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MANAGEMENT FILE the ME association by DR CHARLES SHEPHERD, our medical adviser This leaflet is based on an article which first appeared in the ME Association’s quarterly ME Essential magazine. MEA membership costs £18 a year for people living in the UK/BFPO. For contact details, see foot of this page. February 2020 AND ME/CFS INTRODUCTION Headaches are often reported by people with ME/CFS. They also form part of the symptom list for most diagnostic criteria for ME/CFS. But headaches can obviously have other causes – physical and psychological – as well. WHAT CAUSES HEADACHES? Doctors classify headaches as being sides of the head – as if a rubber band arteries in the head and . primary where there is no obvious link has been stretched around it. Common Temporal is a medical to an underlying medical problem, or causes include , , lack emergency that requires urgent treat- secondary where there is a clear link. of proper , skipping meals, not ment with high-dose steroids. drinking enough fluid and alcohol. Primary headaches include: Headaches in women can be caused Secondary headaches are caused by Cluster headaches by hormonal problems – including an existing medical problem. Some of An excruciatingly painful taking the contraceptive pill, going these are serious, which is why you must that causes intense around one through the , pregnancy, see your doctor if you have severe or eye. Cluster headaches are fairly rare and as part of period pain. persistent headaches. and tend to occur in clusters for a It’s also worth noting that a headache month or two, sometimes around the Common causes, which are normally is the most common symptom of same time each year. Ordinary self-limiting, include such as carbon monoxide poisoning – a painkillers don’t tend to help – this type colds, flu and . Examples of potentially fatal condition. Other of headache normally requires a more persistent or serious causes symptoms include being/feeling sick, prescription-only treatment. include , overuse, dizziness and stomach pain. brain tumours, acute , headaches This should always be queried when intra-cranial (where there These tend to be recurrent, disabling there are other people in the house is raised pressure in the brain and and often prevent a person carrying on with similar symptoms; the headache which has been suggested as a cause with normal daily life. The pain is often disappears when away from home of ME/CFS) and brain infections such as described as pounding or throbbing on and returns when you come back; or a . one or both sides of the head. Other household pet is unwell. symptoms include nausea and Temporal arteritis should always be visual disturbances. queried in elderly people who have a WHAT CAUSES Tension headaches severe headache. Other symptoms HEADACHES IN ME/CFS? These are the most common form of include jaw pain when eating, blurred The simple answer is that we just don’t headache. Tension headaches are often or double vision and/or a sore scalp. know. described as a dull ache with constant This type of headache is caused by Although various abnormalities pressure around the front, top and in the large and medium relating to brain and

The ME Association l 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF l Telephone 01280 818963 l email [email protected] l Registered Charity Number 801279 © ME Association 2020. Reproduction is not allowed without the written permission of The ME Association. 1 function have been reported in the If headaches appear after ME/CFS WHEN TO SEE YOUR research literature, none of them has been diagnosed as a ‘new symptom’, PHARMACIST provide a satisfactory explanation as this should always be discussed with When it comes to simple, over-the- to why some people with ME/CFS have your GP before you start self-treating counter (OTC) treatments for headaches, headaches, and others do not. with over-the-counter, painkilling drugs. a good person to talk to is a pharmacist What we do know from research is RED FLAG SYMPTOMS – who can advise on what sort of drug that there is a link between ME/CFS AND SIGNS treatment may or may not be suitable and migraine-type headaches and safe. The pharmacist can also advise There are a number of ‘red flag’ (reference 1). Where or on what sort of dose you should take symptoms and signs which indicate that migraine-type headaches occur, this and how much is safe to take on a a headache may have a more serious will influence the choice of drugs that regular basis. might be used to both treat and prevent cause. If any of these occur, you must Simple – such as , headaches occurring. see your doctor for further advice: and /Brufen l Sudden severe headache There is also a link between ME/CFS – all have a role to play depending on and temperomandibular joint (TMJ) l Red eye and haloes around individual preferences and sensitivities. disorders (reference 2) – where the joint lights – acute glaucoma There’s no need to buy expensive between the lower jaw and base of the l Neurological symptoms or signs named brands – generic drugs are just causes various types of facial pain. l Coinciding with other new as good. About 20% of people with TMJ disorders symptoms or signs. Some OTC preparations contain have headaches. If you suspect that additional ingredients such as you may have a TMJ problem, the best IN CHILDREN but these may not be helpful if you have person to talk to is your dentist. Headaches can also occur in children ME/CFS. There has also been some research and adolescents with ME/CFS. Again, it’s published from a group at important to check with your doctor PRESCRIPTION-ONLY Addenbrooke’s Hospital in Cambridge who will want to ask about: DRUGS (reference 3) which indicates that an l Where they occur There are also a number of drugs that unquantified, but possibly substantial l How often they occur doctors can prescribe when headaches minority of patients with ME/CFS have l What makes them better become more severe or persistent and what is called idiopathic intracranial (e.g sleep) or worse (e.g food, do not respond to simple OTC remedies. hypertension. periods, stress) Examples include a low dose of a sedating tricyclic drug l Are there any associated WHEN TO SEE called , which may also symptoms? YOUR DOCTOR help with pain and sleep disturbance in l Are headaches reported If you have headaches at the start of ME/CFS. at school? your ME/CFS, this should always form MIGRAINE HEADACHES part of the initial clinical assessment. If a child has a more severe or sudden headache, or persisting head- AND ME/CFS The doctor should ask about the aches, other explanations must be There are several OTC and prescription- location of the pain, severity, duration, considered. Red flag symptoms, where only drugs for treating and preventing exacerbating factors (e.g coughing, you must check with a doctor, include: migraine attacks. sneezing, exercising, change in posture, l – sensitive to For acute attacks, simple OTC pain- menstruation) and relieving factors – all bright lights killing drugs like aspirin, paracetamol of which will help to decide whether l Neck stiffness or ibuprofen/Brufen may be sufficient. there is a need to investigate further Dispersible or effervescent preparations l and what sort of drug treatment is most are preferable because migraine slows l likely to help. Non-blanching skin rash down gut peristalsis (= movements) and If there are any other symptoms or l of arm or leg decreases drug absorption during an signs suggesting that there could be l Changes in conscious level attack. another more serious explanation for or behaviour. If simple painkillers don’t help, there your headaches, the doctor will arrange Any headache that is accompanied are more powerful prescription-only further tests, or refer you to a neuro- by photophobia, neck stiffness or a rash drugs – especially a group known as logist, or to a headache clinic at the could be due to meningitis – which is a the (e.g almo/ele/frova/nara/ hospital. medical emergency. riza/suma/zolmi - ) which act on

2 a chemical-transmitter system in the factors as well. These can include drugs Opiate-containing medications such brain that seems to be involved in (especially the contraceptive pill), foods as codeine cause the most frequent migraine attacks. such as citrus fruits and chocolate; problems. Codeine, both on its own There are also drugs that will reduce caffeine intake; chemicals; stress; poor and in co-codamol (combined with sickness/nausea during an attack and sleep and bright lights. An exclusion paracetamol) are probably the worst compound preparations containing diet can help to identify ‘culprit foods’ – culprits and are best avoided if both a painkiller and an anti-sickness an pproach that should be carried out possible. Non-steroidal inflammatory drug. with the help of a dietician. drugs like ibuprofen/Brufen are less During an acute attack people often If migraine-type headaches aren’t likely to cause this type of headache. find that lying in a quiet dark room being well controlled, you could ask Although triptans are not classed as is one of the most helpful things you your GP to refer you to a hospital- based painkillers, and work in a different can do. Some people also find cooling migraine clinic. way, they can still cause a – using a cold flannel or gel ice pack – medication-induced headache. MEDICATION-INDUCED/ helpful. Treatment involves devising a plan to OVERUSE HEADACHES If you are having two or more reduce and stop painkiller use – but this One of the problems with taking migraine attacks per month, or have has to be done in conjunction with your regular analgesics, especially self- attacks that are becoming increasingly doctor. treating with OTC drugs for tension- severe or prolonged, there are prescrip- So if you are self-treating using type headaches, and for migraine tion-only drugs that can help to reduce regular painkillers, it’s worth having attacks, is that frequent use of these the frequency of attacks. your medication reviewed at regular drugs (eg for more than two days a Preventative drugs include low dose intervals by your GP or pharmacist. week on a regular basis) can actually tricyclic , gabapentin, cause headaches – so people become REFERENCES: pizotifen (limited value and causes trapped in a vicious circle. 1. Ravindran MK et al. (2012) Migraine weight gain), sodium valproate and This type of headache is often headache in chronic syndrome beta-blockers such as described as oppressive and tends to (CFS): Comparison of two cross- (which are often poorly tolerated by be worst first thing in the morning, sectional studies. Global Journal of people with ME/CFS). or after exercise. It may turn into a Health, 94-110. is a further option constant dull headache with spells 2. National Institute of Dental and for more severe migraine where these when it gets worse. Craniofacial Research: Tempero- drugs have not been helpful. Medication-overuse headaches mandibular Joint Disorders. www. nidcr. Clonidine is no longer recommended should be considered when head- nih.gov/oralhealth/Topics/TMJ/TMJDis- for migraine prevention because it can aches are present and are being orders.htm aggravate depression and insomnia. treated for more than 10 days a month 3. Higgins N et al. (2013) Lumbar There is also some evidence to show (for an opiate or triptan drug) or for puncture, and that a popular herbal remedy called 15 days or more a month (for other idiopathic intracranial hypertension: feverfew – a plant that comes from the types of painkiller), or the headache has a cross-sectional study. Journal of the daisy family – can help prevent attacks. developed or worsened during medica- Royal Society of Medicine Short Reports, But do talk to your doctor or tion use for headache. December 2013. pharmacist before taking feverfew because it can have side-effects (abdominal pain, allergic reactions, nervousness, mouth ulcers); should not be taken during pregnancy; can interact with other drugs (eg blood- Medical information contained in this leaflet is not intended to be thinning tablets such as warfarin) and a substitute for medical advice or treatment from your doctor. should not be taken with aspirin or The ME Association recommends that you always consult your ibuprofen (because it acts in a similar doctor or healthcare professional about any specific problem. way). Feverfew should be discontinued gradually because abrupt cessation can We also recommend that any medical information provided cause a withdrawal syndrome. by The ME Association is, where appropriate, shown to and If you have migraine-type headaches discussed with your doctor. you need to look at possible trigger

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