Disclaimer: While I talk about my own experience, and information based on my own research, and offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.

For my full disclaimer policy, go here.

September is Idiopathic Intracranial Hypertension (IIH) Awareness Month, so for the entire month, I’ll be writing exclusively about IIH to help spread awareness of this rare neurological condition.

After suffering from migraines since I was a teenager, one day I got a headache that was undoubtedly different and much more intense. It left me unable to turn my head from side to side, and it felt like someone was trying to crush my skull from the inside.

Two months later, I was diagnosed with Idiopathic Intracranial Hypertension, and my life changed forever.

This was in 2018. 4 years later, my life looks entirely different. I quit working full-time and have since become a Life Coach who specializes in helping people with chronic illnesses. My mission is to help them learn to find meaning in their lives and thrive with personal growth tools and techniques created with their unique challenges in mind.

In this blog post, I’m explaining IIH to help spread awareness and information about this rare condition, but to also help give an understanding of what types of challenges I myself face. 

Through my posts about IIH this month, I want to help others with similar struggles not feel so alone, and to show that finding tools for personal growth and self-care is possible – and even necessary – to live a life by design, not by diagnosis.

Let’s start with the basics:

What is Idiopathic Intracranial Hypertension?

Most people haven’t heard of IIH, and are unaware of the complications that can come from it.

Idiopathic Intracranial Hypertension (IIH) is a neurological condition caused by excess cerebral spinal fluid (CSF) buildup around the brain. 

Normal CSF levels are between 8-20cm. IIH is typically diagnosed when CSF levels are measured at 25cm or over.

IIH is a rare condition affecting only 1 in 100,000 people.

The term “idiopathic” means that there is no known cause. And since there is no known cause, there is no cure for this chronic condition.

Because of this, IIH is often misdiagnosed, mistreated, and mismanaged.

IIH is a life-long condition

IIH is not fatal, but the treatments and surgeries some will endure can have fatal complications.

Treatments typically include heavy diuretics and frequent spinal taps, and in severe cases, surgeries are required to place shunts or stents in the brain to help drain the CSF into sacks inserted into the stomach.

Each treatment comes with its own risks – some obviously riskier than others.

Whether treated with medications, surgeries, or self-management, IIH is something that is chronic and lasts a lifetime.

What are the common symptoms of Idiopathic Intracranial Hypertension?

Idiopathic Intracranial Hypertension is more than “just a headache”.

Symptoms can be similar to those of other conditions, making getting a proper diagnosis a difficult and lengthy process.

Now that I know more about IIH and the common symptoms, I know that I’ve been feeling the effects of it since I was in my early 20’s – that’s over 15 years without a proper diagnosis.

Symptoms can include:

• headache
• dizziness
• nausea
• vomiting
• tinnitus
• vision and hearing  impairment and/or loss
• rhinorrhea
• stiff muscles in the back and neck
• chronic fatigue
• parathesia

I remember complaining to doctors before about how I feel “sinus pressure headaches” all over my head, how I lose my vision and hearing if I stay bent over for too long, and simply being told that “sinuses are only in the front of your head” and having the rest of my symptoms brushed off.

The stigma around IIH and why spreading awareness is important

Doctors tend to believe that Idiopathic Intracranial Hypertension is more prevalent in young women of childbearing age who are overweight, but there has been no proof of this.

This stigma actually creates barriers for patients with IIH, causing healthcare providers to focus more on weight than on actual treatment and research for this condition – especially since children and men are also susceptible to this condition.

In addition to the stigma, since symptoms of IIH so closely resemble those from other conditions, diagnosis is often delayed (like it was for me) or missed altogether.

That’s why it’s so important to continue to spread knowledge and awareness about this chronic condition. 

How you can support people with Idiopathic Intracranial Hypertension?

It can feel challenging to want to help other and not know how. 

One of the easiest and most impactful ways to help spread awareness of this condition is to share this post and the included graphics with your friends and family on social media.

And, if you have the inclination and financial means, consider making a monetary contribution to the Intracranial Hypertension Research Foundation. Donations are tax deductible and help fund research and support for people with IIH and their families.

How I can support you as you deal with chronic illness

Whether you’ve been diagnosed with IIH yourself, or you struggle with another type of chronic illness, I’m here to support you.

One way I can do that is by offering you something to help combat the tough emotions and intrusive thoughts that come from being a spoonie & living with chronic illness.

Below you’ll find a form where you can sing up for affirmations crafted specifically to address some of the most common & challenging thoughts and emotions spoonies are faced with.

You’ll also be added to my weekly newsletter, where I share more of my own personal experiences as well as tips & tricks for living well with chronic illness.

Until next time,

Do you struggle with intrusive thoughts

about living with chronic illness?