CSF Leak Association - The Cerebrospinal Fluid Leak Charity

CSF Leak Association - The Cerebrospinal Fluid Leak Charity The CSF Leak Association is a registered charity and SCIO (Charity No.

The CSF Leak Association is a registered charity in England & Wales (1210442) and Scotland (SC046319) working to raise awareness of cerebrospinal fluid leaks, support sufferers and their families, and secure diagnostic and treatment advancement csfleak.uk SC046319) working to raise the profile and promote awareness of cerebrospinal fluid (CSF) leaks. A CSF leak is a serious and often incapacitating medical condition stemming from a tear or hole in the membrane (the dura) that contains the fluid surrounding the spinal cord and brain. It can occur in the head or spine as result of trauma, surgery, an underlying disorder or spontaneously. Research shows that at least 5 in 100,000 people each year are affected by spontaneous CSF leaks, and many more from iatrogenic CSF leaks. They not rare, yet are generally underdiagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is common place, and on average correct diagnosis takes 13 months from onset. Whatever the circumstances and severity of the symptoms, a CSF Leak is painful, debilitating and life-changing. There is very little awareness amongst the general public and very little support for those in need. If you're looking for information about CSF Leaks, perhaps because you suffer or suspect that you may be suffering from one, or you're a health professional investigating diagnosis or treatment options for a patient, please visit our website for more information: www.csfleak.uk

09/10/2026

New in Cephalalgia!
Headache is common in patients with joint hypermobility but often overlooked. This review highlights links with migraine and secondary causes such as intracranial hypotension and craniocervical instability..................
Joint hypermobility is frequently underrecognized in patients with headache.
•
Migraine is the predominant primary headache phenotype, but secondary headache disorders should be systematically considered.
•
Headache assessment should incorporate musculoskeletal, autonomic, and systemic evaluation.
•
Management should be individualized, integrating standard headache care with management of hypermobility-related comorbidities and secondary headache disorders.
https://journals.sagepub.com/doi/10.1177/03331024261477381

09/10/2026

" It seems it will take a brave woman to undertake public lying down. I intend to be her. I will not be disappeared" Liz Crow

Why can a CSF leak affect your hearing? 👂It can feel like being on a plane that never lands.Muffled sounds. Ringing. Ear...
08/10/2026

Why can a CSF leak affect your hearing? 👂

It can feel like being on a plane that never lands.

Muffled sounds. Ringing. Ears that feel full.

Here's why 👇

Deep inside your ear is a tiny snail-shaped tube, called the cochlear.

It's filled with fluid, and that fluid helps you hear.

A very thin channel links this ear fluid to the fluid around your brain (CSF).
When CSF leaks, the pressure around your brain drops.

The pressure in your ear fluid can drop too, effecting the hearing

So sounds go muffled, or you hear ringing or whooshing.

On a plane, yawning or swallowing pops your ears.

This is deeper inside the ear, so popping doesn't help.

Many people notice it's worse when standing and better lying down.

💡 New ear symptoms + a headache that eases when lying down?
Tell your GP about both, together - its even better if you print the guidelines from our website and take it to your GP.

Have you noticed changes in your hearing? Share below 👇

07/10/2026

Maybe its a migraine, but what if its not?

One of the most common misdiagnosis of a CSF leak is a migraine, why?

Because most patients with migraines also feel better when lying flat. Thats why we ask professionals to look beyond the headache and ask about other symptoms.

How is your hearing, any tinnitus, ringing, amplified or muffled hearing?
Vision - photophobia, sensitivity to light?
Palpitations, nausea?

Look beyond the headache.

Exactly how much coffee is in each drink?A latte, an espresso, a cup of tea… they’re not all equal.If you live with a CS...
06/10/2026

Exactly how much coffee is in each drink?

A latte, an espresso, a cup of tea… they’re not all equal.

If you live with a CSF leak, you may have been advised to try caffeine to help ease your headache.

But how much caffeine is actually in your cup?

CSF leak association breaks it down for you! 👈

Caffeine may offer temporary symptom relief, but it doesn’t seal a CSF leak. 💙

Who did we meet this weekend?We attended the National Headache Academy, joining over 300 healthcare professionals with a...
05/10/2026

Who did we meet this weekend?

We attended the National Headache Academy, joining over 300 healthcare professionals with a shared interest in understanding headaches better.

We spoke with doctors, nurses and many other helathcare professionals from primary and secondary care about CSF leaks, how they can present, and what might help distinguish them from other causes of headache.

It was lovely to see so much curiosity.
People stopping, asking questions and taking the time to learn.

For us, that’s why being there matters.
We want more clinicians to think of a CSF leak when they meet a patient whose symptoms fit.

Thank you to everyone who came over for a chat. A busy weekend, and a very worthwhile one.

03/10/2026

Headache Conference at the Royal College of Physicians in London.
Raising awareness amongst healthcare professionals.

Anyone attending? drop in and say hi .... would love to see you!

CSF Leak Association - Raising awareness

Brain Fog and CSF Leaks: Why Can Thinking Become So Difficult?“I know what I want to say — but I just can’t get my brain...
01/10/2026

Brain Fog and CSF Leaks: Why Can Thinking Become So Difficult?

“I know what I want to say — but I just can’t get my brain to work properly.”

People living with a CSF leak sometimes describe one of their most frustrating symptoms as brain fog.

They may say:
“I can't concentrate.”
“I keep forgetting words.”
“I have to break simple tasks down into steps.”
“My thinking feels slow.”
“I can read something, but it doesn't seem to go in.”

So what is actually happening?

What is brain fog?
“Brain fog” isn't a formal neurological diagnosis.
It is a useful description for a group of cognitive symptoms affecting the way the brain processes information.

These can include:
- difficulty concentrating
- slower thinking
- problems finding words
- forgetfulness
- reduced mental stamina
- difficulty multitasking
- problems planning or organising
- feeling mentally overwhelmed by tasks that were previously easy

Neurologically, we might describe some of these difficulties as changes in attention, processing speed, working memory and executive function.

And importantly, cognitive symptoms are recognised in spontaneous intracranial hypotension caused by spinal CSF leakage.

Perhaps the simplest way to explain it is this:

Your brain hasn't forgotten how to think.
The physical environment in which it normally functions has changed.
A CSF leak can alter the support, pressure and positioning of structures inside the skull. For some people, this seems to interfere with the brain's ability to process information efficiently.
So instead of thoughts arriving quickly and automatically, everything can feel as though it requires more effort.
And that experience has a name patients understand very well:
brain fog.

You’ve probably never heard of a CSF leak — I hadn’t either, until I had one.
It’s when the brain fluid leaks, causing severe headaches that ease when lying flat. Many go years undiagnosed.

Please repost - Awareness saves lives. 💙

CamRARE’s RARESummit is back for 2026 with another packed programme.The day has been designed to be as interactive as po...
30/09/2026

CamRARE’s RARESummit is back for 2026 with another packed programme.
The day has been designed to be as interactive as possible, including panel discussions, presentations, workshops, exhibition stands and posters, covering important topics from partnerships to rare care and health data. As always living with rare is at the heart of RARESummit with Individuals and parents sharing their experience.
Starting the day with a UK policy panel, and ending with a forward looking innovation discussion, Wednesday 7 October promises to be an engaging day.

Check out the programme and book your tickets to join in person or online:
https://www.camraredisease.org/raresummit26-programme/

Address

Unit 110982, PO Box 26965
Glasgow
G19BW

Website

,

Alerts

Be the first to know and let us send you an email when CSF Leak Association - The Cerebrospinal Fluid Leak Charity posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Featured

  • Mo's Trust

    Mo's Trust

    54/Queen Mary Avenue Govonhill Glasgow

Share

Category