Sleep Apnoea – personal story
The following is a personal account, by one of our members, Edwin Bailey, of living with Sleep Apnoea. This was originally presented at our annual conference, in the Tullamore Court hotel in May 2011.
A little background…
I was born in 1949, 3rd of seven children, lived on a farm near Rathdowney in Co. Laois. In summer of 1958 I was on holiday with my cousins in Tipperary and became ill. My parents came and brought me home and called the family doctor. Dr. Comer came and prodded and probed for a bit and then diagnosed polio. I was rushed to Abbeyleix Fever Hospital where the diagnosis was confirmed. Dr. Comer was rather chuffed that he had made the correct diagnosis. I spent an overnight in Abbeyleix and next morning was brought by ambulance to Cherry Orchard Hospital Dublin. There I was immediately put in an iron lung. At first I found this very uncomfortable. I was boxed into what appeared like a large enclosed horizontal tank with only my head showing. There were 3 port holes at either side for nursing access and at the end a bellows which oscillated up and down in tune with my breathing. This action helped my chest to move up and down assisting my breathing. At this stage I had complete paralysis and the action of the bellows and iron lung kept me alive for the next few weeks. I made a good recovery, participating in an exercise regime where I spent hours in the gym daily, and was taken to the therapy pool where the action of the warm water and massaging and stretching of the muscles aided recovery. There were many tears during this period as the pain of stretching the muscles was intense and lasted quite a few days.
After 3 months I was transferred to Clontarf Orthopaedic Hospital where the exercise regime continued and after 6 months was allowed home. I was left with a weak right leg, back and tummy muscles. I wore a calliper on my right foot and I subsequently had a tendon transplant to counteract a dropped foot. Soon after I began to develop scoliosis, which is curvature of the spine, for which I had a spinal graft in 1963. I spent a further 9 months in Killcreane Orthopaedic Hospital in Kilkenny with this problem. I then had a long period of time where I had no medical problems or contacts with the medical profession. I trained as a watch technician, got a job in Shannon Airport, I met my wife there, got married and have 2 children now all grown up and fending for themselves.
My own Sleep Apnoea
About 9 years ago my wife constantly complained about my snoring which was very loud and disturbed her sleep. I ignored her at first, until she threatened to go to the spare room ….. permanently. On one occasion while I was asleep, she recorded me snoring and played it back full volume, getting her own back on me. This made an impression on me. Along with snoring I also regularly stopped breathing while sleeping, sometimes for as much as 50 seconds. This alarmed my wife who witnessed it many times, something I was completely unaware of at first. This sleep behaviour meant I did not have satisfactory deep sleep and woke up tired and often lacked energy. So much so that one day I fell asleep in the office. The danger was I could fall asleep while driving, kill myself or perhaps somebody else. I realised something had to be done. I went to my GP who immediately suggested I had Sleep Apnoea. He arranged an appointment with a respiratory specialist at the Respiratory Clinic in Limerick Regional Hospital. After a series of non-intrusive tests the specialist, Dr. Malloy, confirmed the GP’s diagnosis. I had Sleep Apnoea. I asked what the cure was, she responded “There is no cure – but we can treat you”.
What is Sleep Apnoea?
Sleep Apnoea is “the cessation of breathing during sleep”. The word ‘Apnoea’ (Apnea) is derived from a Greek word meaning ‘without breath’. When breathing stops, the level of oxygen in the blood drops. This causes a reflex response and a message is sent to the brain “wake up – wake up”. The airways in the throat are forced open and one wakes up with a loud snort and a jerking motion. One is not fully awake but awake out of your deep sleep. This could happen 50 times a night or more resulting in a very bad night’s sleep. One is constantly tired and the next day’s activity is affected. One may become irritable thus all around them suffer. Sleep Apnoea is not a disease; it is a condition.
Classification of Sleep Apnoea
There are 3 different types of Sleep Apnoea:
- Obstructive Sleep Apnoea
- Central Sleep Apnoea
- Complex Sleep Apnoea
By far the most common is Obstructive Sleep Apnoea (OSA). We will concentrate first on this one.
Obstructive Sleep Apnoea
Obstructive Sleep Apnoea is by far the most common category of sleep-disorder breathing. The muscle tone of the body ordinarily relaxes during sleep. This causes the collapsible walls of soft tissue around the airway to obstruct breathing during sleep. Individuals with low muscle tone and soft tissue around the airway, perhaps because of obesity, or structural features that give rise to a narrowed airway, are at high risk of suffering from the condition. The older person is more likely to have OSA than young people. Men are more likely to suffer than women, though it is not uncommon in women.
Those At Risk
- Older people, male and female, after mid life
- People who are over weight
- Active smokers
- Those with diabetes (3 times more likely)
- Men more than women
Common Symptoms & Indicators
- Restless sleep
- Sleepiness during the daytime
- Loud snoring (not everyone that snores has sleep apnoea or vice-a-versa)
- Tired and irritable
- High blood pressure
- Lack of energy
- Enlarged tonsils
- Morning headaches
- Mood-swings or depression
- Learning and/or short term memory difficulties
- Sexual dysfunction.
Diagnosis is usually performed in a Respiratory Clinic by a respiratory specialist. First the symptoms are reviewed, and you will be asked to wear overnight, an apparatus which will measure the number of times an EVENT or APNOEA (cessation of breathing) occurs during sleep. This is usually performed at home, it is called a polysomnogram. On completion of this you will have a respiratory disturbance index which when compared to the norm will indicate if you have the condition.
For moderate to severe Sleep Apnoea, the most common treatment is the use of a CPAP device. CPAP stands for Continuous Positive Airway Pressure. This device keeps the airway open during sleep by means of a flow of pressurized air into the throat. The patient wears a plastic facial mask, which is connected via a flexible tube to a small bedside CPAP machine. The CPAP machine generates the required air pressure to keep the patient’s airways open during sleep. The pressure is light, the mask is comfortable and the machine is almost silent. It will not disturb either your or your partner’s sleep. My wife has commented that it is like the waves rolling in from the Atlantic on to a Dingle beach. A more advanced machine, the BIPAP machine, blows air at a slightly higher pressure on inspiration and at a slightly lower pressure on expiration. BIPAP refers to a bi-level or two level device. There are advanced models that monitor the patient’s breathing to ensure proper treatment. This is called a VPAP machine. VPAP stands for Variable Positive Airways Pressure This device measures the period of time for inspiration and for expiration. Should the user’s normal pattern vary during sleep, the machine will restore the users breathing to normal. Instead of constant pressure it delivers high pressure on inspiration and low pressure on expiration. I am currently using a VPAP machine. Other machines warm or humidify the air if necessary; we don’t all live in the same type of climate.
Occasionally surgical procedures are recommended but this is not common in Ireland. A procedure is carried out to increase the size of the airway. My specialist informed me this seldom works long term but in the USA a clinic claims a 93.3% success rate with this treatment.
Also in the USA dentists have introduced an apparatus that fits inside the mouth at night which gives relief. This device called a “didgeridoo” has met with some success. It is being worked with and improved constantly and up to 40 different device designs are now available.
How to help yourself
Some treatments involve life style changes, such as:
- Losing weight
- Avoiding alcohol or muscle relaxants before sleep
- Quit smoking.
- Clear up any respiratory infections – with medical advice
- Examine what medication you are on, some medications interfere with sleep patterns.
- Try sleeping with the upper body elevated by up to 30 degrees
- Don’t be macho about it – the treatment is simple and offers a whole new and fuller life.
- Do not get over intoxicated – you might not wake up – ever – or you might suffer brain damage if you don’t get oxygen into your body soon enough. Brain cells need oxygen to survive.
Central Sleep Apnoea
I know little other than what I have read about Central Sleep Apnoea. In this condition the basic neurological controls for breathing rate malfunction, and fail to give the signal to the brain to inhale, causing the individual to miss one or more cycles of breathing. If the pause in breathing is long enough, the percentage of oxygen in the circulation system will drop to a lower than normal level and the concentration of carbon dioxide will build to a higher than normal level. Brain cells need constant oxygen to live, and if the level of blood oxygen goes low enough for long enough, the consequences of brain damage and even death will occur. Fortunately, central sleep apnoea is more often a chronic condition that causes much milder effects than sudden death. The exact effects of the condition will depend on how severe the apnoea is and on the individual characteristics of the person having the apnoea.
Complex Sleep Apnoea
This condition is a combination of both Obstructive Sleep Apnoea and Central Sleep Apnoea. It is rarer than the other forms and more problematic to treat.
In the June 2008 edition of the journal Neuroscience Letters, researchers revealed that people with Obstructive Sleep Apnoea show tissue loss in brain regions that help to store memory, thus linking Obstructive Sleep Apnoea with memory loss. Using Magnetic Resonance Imaging (MRI), the scientists discovered that sleep apnoea patients’ mammillary bodies were nearly 20 % smaller than normal, particularly on the left side. One of the key investigators hypothesized that repeated drops in oxygen lead to brain injury. It sounds like a logical argument.
In the USA, the Wisconsin Sleep Cohort Study estimated in 1993, that roughly one in every 15 Americans are affected by at least moderate sleep apnoea. It also estimated that after middle-age as many as 24% of men and 9% of women are affected, many undiagnosed and untreated. In Ireland it is estimated that over 6% of adults suffer from the condition, that’s about 100,000. Many remain undiagnosed mainly due to lack of understanding of the condition and lack of information available to the general public.
The clinical picture of this condition has long been recognized as a character trait, without an understanding of the disease itself. The term “Pickwickian Syndrome” that is sometimes used for the condition was coined by the famous early 20th century physician, William Osler, who must have been a reader of Charles Dickens. The description of Joe, “the fat boy” in Dickens’s novel The Pickwick Papers, is an accurate picture of an adult with Obstructive Sleep Apnoea.
The management of Obstructive Sleep Apnoea was revolutionized with the introduction of Continuous Positive Airway Pressure, the CPAP device, first described in 1981 by Colin Sullivan and associates in Sydney, Australia. The first models were bulky and noisy, but the design was rapidly improved and by the late 1980s CPAP was widely adopted as a treatment for the condition. The Sullivan CPAP is the original and continues to be the Rolls Royce of the device.
There are at least 8 suppliers of the CPAP machine in Ireland. There are different manufacturers, different models and different cost structures. The CPAP device I was renting until recently cost €99.00 per month. I claimed this cost from the Drugs Payment Scheme as between my wife and I we are over the monthly threshold . Purchasing a machine is not recommended as if it gives trouble you are stuck with it, as I was with my first machine. It only lasted 3 years after paying over £800 pounds (at the time) for it. I now rent a machine.
One must purchase the mask but the cost of this can also be claimed from the Drugs Payment Scheme. There is a filter in the machine which should be replaced twice a year, obtainable free from the supplier. For hygiene reasons, the mask should be washed regularly with warm soapy water.
Further Information Online
On the Irish Sleep Apnoea Trust web site every question you are likely to have regarding Sleep Apnoea is answered. There are also other web sites with oodles of information, all worth a visit.
Sleep Apnoea is a condition, not a disease. It is not something you should ignore, hoping it will go away. Diagnosis is simple, treatment is easy. See your GP and ask for a referral to a Respiratory Specialist.