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OUCH(UK) Organisation for the Understanding of Cluster Headache

FAQ

What is Cluster Headache?

Cluster headache is a rare and excruciatingly painful neurological disease, described here.

How do I get a referral to a neurologist?

In England you can go to your GP and ask for referral to a consultant of your choice under the NHS ‘Choose & Book, Choice at Referral’, even if the consultant is out of your PCT area. For private referrals, you will still need your GP to refer you.

What medications should I ask for?

If your GP is already in agreement that you have CH, then the medication recommended by the BNF (British National Formulary – GPs’ prescribing bible) is subcutaneous sumatriptan [Imigran in injection form), or the nasal spray version; high flow oxygen is also recommended. A drug called verapamil is the first-line choice for CH prevention. Your GP can prescribe both.

See also Treatments

What if my GP refuses to prescribe the recommended medications for CH?

You can refer your GP to both the BNF (British National Formulary – GPs’ prescribing bible) section on cluster headache and to the reverse of the Home Oxygen Order Form where cluster headache is listed as one of the conditions for which oxygen is prescribed; you can also refer your GP to Home Oxygen Therapy Service specification (HOTS) a copy of which is in every doctor’s surgery, and which specifically mentions GPs can order oxygen for CH sufferers.

If your GP still refuses to prescribe, you can complain to the practice manager that recommended medication for your condition is being withheld and if that complaint is not satisfactorily dealt with, then you can contact the Prescriptions Adviser at your local PCT [Primary Care Trust], they are listed in the Phone Book and/or you can Google them online.

Another publication which details medications that your GP can prescribe for CH is “Understanding Migraine & Other Headaches”, [Dr Anne MacGregor] one of a series of books on different health conditions, by Family Doctor Books and published in association with the British Medical Association; there is a complete chapter on cluster headache.

Is Cluster Headache a disability?

Yes, it is, even if you are an episodic sufferer, employment law says so - London Clubs Management v Hood (2002). Further information on your employment rights and entitlement to other benefits is available from the Neurosupport website. http://www.thebraincharity.org.uk/

Do I qualify for benefits if I have CH?

Yes, you may do; see above.

How do I get my family/friends/employer to understand Cluster Headache?

The leaflet, ‘Pain so Severe’ is very helpful to show to family, friends and employers to help them understand what you go through as a CH sufferer. There is also a leaflet aimed at schoolchildren/students/teachers to help them understand what their pupil/friend/student is suffering and to work with them to enable them to continue their studies.

Is Cluster Headache a notifiable disease? (RE: driving conditions)

No, it is not. DVLA have confirmed this to us. However, if you know you are about to have an attack, stop as soon as it is safe to do so [if you are on the motorway then leave at the next junction, if it is within a reasonable distance]. Deal with your attack in the usual way and wait until you are feeling okay again [we would suggest half an hour or so] before resuming your journey. Carry your ‘info card’ with you. Every new member receives one on joining; it has a brief description of CH on one side and on the other the contact details for OUCH (UK). It’s useful to hand to people if you are in the throes of an attack and are unable to speak. We also suggest that you notify your insurer if you carry portable oxygen in the car. This should not affect your premiums, but if you make a claim and you have not informed them of the presence of oxygen, they may use this to invalidate your claim.

How do I become a member?

You can JOIN OUCH(UK) HERE. Or you can download a postal application membership form and send it together with your subscription to the address given on the form. Once you are a member you can log in to the member’s forum, you’ll receive regular Chit Chat magazines and updates on CH news.

Where do you have meetings?

All over the UK. We notify members on the website meetings page, in Chit Chat and by e-mail shot of the dates and venues of meetings. We try to visit a region once very two years moving round the country. The meetings are an excellent opportunity to meet with other sufferers and to ask questions of the health professional speakers.

Why do I have to be a member to post on the OUCH forum?

At one time, the OUCH forum was open to all to register and post. Sadly a few years ago, some serious attempts were made to infiltrate both the website and forum and bring down both; there were and are some sad individuals who derive pleasure from crashing patient support group websites. Many sufferers are vulnerable people and in order to protect them and preserve the hard-won integrity of OUCH [UK] we had to make the forum password-protected and available to paid up members only.

However, ALL the information on the website, including the downloads, are free to all to read and use as they see fit; the Trustees of OUCH could not, in all conscience, deny access to information to people who suffer such a devastating disease.

Why do I have to pay to join OUCH - after all you are a charity?

It is precisely because OUCH is a charity that a membership fee is charged. We are not a website-only organisation; we provide a vital helpline service to sufferers; we provide printed information for sufferers, their supporters and health professionals; we send out a magazine to sufferers and we maintain a website. The organisation is run on a mostly voluntary basis – there are two part-time paid employees of the charity – and the Trustees give their time voluntarily. We have to cover the cost of the helpline, printed material, website maintenance, and wages for the part-time staff. Our subscription fee is currently the lowest of all the UK headache charities.

Is there a cure for CH?

In a word, no. CH is lifelong and at present incurable. Having said that there are many treatments which can improve lives for sufferers and for this reason it is important that you are monitored by a headache specialist neurologist so that your treatment can be tailored to suit you – what works for one, doesn’t for another. See also Treatments.

What's the difference between Episodic and Chronic CH?

Episodic cluster headache: The sufferer experiences attacks on a daily basis over period of weeks or months; they then disappear for weeks or months, but they will come back.

Chronic cluster headache: The sufferer experiences daily attacks with a painfree remission of four weeks or less in a twelve month period.

See also Glossary of Terms

Why can't I find drug regimes on the website?

Because they are subject to constant change and updating. If you require a copy of a particular regime, contact info@ouchuk.org or helpline@ouchuk.org stating which medication you have been prescribed.

Not sure what headache I have, how do I find out?

Take the test, ‘Do I have CH?’

Is there a test to diagnose CH?

No; however, most headache specialist neurologists will order an MRI scan to rule out any other possible cause of our excruciating pain. If the MRI is clear, well at least you know there is nothing else nasty going on in your brain!

How do I get oxygen prescribed?

In England and Wales, to get oxygen prescribed, go to the downloads section, or click here for the HOOF form. You will find the Home Oxygen Order Form (HOOF) part completed ready for a cluster headache sufferer. Take the form to your GP, ask him to complete the surgery details, and your details. The surgery then fax off the form to the oxygen supplier who then call you direct to arrange delivery. Your GP will ask you to sign a Home Oxygen Consent form for your personal details to be forwarded to the oxygen supply company.

If your GP is in any doubt about prescribing for you, then you could refer him to the Home Oxygen Assessment Service specification (every doctor's surgery has one) section on short burst oxygen therapy where it states primary clinicians (GPs) can prescribe high flow oxygen for cluster headache patients. In 2016, the National Institute for Health and Care Excellence – NICE – published guidelines for GPs for diagnosing and prescribing for headache conditions and oxygen is included in those guidelines. Those guidelines are downloadable here. It is also listed in the BNF (British National Formulary - GPs prescribing bible) as an abortive for cluster headache and the British Medical Association produce books in a series called Family Doctor Publications which are available through independent chemists and there is one title 'Understanding Migraine and Other Headaches' with is a very good chapter on CH which also recommends prescribing high flow oxygen.

If your GP still refuses to prescribe, then you can call the prescriptions adviser at your local PCT (in the Phone book) and tell him that you are being refused a medication which is listed in the BNF as being suitable prescribable treatment for the condition with which you have been diagnosed.

In Scotland the patient has to be referred to a secondary clinician (consultant) for prescription of oxygen, using their version of the HOOF form. The consultants will have the HOOF form. It is similar in Northern Ireland.