Meet Ashley Carter, a fashionista, creative, and writer. Inspiring us to live “fabellis” but affordably. Thanks to her transparency, she has shared her medical journey leading to the diagnosis of IIH. To learn more, please read her story My IIH Journey: My Story & Diagnosis on her website Fabellis.com.
Her Journey
Ashley’s journey began several years ago. She had an eye exam in 2014 where she was informed that her optic nerves were swollen and an MRI was recommended. Ashley decided to not go through with the MRI at the time as her optometristA trained medical profession who can examine, diagnose, and treat a majority of eye disorders. did not provide an explanation for this test and she was not experiencing visual changes or headaches. It was not until six years later in 2020 that Ashley began to take control of her health and became her own healthcare advocate. She started with an eye exam with a new optometrist where she was told that her optic nerve looked a bit blurry. At this time, she had developed new symptoms such as occasional neck stiffness, lower back pain, and whooshing in her ears (pulsatile tinnitusA whooshing or throbbing noise heard in one or both ears that can range from annoying to debilitating. Highly associated with venous sinus stenosis.).
Fortunately, she found an experienced optometrist who explained the importance of her optic nerve changes and advised her to have an evaluation with an ophthalmologistA specialist in the branch of medicine concerned with the study and treatment of disorders and diseases of the eye..
Her Advice
“Always utilize your dental, healthcare and vision benefits. A lot of people have insurance, but don’t invest the time to go and learn about their health. SO many things can be preventable (…not necessarily IIH, but you know what I mean) if you will first take the step in going and educating yourself on your body/health.”
Next Steps
Her ophthalmologist diagnosed her with papilledemaSwelling of the optic nerve that carries visual signals from the eye to the brain. and idiopathicThe term idiopathic is used when there is no detectable reason for something. intracranial hypertension and she was referred to a neurologistMedical doctor who diagnoses and treats nonsurgical issues related to the brain and nervous system. . The neurologist ordered an MRI of the brain that confirmed a swollen optic nerve. A lumbar punctureA procedure where a needle is placed in the lower part of the spine (the lumbar spine) to access cerebrospinal fluid. was performed with an opening pressure that was elevated at 40 (normal is less than 25). Currently she is under the care of a neurologist and is on diamox with some side effects.
Her Thoughts
While educating herself on IIH and papilledema, she wants to address the misunderstandings about weight and IIH:
“As I’ve started a healthier lifestyle, I don’t feel that IIH is necessarily weight related, but more so related to what we eat. We live in a world of so much processed food with chemicals we likely don’t even know about. I found that eating cleaner and consuming less salt has made a world of difference for me. I have also found that I feel my best when I have meatless days. I’m not quite sure I’m ready to jump into vegetarian or vegan life just yet, but I’m tip toeing on the border. We shall see…
Since I started a healthier lifestyle in October, I have lost 20 pounds so far. I feel a lot better and I’m learning to listen to my body. IIH has taught me so much about myself and that health is truly wealth! I have no idea what the future holds, but I know that with God on my side and me doing my best to live healthier, I believe we got this!”
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