Question

I know that headaches are quite often reported by people with ME/CFS. But it’s not a symptom that I have had until recently. My doctor says they are migraines and is going to prescribe some anti-migraine treatment if they continue. Are migraine-type headaches also more common in people with ME/CFS? And how should they be managed?

Answer

In addition to headaches being a diagnostic symptom of ME/CFS, there is also some research evidence to indicate that people with ME/CFS are more likely to experience migraine-type headaches.

Migraine headaches have several very characteristic features which differentiate them for other types of headache. In particular:

• one-sided location
• pulsating quality
• moderate to severe intensity
• being associated with nausea, photophobia (sensitivity to light) or phonophobia (sensitivity to sound).

Some people experience other symptoms just before a migraine attack, such as:

• feeling very tired and yawning a lot
• craving certain foods or feeling thirsty
• changes in mood
• a stiff neck
• passing urine

Warning signs that predate a migraine (called an aura) include:

• visual changes, such as seeing zigzag lines or flashing lights
• numbness or a tingling that feels like pins and needles
• feeling dizzy
• difficulty speaking

Migraines usually last between two hours and three days, with some symptoms (such as feeling very tired) starting up to two days before the head pain starts and finishing after the headache stops.

Some people have migraines several times a week (chronic migraine), while others do not have them very often (episodic migraine). It's also quite common to have migraines before or during your period – this is called menstrual migraine. Most people find their migraines slowly get better as they get older.

Lifestyle modifications can help to reduce the frequency of attacks. These include trying to ensure adequate sleep, good hydration and regular meals (every 3–4 hours), limiting caffeine intake and addressing any issues such as stress or foods that may be helping to trigger attacks.

Management of an acute attack involves the use of over-the-counter painkillers (paracetamol or a non-steroidal anti-inflammatory drug) possibly combined with an antiemetic (anti-sickness drug). Some people find that a small glass of Coca-Cola can be helpful – as can lying down in a darkened room.

First-line preventative options, for those with migraine attacks on over four days a month, include drugs such as propranolol, candesartan, and amitriptyline, with lower starting doses building up to the highest tolerated dose.

If attacks become more persistent, there are drug treatments called triptans that can be tried. Newer drugs called rimegepant or atogepant are an option if triptans are ineffective or contraindicated.

If preventative treatments are not reducing the frequency and severity of attacks, you could be referred to a headache or migraine clinic for more help.

• Research paper covering ME/CFS and migraine type headaches
• The Migraine Trust is a very reliable information and support charity
• The MEA has an information leaflet covering all aspects of headaches and ME/CFS