes and does not get a chance to climb to the full pain level. This is where I'm at and its looks like I have the chronic one because its daily and only at night from 6 to 10 pm.

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Sp0rty said on 23 January 2012

My gp has been treating me for the past 10 weeks as been having severe headaches 24/7 for 10 weeks which sound like cluster headaches now I've read some of the comments on this site. I was admitted to hospital at the weekend was supposed to have a CT scan but they discharged me and got to wait for an out patient appointment. Also seeing neurologist in Feb. Nothing I've tried from over the counter has worked and hospital sent me home with co-codamal which whilst offers a slight relief does not take away total pain and leaves me drowsy so now can't drive so cant go to work. I felt the doctor in the hospital very much saw me as making things up and really had no time for me (as always hospital very busy, under staffed and no beds). Now waiting to see what my gp says.
People offer me various reasons some even saying its to do with muscles and bones in neck which need realigning by a chiropractor, anyone else been told this? And if so did they see a chiropractor and did it help? Like so many of you have commented I too dont feel (apart from my gp and wife) understands and see it just as a 'headache'. Its flaming painful and really does affect your life.

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monkle said on 31 December 2011

it took years, and a lot of grief from the medical world before I got diagnosed with cluster headaches.

I'm 28 now, and got diagnosed about 2 years ago, after over 10 years of going to see consultants, and being put down by them all as just a girl with a headache who had to learn to live with it. The irony was that the same consultant who told me that when I was 18, was the one who finally decided to tell me I had CH in 2009!

I'm a bit concerned though at the moment, because, when I was diagnosed I was given some soluble painkillers, which I didn't find to help me, and so I don't have anything I can try to help with relief when an attack comes along. Lately, I've started getting a lot of cluster headaches, which lead up to a big bang of a headache , so I am getting anxious about that. But I have had such stressful times with doctors I feel worried about making an appointment only to be cast down in flames again :s

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Sentimental Pragmatist said on 06 December 2011

I'm a 45 -year-old male who's experienced episodic CH for around 30 years now. Much sympathy to those who've had bad experiences with healthcare professionals - the more so because the two GPs I've had have been firmly 'on my side' from day one.

I do get prescription meds when an episode starts, but due to a longstanding aversion to having pills of any kind in the house (a long story, involving a close friend with severe depression and a number of their intentional ODs) I tend to delay going to see the Doc until the frequency of headaches builds to a level that makes it necessary (in my case they seem to start slow, build to a peak over a few weeks and then stay at around 8-12 headaches a day for a couple of months before vanishing suddenly).

I would second the advice to read, read and read some more! The more you know, the better choices you can make - I've certainly learned some useful management techniques from forums and blogs, so read all you can and give as many of the non-chemical ones you can a try.

Oh, and remember - there is an upside to CH. Honest!

If you can live with CH - the aches and pains that afflict non-sufferers seem like a walk on the beach in comparison!

Take care, Folks!

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steph6543 said on 30 March 2011

Cluster headache do not respond to standard analgesics - Anecdotal evidence indicates that cluster headaches can be so excruciating that even morphine does little to ease the pain. Sumatriptan given by subcutaneous injection is the drug of choice for the treatment of cluster headache. Alternatively, 100% oxygen at a rate of 15-25 litres/minute is useful in aborting an attack in some patients.

Cluster headaches are classified as vascular. The intense nerve pain is caused by massive dilation of blood vessels which creates pressure on the trigeminal nerve & pressing on all the nerves surrounding While this process is the immediate cause of the pain, the etiology (underlying cause or causes) is not fully understood.

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steph6543 said on 30 March 2011

Cluster Headache (CH) is a "headache" only in that the pain occurs in the head. Beyond that, there are no real similarities.

Cluster headache is a rare neurological disease. The cause is unknown, but it is related to the hypothalamus in the brain. Most doctors do not know much about them which is why many sufferers are misdiagnosed for many years

The degree of pain involved in cluster headaches is markedly greater than in other headache conditions, including severe migraines. Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented, “Cluster headache causes excruciatingly severe nerve pain probably the worst pain that humans experience."

We're not talking about commonplace stress headaches, or the spinal headaches some people get as a result of spinal anesthesia, or even severe, chronic migraines. These “worst of the worst” headaches are called cluster headaches.

The pain is lancinating or boring in quality, and is located behind the eye (periorbital) & in the temple, radiating to the neck & shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck,more painful than broken bones, burns, or intense back pain from childbirth or having a amputation without any anaesthetic. The condition was originally named Horton's Neuralgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis.

His original paper describes the severity of the headaches as being able to take normal men and force them to suicide. Indeed, cluster headaches are also known by the nickname "suicide headaches" because they have driven many people to suicide"

Imigran injections are the only licenced drug for CH.

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steph6543 said on 30 March 2011

Below is listed some of the medications being used to treat CH - in that list are meds that are prescribed for heart decease, epilepsy, anti-psychotics drugs, steroids.....

Imigran injections
Rizatriptan
Zolmitriptan
Sumatriptan Injectable form
Lidocaine
Verapami
Methysergide
Lithium
Prednisolone
Cafergot
Ergotamine
Anticonvulsant Topiramate
Amitriptyline (europathic pain alleviating agent)

Below is listed a list of alternative treatments/supplements now being looked into for CH with varying success rates.....just the same has above, there is no cure - no guarantee but may help some but not others

Pure oxygen - 15-25 LPM flow rate with a non-re-breathing mask
Melatonin
Magnesium supplements
Kudzu root
Taurine & caffeine
Vigorous exercise has been shown in some cases to be very effective in relieving and aborting an acute attack by increasing the levels of oxygen within the body.
Drinking large amounts of water in the early stages of an attack
White Flower analgesic balm

Everybody is different, there is no right or wrong way for us that suffer with CH.... only ourselves can find out what works best for us.

Unfortunately, due to the rarity of this disease, you may find yourself teaching whatever doctor you have about the disease. Many sufferers have had to go through several doctors and neurologists to find one that is knowledgeable and that will work with them in their treatment.

Knowledge is power and you are your own best advocate in your medical treatment. Read, read, read all you can and then go read some more!

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steph6543 said on 30 March 2011

I am astonished and disappointed with the information that the NHS as on here for Cluster Headaches.

Cluster Headaches is one of the most severe pains known to humans... nerve pain is the most difficult to treat if not impossible... even if a patient with CH took the highest dosage of Controlled Drugs - it wouldnt touch the pain!

CH is a rare neurological disorder, affecting approximately 0.1% of the population, which causes excruciatingly severe pain on one side of the head, usually centered around the eye.

Dr. Todd Rozen,wrote in an article published in US Neurology Review, had this to say about CH:

"There is no more severe pain than that sustained by a Cluster Headache sufferer. CH has been nicknamed the 'suicide headache' because cluster sufferers typically have thought about taking or have taken their lives during a cluster headache attack."

The International Headache Society has classified cluster headache as a primary headache, ICHD II 3.1 Their description is attacks of excruciating severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless or agitated during an attack.

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Guy Copperthwaite said on 10 March 2011

I am always intrugued, asthonised and dismayed regarding the information placed on medical sites about CH. It always seems token, passive and medium ranged regarding its symptons, effects and life style disabilities. I am 45 and started my CH's when I was 13yrs. I used to be Episodic and now Chronic. My attacks, when Episodic were for 16 weeks at 12 attacks per day - and there are many sufferers in this situation.

I have been used as a Guinea Pig. Misdiagnosed, treated like a winger, ignored (even recently by a neurologist) and more importantly mis-understood. This is a disableing complaint. I take 4 - 7 months off a year in incredible pain. I get exhausted, meloncoly, very depressed and suicidal. I have lost more jobs, especailly when in management, than I care to mention because of my apparent weakness (their words - not mine).

Work is a struggle and you are not understood - because everyone has headaches - don't they?

The medication perscibed can be just as bad as the CH's especially Verapermil. Reanal failure is common place due to high levels of meds. Treatments do not stop the pain only aid your intense need to control the situation. Suicides av 18 per year. Rareity 0.1% of the worlds population. I'll leave you to work out the %'s.

I could say more and I do get most frustrated at the irrelevance that doctors pay to this disability. This affects not just you but the whole family - the fear and helplessness I have seen in peoples faces when I bout is frightening. Asking your kids to kill you is heartbreaking.

If anyone reading the above, like most NHS write ups, does not pay justice to the emmense pain sufferers like me go through. Most doctors do not even know it exsists.

Want to see a true reflection of CH on sufferers and their families - then refere to ''OUCH - Organisation for the Understanding of Clusterheadaches''.

Sorry to whinge - but unless you have been there - you wouldn't understand by the write up and or video portrayed above.

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garch2010 said on 15 February 2011

Hi Tisme67

Doesn't suprise me re. your GP. I've found that almost anything that can't identified by the GP in a blood test is thrown into the 6 minute consultation "psychosomatic" waste bucket of a diagnosis e.g. stress, or depression. I was told within a 4 minute consultation it was stress related. Even though, like your husband, all my friends and family think of me as chilled out. When I asked the GP how she came to this diagnosis she said "well you look stressed". Well who wouldn't after two weeks worth of head pain (worse than childbirth pain by some reliable accounts). Of course I didn't look at my best!

There are some studies that link low testosterone to cluster headaches. I had some blood tests done (privately) and low and behold I had the male cluster headache signature ie low testosterone during the cluster period, and normal testosterone when normal. Don’t expect your GP to appreciate this as most GPs have no clue re. male androgenic hormones, mine didn’t even know FSH (Folicle Stimulating Hormone) was related to male hormones and had absolutely no idea what Free Testosterone meant. Once I started on a course of testosterone replacement (private) my headaches improved greatly. Good testosterone and cluster headaches and you will find lots of info.

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Tisme67 said on 30 January 2011

I'm so glad this information has been made available on the internet, thank you NHS for doing this. The symptons described here is almost like someone has been watching my husband & written down their observations.
For 12 years my husband has been suffering & no doctor has been able to accurately diagnose the problem. 1st doctor said my husband suffers from stress. My husband is the most laid back person you'll ever come across, he doesn't know what stress is. Subsequent Doctors diagnosed Blepharitis & prescribed drops. Although a couple of the symptoms may point to Blepharitis, this does not explain the excrutiating pain.
Now with this info printed off, the other half is planning on going back to the Dr's & maybe now, he'll be able to get something to help him. He has a phobia of needles, so let's see what they prescribe.

thank you again NHS for allowing us access to this info, I feel a huge weight has been lifted, knowing now that this is treatable

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KezzieQ said on 14 December 2010

Hey
My dad suffers from these headaches at least twice a night, and has done for i would say ten or so years. They are so awful, having to watch him go through it. He uses imigran. Its a medicine that injects via a small pin prick device into your leg or bum. It works after about 10 mins. Though you can't use two within 24 hours or so.
Not that he listens =(

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Matelot said on 12 September 2010

I first suffered from these headaches about 8-9 years ago. I`d never experienced any pain like it before (and wish I`d never had) After treatment - tablets, no oxygen they suddenly stopped as quickly as they had begun -
Now they are back. And no matter what the Dr. or Consultant have tried on me, they will not go away. I`ve been using oxygen for a while now and with the medication I take it does help, but only a little.
I`ve had all the usual hospital visits and scans etc, all to no avail.
The pain is just unbearable and I dread going to sleep.

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LEEPORTER said on 28 August 2010

andy.... thats shocking treatment. I have suffered from cluster headaches for over 6 years and i agree, they are the worst pain ever.
I also went through the stages of medication trials (as the headaches are so difficult to diagnose) and nothing worked, but My gp finally prescribed tablets and oxygen....... and it works. I still get the headaches but they are a lot milder.
I thought this may help.

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Andy K said on 11 June 2010

I have been suffering from cluster headaches since 2006 and have gone through four GP's during this time as each doctor would just dismiss my symptoms as a stress of tension headache. My current GP has tried feeding me all sorts of medications, mostly unlicensed drugs for cluster headaches even anti epileptic medication which just made me feel worse than the headaches.
I have now been forced to swallow over the counter medication which I know will not help in the long term but do have an effect in the short term (for me that is and I do not advise other people to do the same as me). All I ask is that while my GP finds a medication that works for me he give me plain old pain killers and by now i really don't care about their addictive possibillities as I'll deal with that later. The only thing is is that my GP seems more concerned about the trouble he may get in with the practise manager than my needs.
I have even considered suicide whilst in the middle of one of these headaches, the pain is awful and not like any pain I have felt before.
I need to be heard by my GP and given some responsibillity for my own condition, if I can have and suffer cluster headaches I can suffer some mild withdrawals (if I even get them)

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