How many of you have disturbed sleep? How many of you suffer from insomnia?

In my MS practice, insomnia is the most common sleep disorder I encounter, and it generally goes untreated. The reason is simply because most people with MS accept it as part of living with MS, and it is not prioritised by HCPs (healthcare professionals) who tend to focus on other MS-related problems.

Insomnia

Insomnia is defined as difficulty initiating or maintaining sleep and can be a symptom or a disorder. If a disorder, insomnia is associated with a feeling of distress about poor sleep, and it disrupts social or occupational functioning.

In the general population, ~10% of adults have insomnia disorder and another 15-20% report occasional insomnia, i.e. the symptom. In comparison, 40-50% of people with MS have insomnia.

Insomnia is more common in women and is associated with mental health and other medical problems. The most common MS-associated symptoms that are linked to insomnia are pain, neurogenic bladder, spasticity, restless legs, periodic limb movements, alcohol and stimulant misuse, menopausal symptoms, poor sleep hygiene (daytime napping), deconditioning (lack of exercise), anxiety and depression. All these MS-related problems can interfere with sleep initiation, maintenance, or perception.

Insomnia can be episodic or situational and tends to follow a persistent course in most people. Chronic insomnia in itself can cause depression and is associated in the general population with the development of hypertension and dementia. I suspect this applies to pwMS as well. Insomnia assessment, diagnosis, and management require a careful history to document its course, concomitant comorbidities, and potential contributing factors. I suspect many of you have never had your insomnia formally assessed.

A 24-hour history of sleep-wake behaviours can help identify additional behavioural and environmental factors for intervention. Patient-reported outcome measures and sleep diaries provide valuable information about the nature and severity of insomnia, help screen for other sleep disorders, and monitor treatment progress.

A sleep diary should collect information on your sleep cycle (bedtime, arising time, napping) and estimates of your sleep-wake characteristics, i.e. sleep latency (how long it takes to fall asleep), number and duration of awakenings, and an estimated sleep time. Useful PROMS included the Insomnia Severity Index, Pittsburgh Sleep Quality Index, STOP–Bang questionnaire for evaluating the risk of sleep apnoea and the International Restless Legs Syndrome Rating Scale.

Management

If you have any MS-related symptoms that can affect sleep, these need to be managed accordingly. How can you treat insomnia if your sleep is interrupted by anxiety-related rumination, nocturia, pain, leg spasms, restless legs, inability to roll over in bed, vasomotor menopausal symptoms and poor sleep hygiene?

I would start with the following simple self-help guide to improve your sleep hygiene:

* Ensure you spend an appropriate amount of time asleep, at least 6 hours in bed. Some people need more than this to feel refreshed.

* Limit daytime naps to 30 minutes. Please note that napping does not make up for inadequate nighttime sleep.

* Avoid stimulants such as caffeine, modafinil and nicotine close to bedtime.

* Only drink alcohol in moderation. Alcohol is well-known to help you fall asleep faster, but too much disrupts sleep.

* Exercise helps improve sleep quality. As little as 10 minutes of aerobic exercise daily can enhance sleep quality.

* Don’t eat before going to bed. Heavy foods and fizzy drinks can trigger indigestion or heartburn/reflux, which can disrupt sleep.

* Ensure you get adequate exposure to natural light; sunlight during the day and darkness at night help maintain a regular sleep-wake cycle.

* Establish a regular relaxing bedtime routine, which helps the body recognise it is bedtime. This could include taking a shower or bath or reading. However, avoid reading or watching emotionally upsetting content before attempting to sleep.

* Make sure that your sleep environment is pleasant. Your mattress and pillows should be comfortable. The bedroom should be cool for optimal sleep (16-20°C). The bright light from lamps, smartphones and television screens can make it difficult to fall asleep, so turn those lights off or adjust them when possible. Use the blue filter mode on your smartphone and other devices to reduce the inhibition of melatonin from light. Consider using blackout curtains, eyeshades, earplugs, white noise machines and other devices to make the bedroom more relaxing.

If this should fail, other current treatment options include prescribed and over-the-counter (OTC) medications, cognitive behavioural therapy for insomnia (CBTI), and complementary and alternative therapies.

I would avoid over-the-counter sedatives, as these tend to be first-generation antihistamines with potent centrally acting anticholinergic effects that affect cognitive function and long-term brain health (please see ‘Your anticholinergic burden’, 08-Jul-2021).

Some pwMS self-medicate with OTC melatonin, CBD (cannabidiol) and THC (tetrahydrocannabinol) preparations. Please be aware that melatonin has a U-response curve for some people; therefore, lower doses may be better than higher doses. In general, I can’t recommend the use of CBD and THC for insomnia. However, if my patients find these work, who am I to say stop taking them? If you do buy CBD and THC, please try and use a reputable supplier and preferably pharmaceutical-grade products. Medicinal cannabis cannot be prescribed on the NHS but can be obtained via several private clinics. I know it is available online; many patients purchase it this way. As a doctor, I can’t recommend buying it this way. Please be aware that CBD is a drug and is associated with liver toxicity. CBD may interact with your other medications.

If you raise the issue with your HCP, they often reach for the prescription pad. Before accepting a sedative, please ensure you have optimised all of the above and know its limitations. Sedatives are only a short-term solution; they work well for about 4-5 days before you develop tachyphylaxis and need higher doses. Tachyphylaxis refers to the rapidly diminishing response to successive doses of a drug, rendering it less effective. Once you build tachyphylaxis and stop taking sedatives, you may have rebound insomnia. Benzodiazepines (e.g. diazepam) are pretty addictive, and in general, most doctors avoid using them for insomnia. However, there is still a role for them when insomnia is part of acute anxiety. The goto sedatives are the so-called z-drugs (zolpidem, zopiclone, zaleplon and eszopiclone). Zopiclone and eszopiclone have a longer half-life and work for 5-6 hours. In comparison, zolpidem and zaleplon act for a much shorter period (1-3 hours).

Many neurologists still use tricyclic antidepressants, such as amitriptyline, as sedatives. I have largely stopped this practice unless there is another reason for using a tricyclic, for example, to help with pain management. I have primarily replaced amitriptyline with duloxetine in my clinical practice for pain management. Duloxetine is a serotonin-noradrenaline reuptake inhibitor and has much fewer anticholinergic side effects than tricyclics. For those of you taking amitriptyline or another tricyclic, please read my newsletter ‘Amitriptyline: the neurologist's dirty little secret’ (29-Sept-2021).

Please be aware that antispasticity agents such as baclofen and gabapentinoids (gabapentin and pregabalin) also help sleep. However, these agents should only used for insomnia if you have spasticity or, in the case of the gabapentinoids, spasticity and/or pain that needs to be managed.

Psychiatrists and some neurologists use sedating antipsychotics to help with insomnia. This practice is widespread and has been heavily criticised, but there is a role for it in patients with cognitive issues or significant psychiatric problems. The older generation antipsychotics, for example, haloperidol, have now been replaced by safer drugs such as quetiapine and olanzapine. Sadly, as a neurologist, I have seen too many severe adverse events because of the liberal use of antipsychotics as sedatives. In my opinion, there needs to be a good reason for someone to be prescribed an antipsychotic, and insomnia in isolation is not one of them.

The good news is that there is a new class of sedatives on the market in some countries. These are the dual orexin receptor antagonists (ORAs); suvorexant, lemborexant and daridorexant. Daridorexant is NICE-approved for use in the NHS. Daridorexant is recommended for treating insomnia in adults with symptoms lasting for three nights or more per week for at least three months and whose daytime functioning is considerably affected and only if CBTi has been tried but not worked, or CBTi is not available or is unsuitable. I have no experience...