Headaches are fairly common in NPH: one research study showed that 36% of people with NPH experienced headaches several times a month. Head pain is something our members do often report, but the cause is not always the same. It’s important to try and figure out what might be causing your headaches to figure out ways to help prevent and/or treat them. Keeping a headache diary can be a useful way of spotting patterns in your headaches to figure out what might be triggering them and what some solutions might be.
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Here are some possible causes of headaches that you might experience with NPH:
If you have a new programmable shunt fitted or your settings are adjusted, it can take a while to become comfortable with the way the new pressure feels. You may experience more headaches in the weeks or months after a new fitting or adjustment. Pain management medications and techniques such as cognitive behavioural therapy (CBT) can help you become more comfortable with the changes.
Shunts can sometimes remove too much cerebrospinal fluid (CSF) from the ventricles, this is known as over-drainage and can cause low pressure headaches. Low pressure headaches will usually come on when standing up for long periods of time and will usually be helped by a glass of water and lay down. Because gravity affects the way shunts work, their function is affected by the positions we’re in. Shunts don’t drain upside down, drain less well lying down flat, and drain more readily the more upright we are.
If you find you feel ok in the morning but a headache builds as the day goes on, this could potentially relate to over-drainage. We recommend speaking to your GP about a neurosurgery referral if over-drainage is suspected. If you have a programmable shunt the settings may need to be adjusted. Unfortunately though, low-pressure headaches caused by over-drainage aren’t always easy to fix. Anti-siphon devices can be added to existing shunts to try and reduce the siphoning effect of being upright where too much fluid is drained. There is a type of shunt called a gravitational shunt that can help – it has one setting for standing and another for laying down again with the aim of reducing the siphoning effect when standing.
If you lose lots of weight you may need your shunt adjusting to compensate for reduced abdominal pressure and to prevent over-drainage.
Exercise can also lead to over-drainage and head pain. Exercise increases blood flow to the brain. The extra blood takes up space which can cause the shunt to drain too much CSF, causing headaches. Build your exercise levels up gradually over time and keep well hydrated to help prevent over-drainage head pain on exercising.
Subdural haematoma (SDH) is a potentially serious complication of shunt surgery in NPH and one of the symptoms can be a severe headache. The blood vessels and brain tissue of older people and of those with NPH are fragile due to changes in the compliance (springiness) of the brain as we age and as part of how NPH develops. Reduced pressure in the brain caused by a shunt can pull the firm brain tissue away from the surrounding blood vessels. This leads to bleeding into the subdural space around the brain. The haematoma that forms puts pressure on the brain causing the following symptoms:
If you experience these symptoms then you should urgently attend accident and emergency for assessment and treatment. Take your Shunt Alert Card and Hospital Passport if already completed but do not wait to fill them in if not.
The highest risk for SDH is in the immediate postoperative period and the first 3 months. It’s rare for it to occur outside of this window, especially with programmable shunts, but it’s worth just being aware of symptoms.
Treatment for SDH may involve making a hole in the skull (Burr hole) to relieve the pressure.
Headaches can be a symptom of dehydration. Dehydration is usually caused by not drinking enough fluid to replace what we have lost. We lose fluid all the time just by breathing, sweating, and going to the toilet. There are different reasons why people with NPH may be more prone to dehydration: memory problems associated with NPH can make it difficult to remember to keep drinking throughout the day; mobility issues might make it more difficult to make or get drinks; and bladder leakage sometimes means people want to drink less to try and stay dry. However, this can make the leakage worse, as the concentrated urine can irritate the bladder, and not filling your bladder regularly can reduce how much it holds.
Keeping a fluid diary alongside your headache diary can help identify if headaches are being caused by dehydration.
Download the Shine Fluid Diary
Lots of things can contribute to dehydration: the temperature, humidity, the amount we exercise or otherwise exert ourselves, and the amount and types of drinks, (for example, alcohol and caffeine consumption) and the food we eat. We can also become dehydrated by illnesses that cause fluid loss through vomiting and diarrhoea, or sweating from a fever. Having diabetes also increases the risk of dehydration.
People sometimes worry that the CSF being drained by their shunt needs to be replaced by drinking equal volumes of extra water. This is not necessary, the fluid removed from the head is reabsorbed into the bloodstream.
Some tips to keep hydrated:
Good sleep is important for everyone, and can help prevent headaches due to tiredness. There’s a theory and some evidence that during sleep our brains flush out toxins that accumulate during the day so your brain is then bathed in fresh fluid, this process is thought to help protect brain health. Our members with NPH sometimes report having difficulty sleeping, the NHS Every Mind Matters website has good information on how to sleep better.
Headaches and grogginess in the morning could also be a sign of sleep apnoea, a condition where obstructed breathing at night means carbon dioxide builds up in the blood instead of being exhaled. This leads to swelling of the brain, with feelings of grogginess, brain fog and headache. Other symptoms include: tiredness, snoring, tossing & turning, stopping breathing during sleep (something you may not know about but someone else may notice), waking gasping or choking in the night, awakening with a dry mouth or sore throat in the morning. Lots of body systems are impacted by sleep apnoea including the brain, the cardiovascular and immune systems. We have a page about sleep apnoea on our website where you can read more about it.
If you think you might be experiencing sleep apnoea symptoms then see your GP to be referred for assessment in a sleep clinic. The treatment is usually very effective. Continuous Positive Airway Pressure, or CPAP, involves wearing a mask that delivers a steady stream of air to keep your airway open while you sleep. If the head pain you experience is due to sleep apnoea the CPAP treatment should resolve it.
As we age our visual acuity (how well our eyes see) can change. Annual eye tests at the opticians can make sure you keep up with and correct any changes with the right prescription glasses or contacts. If eyesight that needs a prescription goes uncorrected, you may find you have blurred vision and headaches, as your eyes must work harder to see.
When you’re managing a lot of health appointments already, and if you do have memory problems with NPH, it can be difficult to remember to keep on top of more routine appointments like eye tests. It might be helpful to ask the optician to send you appointment reminders, and/or to book the appointment around a memorable date e.g. your birthday.
Using glasses rather than contacts is likely to be safer if you do struggle with memory problems and might forget to take them out: contact lenses can cause infections if left in the eyes for too long. Having your glasses on a string may help if you are prone to losing them.
If you regularly use screens - computers, mobiles, tablets, take regular ‘eye breaks’, 20:20:20 is a good rule to remember – every 20 minutes look at something 20 feet away for 20 seconds.
Typically this is a constant pain on both sides of the head, neck or face, sometimes behind the eyes. It may feel like squeezing, like something is pressing on your head or being tightened around it. The affected area may be tender and your head may hurt more when touched. It can last anywhere from around 30 mins to several days.
The pain can be caused by posture and muscle pain, eye-strain, tiredness, dehydration, noise, tooth clenching/grinding.
Depending on the cause, exercise, such as yoga or Pilates can be effective. You may need physiotherapy if it’s caused by a particular weakness, imbalance or instability. Massage and hot or cold packs can also help by relaxing the muscles and releasing tension.
Painkillers such as paracetamol or anti-inflammatory such as ibuprofen may also help. Amitriptyline is also sometimes prescribed to help prevent tension headaches but takes time to work.
Temporomandibular joint pain from tooth grinding / clenching can be relieved with a nightguard from your dentist.
Migraines are severe, debilitating headaches, where the blood vessels in the brain release chemicals that cause inflammation and pain. There’s no evidence that migraines are more common in those with NPH but it is a relatively common condition in all people.
Migraine headaches may be associated with other neurological symptoms, such as temporary paralysis on one side of the body, or altered sensation, taste, or smell. Some people experience visual disturbances known as aura which might be flashing lights, sparkles, or wavy lines. Blind spots or loss of vision have also been reported, and people can become very sensitive to light, sound, and smells. Ringing in the ears known as tinnitus sometimes occurs. Nausea and vomiting are also common.
The causes of migraine aren’t well understood. There are lots of medications that are used to treat migraine, including triptans and propranolol. There is no easy way to predict which treatment will be most effective for you, so trial and error or trial and improvement is the most common approach. Usually you’ll need to try a medication for around three months to be able to tell if it’s working. This can be frustrating, but because everyone is unique, just trying different approaches is the only way to find the one that works for you.
The brain can change throughout our lives in response to our experiences through neuroplasticity. If pain lasts a long time, new pathways in the brain are formed, and the longer the pain lasts the more ingrained it becomes. Pain becomes chronic once the brain and body have learned to stay in pain. The treatments for chronic pain are often different to acute pain, e.g. pain from an injury because what’s happening in the brain is different.
If you take painkillers for headaches on more than half of all days, you may find you start getting headaches when you then don’t take medication. These are called rebound headaches. Once this vicious cycle begins, it can be difficult break and you essentially become dependent on the painkillers. We advise getting medical support to help you manage your pain while weaning off your medication.
It's not always possible to get rid of pain completely, but the goal of most chronic pain management programmes is to help you find ways of getting on with your life. Ways to do ordinary activities, rather than pain always dictating what you do or don’t do.
Managing anxiety, learning to properly pace yourself and setting goals regarding your everyday life are as important as medications in your treatment. Most dedicated Pain Management Services will have a Psychologist, referral to one does not mean your doctor thinks you are imagining your pain. They know your pain is real, they want to help you to cope with it.
Shine has an online pain management course. If you think you might be interested contact First Contact (firstcontact@shinecharity.org.uk or calling 01733 555988) and ask to be referred to the Health Team for more information.
There are also specialist organisations that have lots of good information on chronic pain e.g. Action on Pain, British Pain Society, and Pain Concern.
You can view our information session video on Head pain and NPH here.