Tag: clinicspeak

Sleep glorious sleep

In last week’s BMJ there was a short piece on ‘How to write your own wellbeing prescription’ and the top piece of advice was to improve your sleep. Sleep is the most important performance-enhancing agent we know so you have to find a way to optimise your sleep. We know poor sleep is the elephant in the room. Most studies on sleep in MS show that over 70% of pwMS have a sleep disorder of some kind. The following figure summaries the results from a survey we did many years ago of our blog readers. I doubt much has changed. 

You know what it is like if you wake in the morning and you have had a good night’s sleep; you feel energised, your mood is better and you are prepared to take on the world. In contrast, when you wake from a night of tossing and turning, legs jerking, getting-up to go to the toilet several times, with a hangover from too much alcohol the night before, etc. you find it challenging to get through the day; you are irritable and your mood is low. 

The study below in people with MS shows that restless legs syndrome, which is commoner in pwMS, not only affects sleep quality but is associated with poor cognition. So if you have RLS bring it to the attention of your HCP so that you can get it treated. 

The following is a simple self-help guide to improve your sleep hygiene:

1. Make sure you spend an appropriate amount of time asleep in bed; a minimum of 6 hours. Some people need more than this to feel refreshed. 

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

3. Avoiding stimulants such as caffeine, modafinil and nicotine close to bedtime. 

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

5. Exercise helps improve sleep quality. As little as 10 minutes of aerobic exercise per day can improve sleep quality. 

6. Don’t eat before going to bed. Heavy foods and fizzy drinks can trigger indigestion or heartburn/reflux that disrupts sleep.

7. Ensure you get adequate exposure to natural light; exposure to sunlight during the day, as well as darkness at night, helps to maintain a normal sleep-wake cycle. 

8. Establish a regular relaxing bedtime routine, which helps the body to recognise that 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.

9. Making 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 that reduces the inhibition of melatonin from light. Consider using blackout curtains, eyeshades, earplugs, white noise machines and other devices that can make the bedroom more relaxing.

10. And if you have pain, nocturia, restless legs, sleep apnoea, etc. get these adequately managed via your HCP.

Please let us know what strategies work for you to improve your sleep.  An important role of this blog is to share best practice and alternative practices as well. We like it when our patients hack their own physiology to come up with solutions that work. Don’t forget our treatment aim is to maximise your brain health and part of this philosophy is the holistic management of MS including sleep.

Cederberg et al. Restless Legs Syndrome, Sleep Quality, and Perceived Cognitive Impairment in Adults With Multiple Sclerosis. Mult Scler Relat Disord. 2020 May 18;43:102176. doi: 10.1016/j.msard.2020.102176. 

Background: Restless Legs Syndrome (RLS) is a prominent sleep disorder that often worsens sleep quality and perhaps cognitive function in adults with multiple sclerosis (MS). The present study examined the relationships among RLS prevalence and severity, sleep quality, and perceived cognitive impairment in adults with MS.

Methods: Participants (N=275) completed the Cambridge-Hopkins Restless Legs Syndrome Questionnaire, the International Restless Legs Syndrome Study Group (IRLS) Scale, the Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ), the Pittsburgh Sleep Quality Index (PSQI), the Patient Determined Disease Steps (PDDS), and a demographic and clinical characteristics questionnaire.

Results: Persons with MS who had RLS (i.e., MS+RLS; n=74) reported significantly worse perceived cognitive impairment compared with those who did not have RLS (n=201; p=0.015). Bivariate correlation analyses within the MS+RLS group indicated that greater RLS severity was significantly associated with more severe perceived cognitive impairment (r=0.274) and sleep quality (r=0.380), and worse perceived cognitive impairment was significantly associated with worse sleep quality (r=0.438). Linear, step-wise regression analyses indicated that RLS severity significantly predicted perceived cognitive impairment (β=0.274), but the inclusion of sleep quality (β=0.391) accounted for the relationship between RLS severity and perceived cognitive impairment (β=0.126).

Conclusions: Our results suggest that sleep impairment may be an intermediary factor in the association between RLS severity and cognitive impairment in persons with MS who present with RLS. The diagnosis and treatment of RLS symptoms and other effectors of sleep quality could improve neuropsychological consequences of MS.

CoI: multiple

Self-diagnosis

Dear Neuro,

You see me once a year for 15 minutes, you look at my MRI report and blood results, you ask me a lot of questions, you examine me and then you tell me that everything is fine. At my last visit, you said my MS was stable, you mentioned to me that I was NEDA, because I had had no relapses, no new lesions on my MRI and my EDSS was static at 3.0. 

I have now looked up and read about NEDA (no evident disease activity) and I disagree with your assessment. I am clearly getting worse. The Christmas before last I remember going for a 5-mile walk with my family after lunch and managed it fine. When I tried the same walk last Christmas I had to turn back after a mile because my right leg was dragging. 

I also have other problems that you didn’t pick up on during the consultation. I now have to get up 2 or 3 times at night to pass urine. My memory is much worse than it was last year. My head feels foggy all the time as if I have a permanent mild hangover. I now avoid any social occasions with colleagues after work. The truth is I am too tired to at the end of the day to do anything else than get home. I feel exhausted most of the time. I have stopped gardening. 

I think I have developed secondary progressive MS. Do you agree? Would it be possible to see you sooner to discuss this? Is there anything you can do about my deterioration in functioning?

Yours sincerely

Patient Y

Does this story sound familiar? 

At first glance, it is easy to say this person has SPMS. But do they? 

Based on the definition of SPMS it seems likely, i.e. objective worsening of function for at least 6-12 months independent of relapse activity. Based on the latter it seems Patient Y is not having relapses. As for the objective worsening of function the interpretation is in the eye of the beholder. As far as the neurologist is concerned the patient is not deteriorating because the EDSS is stable. In comparison, the patient has documented, albeit rather crudely, a drop if in functioning. Who do you believe? 

The scenario illustrates what will happen when MSers begin to self-monitor and prepare for clinic appointments in advance, i.e. they will potentially be self-diagnosing secondary progressive or worsening MS. 

However, I want you to take a step back and ask could the deterioration be due to something else, something reversible? If it is due to something else it may be treatable and potentially reversible. 

Does this patient have any reversible comorbidities that could be responsible for the deterioration? Smoking, hypertension, diabetes, metabolic syndrome, obesity, underactive or overactive thyroid function, renal, liver, heart or lung disease? If a woman, is she menopausal? What about mental health issues; depression and anxiety? Is this patient drinking too much alcohol? Is the patient malnourished? They may be eating a diet of toast and tea.

Is this patient sleeping well? Getting-up 2 or 3  times a night to pass urine means their sleep hygiene is very poor. Just improving this patient’s bladder problems will have a major impact on their daytime fatigue and work performance.

What about a chronic infection? Could this patient have a low-grade urinary tract infection? What about their oral health; could they have gingivitis or periodontitis? Sinusitis?

Is this patient exercising enough? I suspect not. The drop off in the walking distance could be deconditioning, i.e. losing fitness because of lack of exercise. In this particular patient, I suspect this, however, is unlikely because deconditioning is unlikely to result in a dragging leg on walking a mile.

What medication is this patient on? Are they are on an anti-spastic medication or anticholinergics for their bladder problems? Both these class of drugs affect cognition and may explain the memory loss and brain fog. I have commented on baclofen being particularly problematic in the past.

How well is patient Y? Patient Y seems to have become socially isolated and withdrawing from having social interactions with their work colleagues. The patient has stopped gardening, which helps improve mental health. What about the home environment? Is patient Y’s relationship with the family stable, etc? What are this patient’s finances like? Are they in debt? Are they struggling economically? 

Could this patient have smouldering MS? Does this patient need an MRI of the spine and a lumbar puncture to measure CSF neurofilament levels? We know that brain MRI will not pick-up all disease activity. Does this patient need to start a DMT or have a DMT switched and escalated? I would be very interested to know how this patient’s cognitive function is and whether or not they have a swiss cheese brain (lots of black holes) and brain volume loss. Having this information makes a diagnosis of SPMS and/or smouldering MS more likely.

How old is patient Y? If they are over the age of 50 we may be seeing early ageing. 

Making a diagnosis of SPMS is not simple and most neurologists would prefer not to do it. However, if we are to improve the lives of our patients we need to take a holistic approach to the management of MS. Clinical practice must not be a box-ticking exercise. We need to provide our patients with the tools to self-monitor, self-diagnose and self-manage. We need them to become partners on a life-long MS journey that will result in better outcomes and happier and more content MSers and HCPs. 

To reiterate the philosophy of marginal gains “if you break down everything we can think of that goes into improving MS outcomes, and then improving it by 1%, we will get a significant increase when we put them all together”. This case vignette illustrates this very well. 

I hope this post motivates you to start self-monitoring and to start preparing for your consultations with your HCP. You need to have a list of questions to ask. Don’t let your neurologist or HCP fob you off. You know yourself better than they do; please don’t forget this.

CoI: multiple