Help, I am peeing myself at night
Nocturia or passing urine at night is a very common problem for people with MS. In this Newsletter Prof G explains how to investigate and treat it.
Case study:
A recent commentator asked if there is a treatment for nocturia, i.e. the medical term for waking up at night to pass urine.
Prof G’s opinion:
The first thing to ask ‘is the nocturia abnormal?’. I have always been taught that getting up once at night to pass urine can be considered normal. However, this is age-dependent. Very few young people need to get up to pass urine after going to bed. In comparison about two-thirds of people over the age of 70 have nocturia. So if you are young and have recent onset nocturia consider it abnormal and if you are older consider getting up two or more times at night to pass urine as abnormal.
The next question is it MS-related? Nocturia can be due to other medical conditions and is not always due to a neurogenic bladder as a result of MS-related damage. Important causes of nocturia that need to be excluded are upper and lower urinary tract infections, prostatism, bladder prolapse, tumours of the bladder, prostate, or pelvic area, diabetes, anxiety and peripheral oedema or swelling of the lower legs from cardiac, renal or liver disease. Nocturia is also a feature of obstructive sleep apnea and some other sleep disorders.
Tip: If you are prone to recurrent urinary tract infections I would suggest purchasing or getting prescribed urine dipstix’s for home monitoring of your urine. Picking up a UTI early means it gets treated earlier and therefore less likely to cause complications, for example, septicaemia.
Nocturia can also be due to excessive fluid intake at night, in particular, alcohol- and caffeine-containing drinks. It is a common side effect of some medications, in particular diuretics that are often prescribed for hypertension. Please check your other concomitant meds.
If all the above causes have been excluded and you have MS it is likely to be due to a neurogenic bladder from spinal cord involvement. If any clinicians are reading this please be aware that before labelling the nocturia as being MS-related is there another superimposed and treatable neurological disease that could be responsible for the bladder problems, for example, spinal cord compression. This is why it is worthwhile doing a neurological examination and if in doubt, re-image the neuraxis. I have a small collection of patients with MS with other superimposed neurological conditions that were responsible for worsening symptoms and include central disc prolapse, cervical spondylosis, spinal meningioma, dural AV-fistula, spinal cord tumours and subdural haematomas. Yes, pwMS do get other problems.
Nocturia is often made worse by constipation and faecal impaction. If you have a problem with constipation get it sorted.
Spasticity also affects bladder function. If you have lower limb spasticity and it is not well controlled, particularly at night, this can be the cause of nocturia. Starting anti-spasticity medication often helps relieved nocturia.
It is worth seeing a continence service so that you can have your post-micturition bladder volume assessed. If you are not emptying your bladder completely, using intermittent self-catheterization (ISC) before going to bed at night will often solve the problem of nocturia.
If you have a very small bladder, having botox into the detrusor muscle to increase the bladder capacity may solve the problem. However, botox almost always has to be combined with ISC. Botox doesn’t last forever and most people need repeat injections every 3-6 months.
If you have urinary frequency and urgency in the day, using a new generation anticholinergic or mirabegron to relax the bladder is often all that is required. Please avoid the older generation anticholinergics such as oxybutynin which cross the blood-brain barrier and affect cognitive function. The best new-generation oral anticholinergic is probably trospium. Others include solifenacin and tolterodine. Please note these agents come as short-acting and long-acting formulations. If you are taking the long-acting tablets in the morning they may not be lasting the whole day. By switching them to a nighttime dose often solves the problem of nocturia.
If nocturia is your main bladder problem, using agents to concentrate the urine at night might help. There is a hormone called DDAVP that works on the kidney to reduce urine output. You can take DDAVP as a nasal spray or tablet. DDAVP can only be taken once a day; if you use it continuously your kidneys will retain water continuously and this can be very dangerous. The latter is called water intoxication; it presents as swelling of the feet and reduces the salt or sodium levels in your blood. If blood sodium level becomes too low it can cause problems. This is why when you start using DDAVP you need to have your sodium levels checked about 4-6 weeks after starting therapy.
I am not sure why, but some neurologists are reluctant to prescribe DDAVP. This is a shame as it is a very good drug and can make the difference between getting a good night's sleep or waking feeling tired. You can use DDAVP intermittently and you can use it during the day, for example when you need to go on a long trip or for social occasions, e.g. going to the movies or theatre. You can only use DDAVP once a day. The most common side effect is swelling of the feet; it happens in approximately a third of pwMS and is more common in pwMS who are less mobile.
Other advice I give to pwMS is that if you are a smoker then stopping smoking may significantly improve your bladder symptoms; nicotine irritates the bladder. Similarly, reducing alcohol and caffeine consumption may also help; both these agents affect the kidneys and cause them to make more urine. Medically this is referred to as diuresis; both nicotine and caffeine are diuretics.
Reducing the amount that you drink before bed may help. However, do not reduce your total fluid intake to less than 1.5 litres each day.
After you have finished passing urine, go back to the toilet again after a few minutes to try to pass some more urine. This is called the double micturition technique, which aims to make sure the bladder is emptied completely before going to bed.
Finally, if all else fails some pwMS may need to be permanently catheterised. This can be done via the urethra or the lower abdominal wall. The latter is called a suprapubic catheter. Being permanently catheterised sounds awful, but in some pwMS, this drastically improves their quality of life, including their sleep.
If you have swelling of the feet because of poor mobility in the day the body often mobilises the excess fluid at night when you are in bed causing a so-called diuresis and nocturia. Sleeping with the head of the bed raised by a small amount counteracts this. A small tilt acts as an anti-diuretic and causes the kidneys to retain salt and water.
So yes there is a lot that needs to be done to diagnose and manage nocturia effectively. As with all symptomatic problems in pwMS a good history and physical examination is required and often some additional tests to exclude other causes and pin down the diagnosis are needed. Then there are clearly treatments to manage nocturia.
My one gripe with pwMS is that so many of you just get used to having nocturia and living with it; you assume it is part of the lived experience of having MS. It is not. Nocturia is pathological and needs to be actively investigated and treated. Nocturia also impacts your sleep hygiene and prevents you from getting a good night’s sleep and hence impacts fatigue and daytime sleepiness.
Please don’t suffer in silence; if you have nocturia and it’s interrupting your sleep get it sorted.
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As this Newsletter is based on a case study and question from a specific patient it should have only been emailed to subscribers only. However, as nocturia is such a big problem for pwMS I waived this rule on this occasion. All general MS-Selfie Newsletters are free. It is the case studies, i.e. my neurological opinions, that need a subscription to access.
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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
> Starting anti-spasticity medication often helps relieved nocturia.
For some reason, I come across very little discussion of the anti-spasticity meds... A post comparing those would be terrific.