Help, I am having coughing and choking episodes
Swallowing problems are common in people with MS and can be life-threatening. Please take these symptoms seriously and seek advice from your HCP.
Did you know that more than a third of pwMS have swallowing difficulties or dysphagia? This figure seems higher than it should be from my clinical practice, but I don’t routinely screen for it in clinic and hence miss it. A survey I did a few years ago confirms this figure, proving to me that dysphagia is yet another missed hidden MS symptom.
There are two ways to develop dysphagia. Firstly, as part of a clinical attack or relapse and secondly as part of worsening or progressive MS. The basic mechanism is when MS affects the brainstem and the coordination of the muscles of swallowing.
Dysphagia may cause the individual to cough after drinking liquids, or choke when eating certain foods, especially those with a crumbly texture. There is an imaging procedure called a modified barium swallow (videofluoroscopy) that is used to evaluate a person’s ability to swallow liquids of various thicknesses and solids. Speech therapists evaluate, diagnose and treat MS-related dysphagia with strategies and techniques designed to achieve better eating and swallowing.
There are three main swallowing strategies they try to implement: 1) postural changes 2) swallow manoeuvres and 3) behavioural strategies. The speech therapist may adjust posture while eating through activities such as with chin tuck, head turns to the weak side, head tilt to the stronger side, head back, and chin tuck with head turn. They will also incorporate swallowing manoeuvres such as the Mendelsohn manoeuvre, effortful swallow, supraglottic swallow, and super supraglottic swallow. There are also behavioural strategies that allow the individual to incorporate certain techniques while eating particular foods. These behaviours include liquid wash which alternates bites of solids with sips of liquids. The larger bolus strategy is used to enhance the sensory input in order to reduce the delay triggering the pharyngeal swallow. For those with a significant residue of food in the mouth after trying to swallow, the swallow/bolus has the individual swallow 2-3 times with each bite/sip. These types of compensatory management techniques are helpful, yet obviously, they do not slow or prevent the progression or course of MS-related swallowing problems.
As a last resort, we may have to insert a feeding tube; these are often needed to provide adequate nutrition while you’re recovering your ability to swallow from a relapse or when your MS has progressed. A feeding tube reduces the risk of aspiration pneumonia. Another advantage of a feeding tube is it makes it easier to administer medication. There are two types of feeding tubes; a nasogastric tube – a tube that is passed down your nose and into your stomach and a percutaneous endoscopic gastrostomy (PEG) tube – a tube that is implanted directly into your stomach. Nasogastric tubes are designed for short-term use and need to be replaced and swapped to the other nostril after about a month. PEG tubes are designed for long-term use and last several months before they need to be replaced.
Whether you live with MS or are a caregiver for someone living with it you can empathise with the array of swallowing challenges and the subsequent psychological toll that it creates for all. Unfortunately, if the swallowing challenges turn into a choking episode there is a chance the individual may aspirate, or inhale fluid or solids into the upper respiratory tract, resulting in aspiration pneumonia. This condition can be serious, requiring treatment with antibiotics, or could even be fatal. Choking on food without aspirating can be just as deadly whether the Heimlich manoeuvre is performed correctly or not.
PwMS rarely complain of pulmonary dysfunction, however, upon pulmonary testing, dysfunction is commonly found during even the mild impairment phase of the disease. Muscle weakness in the diaphragm, changes in muscle tone, motor incoordination, and postural abnormalities all contribute to the reduced pulmonary function and essentially contributing to an ineffective Heimlich manoeuvre. If Heimlich manoeuvre is unsuccessful the outcome is grim. Over the three decades, I have been involved in the management of pwMS I know of several pwMS who have choked to death so please take this problem seriously. Dysphagia is also the main cause of aspiration pneumonia and is one of the main causes of death in people with late-stage MS.
With our treatment target of NEIDA (no inflammatory disease activity), we hopefully will prevent ongoing damage to the brain stem or at least delay it by many years. I, therefore, predict that as we have improved our management of MS the incidence of dysphagia in pwMS is falling. For example, simply starting interferon-beta three years earlier compared to pwMS on placebo increased their chances of being alive at 21 years by almost 50%; this figure will be much better with the more effective DMTs. The cause of death in the latter study was due to MS in the majority of cases hence we can extrapolate this to a lower incidence of pneumonia and its main cause dysphagia.
It is a very frightening experience not being able to swallow properly and having choking episodes. If you have dysphagia you need to make sure your neurologist and nurse know about it so you can be referred for treatment. Your family and carers also need to be trained to do a pharyngeal sweep and the Heimlich manoeuvre to dislodge food in your throat if you choke. Simple things, common sense things, can often prevent a catastrophe.
This Newsletter is based on several past posts on the MS-Blog.
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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.
Please don't be afraid of feeding tubes! My spouse has had a G-tube for 3 years now and I wish we had gotten it *years* prior to that - he developed urosepsis on more than 10 occasions due to dehydration. A feeding tube would have let us keep him hydrated and medicated while he still ate for pleasure while he still could.
I wish more neuros would bring up this option.
A very informative post thank you.
I don't have too many problems with the physical action of swallowing (so long as eat slowly and carefully) but food and liquid can take a long time to work their way down to my stomach. I remember in the early days of MS first noticing fluid building up in my throat one evening causing me to constantly cough / throat clear. I could even cough back an ibuprofen tablet virtually as swallowed (they are bright pink) 5 mins after taking. Achalasia of the cardia was excluded and, despite my then neurologist firmly stating it was nothing to do with MS, a second and extremely observant neurologist later picked up on my cough in clinic.
Over the years I've learnt to control the throat clearing and re-swallow so not to cough in public. Just as well in the covid era!