Firstly contact OUCH UK. They are the registered UK charity offering support for Cluster Headaches and related forms of Trigeminal Autonomic Cephaligia disorders. www.ouchuk.org
Secondly- the GP should be following the NICE guidelines on management of primary headache disorders and the BASH guidelines.
Over the counter painkillers are as useful as eating smarties. They do not work and will not work. Verapamil is often the first preventive drug of choice at a headache clinic for Cluster Headaches as it tends to be one of the few that can help – betablockers are favoured for migraine headaches. Verapamil does not suit everyone. Everyone is different and CH is complex to manage so ask for a referral to a specialist hospital headache clinic. OUCH UK can provide information as to which ones are capable of managing CH. Please note there are some headache clinics that focus on migraines and tension headaches only.
Cocodomol- avoid using for CH. It does not help cluster pain and it has a bad habit of setting off rebound headaches on top. Rebound headaches are as painful as migraines and as nasty. They trick you into thinking you need to take more and more co-codomol, until you end up hooked on the stuff and still have CH to deal with. No opiate drug will touch the pain of CH. The only licences drug that can help is sumatriptian. This needs to delivered via a nasal spray- akin to snorting up the contents of a sixth form chemistry sink or by auto-injectors. Gp’s will try to prescribe the tablets as they are far cheaper. Only the nasal sprays and auto-injectors work fast enough to impact CH. For CH and CH ONLY - you can use up to two doses of sumatriptain per day. Best not to unless you really need to as it can cause side effects.
Oxygen is used as an abortive drug. It helps with the pain – HOWEVER- it needs to be delivered via an ultra high flow system with a demand valve. These are available on the HOOF prescription form and some GP’s are able to prescribe 15LPM with a none rebreather mask. Many only prescribe low flow rates [under 15 LPM] which is frankly smarties. My home oxygen tanks can kick out an ultra high flow of up to 160LPM of oxygen using the demand valve. The valve and mouthpiece that looks similar to the etonox valves used in labour wards. Home oxygen can only be prescribed. This provides you with 24 hour support from the home oxygen supplier and access to replacement sundries when needed. They also do six monthly home safety checks and liase with both the local fire service and utility suppliers so you are on the priority lists if utility supplies go down. You also need to inform your car insurers of carrying oxygen in your car. It does not add to the cost but you will not be insured if you carry oxygen and do not tell them. I also recommend using transport hazard symbols on your car [lets emergency services know about potential hazards]
Hospital Clinics will screen those with CH to rule out rare causes of the headaches using an MRI or CAT or both. Most of the time these screens will not show anything. CH is diagnosed based on symptoms. It can help the hospital to confimr a tentative diagnosis if you can film an attack or take photos of your sons face during an attack as many of us have ‘Horners Syndrome’ during actual attacks. I advise you NOT to touch your son or try and get his attention to do so during an attack as the pain is so bad at the time it means nothing else exists. Never stop him moving around. Offer ice packs to put on the pack of his neck and eye socket as this can help notch the pain down just a little. Some find heat pads help. Some interchange from hot to cold to try to confuse the additional pain signals running in the TMN. I have not found anything that works for pain running via the optic nerve.
The recommended management for migraine does not help CH. Falling asleep tends to set off attacks so it can make sleep rather difficult. Some have found simple mindfulness and relaxation exercises helpful. When it is really bad I just rest where I can when I can. Sleep during a bad bout of CH attacks can become mythical. There is something known as ‘shadows’ and ‘shadowing’. The best way I can describe this is like the aftershocks following a major earthquake. Its best not to use drugs with these and find a way to distract yourself, pace around or my all time fave- stick my head into the cool of the freezer with the door open. Cold air and ice packs can help with bad shadows.
BTW if you keep a headache diary you need to keep an indepth one rather than those used for 'just' migraines. OUCH UK should be able to help with a template or know of any new apps that do this. Such a diary helped the Prof of neurology work out what I thought where me being a wuss with headaches were chronic migraines and the migraines were severe CH attacks.
If you have any questions – happy to answer and signpost you. I have a clear diagnosis of chronic migraine and cluster headaches, under a prof of neurology as two for the price of one makes my headache disorders too complex for my GP to manage and have had this for way too many years.
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