Tips & tricks leakers have shared
There is limited published advice on ways to cope with living with a CSF Leak. Below are some hints and tips which may assist with day-to-day life, but as ever, you should always discuss your condition with your doctor and follow their advice.
The key things to remember are: don’t bend, twist, or lift in any way that makes you strain. These actions engage what is known as a Valsalva Manoeuvre, which puts strain on the Dura (membrane containing the CSF) and can make leaks worse.
Here are some everyday tips and tricks that fellow leakers have shared with us to make everyday living with a leak a little easier. We call them Leaker Life Hacks.
Make Like a Bat
By keeping your head lower than the rest of your body, the volume of CSF around your brain is maintained, which helps reduce symptoms. Your local council, GP or other NHS services should be able to provide you with a hospital bed to enable you to lie with your head lower than the rest of your body, when needed.
Do not bend or twist
Instead ask your local Occupational Therapist to provide ‘grab’ sticks to enable you to pick things up, long handled sponges, shoe horns and sock pullers. Be ever mindful of everyday situations in which you might be forced to bend or twist and adapt as much as possible – for example: where is the toilet paper? Check before you sit on the loo, particularly if you’re not at home! If it is behind you, put it in front of you before you are seated to avoid twisting to reach it. Ladies – attach a long handle to your razor so that you don’t need to bend to shave your legs in the shower and do a leg a day if you’re struggling!
Log Roll Out of Bed
Again this stops you twisting and putting strain on your Dura and leak site. Ask your local physiotherapist to show you how or take a look at this.
Do Not Strain
Avoid lifting anything heavy or straining when you go to the toilet. Again, this can put strain on the Dura making your leak worse. Maintain a high fibre diet and keep well hydrated to avoid becoming constipated.
Listen To Your Body
Try and rest as much as you can. The long-term effect of CSF Leaks are poorly understood so it is best to avoid pushing through your symptoms. Bed rest has also been shown to help with some leaks.
When coughing or sneezing do not try to hold it in. Instead let the air flow unhindered. Holding it in may put strain on the Dura and could make your leak worse. Be mindful of this when blowing up balloons or similar.
Make Mine an Espresso
Caffeine can provide temporary relief of some symptoms. Some sufferers drink a lot of coffee or caffeinated drinks to help with this. Check with your doctor before doing so in case it might affect any other medical conditions you have.
Avoid the Gym
Avoid strenuous activities that might put strain on the Dura – including activities that involve spinal stretches and twists such as Yoga and Pilates unless you have a very well educated teacher that can heavily adapt the moves you carry out in order to make them safe. You could use sports tape along your spine to provide instant feedback as to how much you are stretching. If the tape is being stretched, your Dura will be too. Be aware of the position of your spine if you decide to swim – the awkward angle of your neck if swimming with your head above water when doing breaststroke may exacerbate a leak in the thoracic or cervical area. Opt for gentle activity and stop if your leak ‘declares itself’ in any way.
Gourmet on the slow
Use a slow cooker for making dinner. You can prepare the food early in the day when you are probably feeling your best. Leave pre-prepared tea or coffee mugs on the worktop, so you just need to add water when required.
Lie down on the go
Take a camp bed or yoga mat wherever you go. You can lie down when you need to but still participate in family outings, outdoor fun or other gatherings. Some leakers have made a sign saying: ‘Why am I lying down? Because I have a Cerebrospinal Fluid Leak and my symptoms are greatly worsened when standing!’ to raise awareness and avoid embarrassing or awkward comments and questions, or perhaps carry a copy of our ‘What is a CSF Leak?’ fact sheet when you’re going places to help folk understand.
If you have a long way to travel, consider investing in an inflatable mattress for the car or ask your Occupational Therapist if they can provide one. If you’re heading to a hospital appointment, book patient transport and specifically request a stretcher (it’s free in the UK).
Also when travelling, take a ‘survival kit’ with you, tailored to your individual symptoms. Sick bags, anti-nausea medication, ear plus, sunglasses, a flask of coffee etc.
Medical Accommodations Cards or Medical Alert
Consider carrying one of our medical accommodations cards or an emergency MEDICAL ALERT! card with detail of contacts on the back in case you get into difficulties. iPhone and Android smartphones also have a medical alert button on the passcode page, where you can store emergency details that can be accessed without actually accessing the phone. More info here.
Keep essential items close when lying down or resting to avoid having to keep getting up. Your phone, a drink, the remote control, a snack, a notebook and pen.
Take Out to Take In
If you can, invest in home delivery for your food shopping. The big supermarkets run brilliant offers to cut the cost of this. You can plan your meals and do your shop in your own time – you can save the contents of your ‘trolley’ and add to it when you are feeling up to it. When it is delivered, make the most of the helpful delivery drivers and have them bring the shopping into the house and put it on a surface where you can limit how much bending you have to do.
Let it Out
Find something to help you relax or vent. Adult colouring is all the rage at the moment, and it can be very relaxing. You can keep a diary or start a blog to vent, share information or to jot down your thoughts. There are numerous apps available to keep your mind active and of course the ever-faithful Netflix for box sets (other internet-based providers are available!). Listen to relaxing music or meditation music, or sign up to Audible where you can pay to download audio books.
Last reviewed: 2021