Our Neuro Network

09/17/2026

When we talk about a CSF leak, location matters.

Is it a cranial CSF leak or a spinal CSF leak?

They can present very differently.

A spinal CSF leak often makes us think of the classic orthostatic headache — worse upright and better lying flat.
But a cranial leak happens around the skull base.

One clue can be a persistent clear, watery drip from one side of the nose, sometimes noticed more when bending or tilting the head forward. Some people describe a salty or metallic taste at the back of the throat.
Why?

A small defect in the skull base can allow cerebrospinal fluid — the fluid surrounding the brain — to escape into the nose.
But an important point:

A runny nose does not automatically mean a CSF leak.

Allergies and other nasal conditions are far more common.
It is persistent, unusually watery, often one-sided drainage — particularly when there has been head trauma, sinus/skull-base surgery or other concerning symptoms — that deserves investigation.

And interestingly, spontaneous cranial leaks can sometimes be associated with raised intracranial pressure, rather than the low-pressure picture we commonly associate with spinal leaks.
Same fluid.
Very different locations.
Very different clues.

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.
If you’re a healthcare professional, please repost.
Awareness saves lives. 💙

09/15/2026

08/31/2026

Do continuous glucose monitors (CGMs) impact hyperinsulinism (HI) care?

✅ Among participants currently using a CGM:
🔹 82% reported that CGM data led to adjustments in their treatment plan (e.g., medication dose/timing, prescribed feeding schedule) and/or daily routine (e.g., snack before activity, avoiding certain activities).

✅ Hypoglycemia prevention actions:
🔹 84% take at least one preventive action every day (e.g. eating food and/or taking medication to prevent a low)
🔹 40% report an average of four or more preventive actions daily

These findings show how CGMs can play a key role in managing HI and preventing dangerous lows.

These insights and more are featured in our 2025 HI Global Registry Annual Report, available at https://congenitalhi.org/higr-annual-reports-and-publications/

What is HIGR? It’s the only patient-powered hyperinsulinism (HI) registry, and your input drives critical research.

Not registered yet? It’s not too late to share your experiences and feel the power of your data! Learn more at higlobalregistry.org at the link in our bio and sign up today.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/26/2026

Please follow the CSF Leak Association - The Cerebrospinal Fluid Leak Charity and share their posts to spread awareness of CSF leaks, a TREATABLE cause of brain sag dementia.

Early diagnosis and intervention is life changing and lifesaving.

I started Our Neuro Network because it happened to my family. It can happen to anyone. If it happens to you or yours, we are here for you as a community.

08/25/2026

Ask five people with Usher syndrome how they found out, and you’ll hear five different stories.

That’s because Usher syndrome doesn’t follow one script.
With type 1, babies are typically born with severe to profound hearing loss. They may also have balance differences that can delay sitting or walking. Vision changes often begin during childhood or the teen years. These changes are caused by retinitis pigmentosa (RP), an eye condition that leads to progressive vision loss.

In type 2, hearing loss is also present at birth, but balance is usually unaffected. Vision changes from RP tend to begin later, often during the teen years or early adulthood.

Type 3 can look different again. Hearing and vision loss usually begin later and get worse over time. Some people may also develop balance problems.
Usher syndrome can look different from person to person, even among people with the same type. That’s why hearing, vision, and genetics specialists may all play a role in connecting the dots.

However your diagnosis unfolded, it’s real. It’s valid. And it’s only the beginning of your story.

This kicks off a five-week series on the science behind USH. Next Friday: What does it take to turn a suspected diagnosis into a confirmed one?

ID: Graphic with white background, bold navy text, DNA helix images upper right and lower left. USH Awareness Day logo bottom right.

08/25/2026

08/24/2026

"Representation helps patients feel seen, understood & confident in the healthcare system. When patients encounter physicians from a range of backgrounds, it reinforces that excellence in medicine is inclusive." -Kendrick Johnson

08/24/2026

I am deeply grateful for my colleagues at the Society of NeuroInterventional Surgery for their mentorship, inclusion, support, advocacy, and compassionate, knowledgeable care of those of us living with cerebral venous and CSF disorders. I am honored to be part of a community that co-creates a sustainable future filled with hope and evidence-based progress.

Aloha, SNIS! Meet Tiffany Hoke, DNP,AGACNP-BC, SCRN, CNRN joining us from Hawaii! She says that living with a rare, inherited neurometabolic disorder and complex cerebral venous and CSF disorders has profoundly influenced her approach to patient care. Her years as a healthcare provider and a patient have reinforced that listening, validating patients' experiences, and partnering with them in decision-making are just as important as technical expertise.

08/23/2026

On the cover this week, a new Lancet Editorial examines the deteriorating state of LGBTQ+ rights globally and its implications on health.

Read this & more in our latest issue: http://spkl.io/61877OX6N

05/18/2026

Ketogenic diets can be transformative for some neurological and metabolic conditions, but they are not metabolically neutral for everyone.

My own experience showed a dramatic rise in LDL-C and non-HDL cholesterol after starting a ketogenic diet, despite favorable triglycerides and HDL levels. Rather than abandoning the approach immediately, I adapted. I shifted toward olive oil, avocados, nuts, seeds, and fatty fish while reducing saturated fat and dietary cholesterol intake. I cut out half-and-half, whipping cream, and many cheeses. When I do have cheese, I enjoy high protein Parmesan as a flavorful treat with a zing. I stopped using MCT oil daily to maintain ketosis, and use it as a support for hypoglycemic periods on instead (rapidly converted to glycogen in liver). Over time, my lipid profile improved substantially, and will continue to normalize.

This phenomenon is real. Some individuals experience marked increases in LDL-C on ketogenic diets, potentially related to altered lipid trafficking and intestinal sterol hyperabsorption. Monitoring matters. Personalization matters. Physiology matters.

The goal is not ideology and a one size fits all approach. The goal is individual neurometabolic optimization and homeostasis.

Keto may help one system while stressing another. Understanding that balance, measuring biomarkers, and making individualized decisions with your healthcare team is how we move toward precision medicine instead of one-size-fits-all nutrition advice.

I am grateful my lipids improved with adaptation and prioritization of healthy fats, as my brain’s fuel system is much more stable on a ketogenic diet when compared to a standard American diet, which caused hypothalamic obesity and worsening hypoglycemic unawareness in the setting of my autosomal dominant MC4R deficiency.

Knowledge. Awareness. Action.