Cluster headaches 

Introduction 

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.

This page aims to explain the causes, symptoms, treatment and prevention of cluster headaches, and offer advice to anyone who suffers them.

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.

Each cluster headache lasts between 15 minutes and three hours (but often less than an hour). They may start in the early hours of the morning and wake the person from sleep. 

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.

See Cluster headaches - symptoms for more information.

Who is affected

Cluster headaches are rare and affect around 1 in 1,000 people. Anyone can be affected, but approximately 8 out of 10 people who have them are men and most are smokers.

It's not known what causes cluster headaches, but they're more common in autumn and spring. In some people, an attack can be triggered by drinking alcohol or an extreme increase in temperature (such as from exercising in hot weather). See Cluster headaches - causes for more information.

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 (see Cluster headaches - treatment for more information).

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

Last reviewed: 19/07/2011

Next review due: 19/07/2013

Comments

18 Comments

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Comments are personal views. Any information they give has not been checked and may not be accurate.

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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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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