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This is a guest post written by April Smith of The Thriving Spoonie in honor of Idiopathic Intracranial Hypertension Awareness Month.
About 4 years ago, I was diagnosed with a chronic neurological condition called Idiopathic Intracranial Hypertension (IIH, also known by the now outdated name, Pseudotumor Cerebri).
I had been suffering from migraines since I was a teenager, but one day I got a headache that was just – different. It left me unable to turn my head and it felt like someone was trying to crush my skull but from the inside.
It took about 2 months for me to get a diagnosis, which is actually pretty quick in the chronic illness world! Since that time I’ve been on and off medications and have developed my own methods of coping and living with this chronic neurological condition.
One of the ways I do that is by continuing to spread awareness of IIH and supporting others living with Idiopathic Intracranial Hypertension.
In this blog post, I cover the basics of Idiopathic Intracranial Hypertension and share a bit of my personal journey with it.
What is Idiopathic Intracranial Hypertension?
According to the National Organization for Rare Disorders, “intracranial hypertension means that the pressure of the fluid that surrounds the brain (cerebrospinal fluid or CSF) is too high…primary intracranial hypertension, now known as idiopathic intracranial hypertension (IIH), occurs without known cause.”
Symptoms of IIH can include, but are not limited to:
- Headache
- Blurred vision
- Vertigo
- Tinnitus
- Nausea
- Memory difficulties
- Stiff neck
- Back and arm pain
- Pain behind the eyes (especially when bending over)
- Exercise intolerance
Since this condition is considered “idiopathic”, it means that the true underlying cause is unknown. While there are many theories and indications of various causes, there is not enough information to indicate a specific cause.
Why is spreading awareness of Idiopathic Intracranial Hypertension important?
In the general population, only 1 in every 100,000 people suffer from Idiopathic Intracranial Hypertension. This classifies the condition as rare.
Spreading awareness of Idiopathic Intracranial Hypertension can help educate people about this condition and lead to earlier detection and treatment for those with IIH since this is one of the largest barriers to proper and early diagnosis, because the symptoms of IIH can mimic so many other conditions.
How has Idiopathic Intracranial Hypertension affected me?
Medications did not help me, and actually made me feel worse. Because of this, I’m not currently undergoing any medical treatment for my IIH.
Instead, I rely on my own research, trial and error, and lots of tuning into my body and trying to figure out what it needs on a daily basis.
I also no longer work full-time, I gave that up back in 2018 a few month after my diagnosis. It became clear that full-time employment for me was no longer sustainable mentally or physically.
Since then, I’ve been focused on learning to set healthy boundaries when it comes to my time and energy, and to becoming the best self-advocate and ally for the chronic illness and disabled community that I can.
I already had a background in teaching yoga, and since being diagnosed I’ve expanded my certifications to include life coaching and EFT Tapping. In August of 2022, I launched The Thriving Spoonie to help others living with chronic illness get out of survival mode and learn to thrive despite their diagnosis.
How can you help spread awareness of IIH?
I hope this post has helped you become more aware of IIH, and the importance of spreading awareness. If you want to help share more about this rare & chronic neurological condition, be sure to share this post on your favorite social media platform. You can also connect with me on Instagram where I post *almost* daily about living with IIH and other chronic conditions.
*Thank you April for spreading awareness and sharing your story.*
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