Rare Disease Day: My Battle with IIH

Feb. 28, 2022 is Rare Diseases Day. For people with rare diseases, it is a time to recognize everything we go through on a daily basis. Personally, I have a rare disease called Idiopathic Intracranial Hypertension, (IIH) which is also known as a Pseudotumor Cerebri. I want to raise awareness for this headache of a disease (literally) so that more people might understand what we go through. 

According to rarediseases.org, the incidence rate for this disease (how many people it occurs in) is 1 out of every 100,000 people. Specifically, this disease is mostly seen in females who are of childbearing age, but it can occur in anyone. Basically, IIH is an overproduction of cerebrospinal fluid which causes an increase in intracranial pressure. (pressure within the skull) 

In terms of symptoms, this overproduction of fluid can cause two main issues, both of which I have experienced. First, it causes severe headaches. IIH is most known for headaches that are so intense you want to drill into your own skull to get the fluid out. The more severe issue is problems with vision. Before I was diagnosed, I went to the eye doctor in June 2020 because I was experiencing double vision, blurry vision and difficulty with peripheral vision. When I went to the optometrist, she found my optic nerves to be extremely swollen and if I continued on this path, I would have gone blind in a few weeks. The doctors sent me to the emergency room where I was admitted for testing. 

After multiple spinal taps, MRIs, x-rays and blood tests, the neurologist and optometrist worked together to diagnose me as having IIH. To “fix” this issue, they told me I had to start losing weight — and fast. For many, gaining weight can be the reason why they discover their IIH. After being in the hospital twice, I got an appointment with a specialist in Philadelphia called a neuro-opthamologist. She prescribed medication to help reduce the fluid in my head and did lots of different eye tests to track the swelling in my eyes. 

It’s been a long road, but my swelling has finally gone down and I have become an advocate for people who suffer with IIH. If you are ever experiencing these symptoms, I strongly urge you to see a doctor as soon as possible! There are other less common symptoms, like neck pain and there are symptoms that are related to having a chronic illness, like exhaustion. 

Dealing with a chronic disease can be difficult every day. Here are some self-care ideas for those with chronic issues (or anyone!): 

• Take time to rest: Rest is SO important for those with chronic illnesses. It’s so important to take care of yourself.
• Practice Mindfulness: One way you can take care of your mental well-being is by practicing mindfulness. This can be as simple as a 1-minute meditation video, or by exercising gratitude.
• Do Yoga: Yoga can be very relaxing and a great way to stretch out your body. Check with a doctor before doing physical activity. 

Hally Everett is a fifth-year Media and Culture major with minors in Health Sciences and Entrepreneurship. HE885418@wcupa.edu