OUCH(UK) Organisation for the Understanding of Cluster Headache

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Advice Line

01646 651 979

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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 and Wales 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 CCG [Clinical Commissioning Group] area. For private referrals, you will still need your GP to refer you. In Scotland and Northern Ireland we suggest you ask your GP to refer you to a headache neurologist.

What if my GP refuses to refer me?

There is a registered charity in London, the National Migraine Centre. They will see headache sufferers without a letter of referral. As it is a charity, they do make a charge for consultations; contact them by phone or e-mail to ask about charges.

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 abortive [painkilling] and preventive medications.

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. Further, NICE [National Institute for Healthcare and Clinical Excellence] have brought out a prescribing pathway for cluster headache, specifically written for GPs and is found online.

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 Prescribing Adviser at your local Clinical Commissioning Group [CCG], they are listed in the phone book and/or you can Google them online, and tell them that medications listed in the BNF and licensed for your diagnosed condition are being withheld.

Another publication which details medications that your GP can prescribe for CH is “Understanding Migraine & Other Headaches”, [Professor 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. The books are available at leading chemist shops.

How do I get high flow/demand valve oxygen prescribed?

There are two types of oxygen therapy standard high flow oxygen therapy and demand valve oxygen. These two types of oxygen are outlined in the downloads section - oxygen information.

In England and Wales, to get oxygen prescribed, go to the downloads section of the OUCH website. You will find the Part A Home Oxygen Order Form (HOOF) part completed ready for a cluster headache sufferer. Take the form to your GP, ask them to complete the surgery details, and your details. The GP will carry out a short safety analysis and the surgery then scan and send 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, you can point out that cluster headache is one of the conditions listed on the Home Oxygen Order Form, as being suitable for oxygen prescription. You can also refer them 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 oxygen is also recommended for CH in the book ‘Understanding Migraine and Other Headaches’.

If your GP still refuses to prescribe oxygen, then you can call the prescribing adviser at your local CCG (in the Phone book) and tell them that you are being refused a medication which is listed in the BNF, in the NICE guidelines and are also recommended by both the British Thoracic Society and the British Lung Foundation as being suitable prescribable treatment for the cluster headache.

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. In Northern Ireland we are currently investigating changes to the oxygen supply system. The difficulty has been that the Northern Ireland Assembly has not met for the last three years due to a power-sharing dispute, which has now been resolved and we await updates on oxygen information. We will update this page when we have the full information.

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 contact rights@ouchuk.org and entitlement to other benefits please contact our advice line.

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 online 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 telephone advice line service to sufferers; we provide printed information for sufferers, their supporters and health professionals; we produce an online magazine and we maintain a website. The organisation is run on an entirely voluntary basis and the Trustees also give their time voluntarily. We have to cover the cost of the advice line, printed materials and website maintenance. 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. There are 3 peak times for going into episodic cycle; late March, later October and the end of the year.

Chronic cluster headache: The sufferer experiences daily attacks with a painfree remission of four weeks or less in a twelve month period. Some chronic sufferers have had daily attacks for as long as 25 years without remission.

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 adviceline@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! Diagnosis is made by taking a very detailed case history and it is useful to keep a headache diary to show your headache neurologist; date, time, length of attack, pain scaled between 1 [almost nothing] and 10 [unbearable pain], what meds you took.

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