Benign Intracranial Hypertension: A Misnomer (My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri)

Member Name: RPope

Product:	My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri
Date:	23/03/05 (785 review reads)
Rating:

Advantages: New appreciation of vision

Disadvantages: Vision loss, Headaches, Lack of awareness of this disease

As a sufferer of idiopathic intracranial hypertension (IIH), one of the many names this disease has been given, I find that benign is very far from accurate and misleading when describing the debilitating effects of this disease.
As is all too common with IIH, I had frequent headaches as a young girl. As a young adult the headaches became more frequent. The headaches were located at the base of the back of my head and radiated through my eyes. I frequently complained of stiffness in my neck and shoulders and tinnitis, a “swishing” and pulsating sound in my ear. I went to the doctor’s office on many occasions, but I was advised my symptoms were due to stress (related to work). The headaches became more frequent and more intense. The only relief came when I was asleep, but I would often wake up with the same headache. My eyes burned and watered with these headaches. I noticed throughout these months of increasing symptoms, a slight change in my vision, an intermittent blurriness I chocked up to family history. Everyone in my immediate family wore glasses. I was going to make an appointment with my optometrist after family visiting from out of state returned home. That wasn’t quite how it all worked out. One Wednesday afternoon after we had taken our family to a local amusement park, we had to climb four flights of steep stairs in a parking garage. Upon reaching our floor, the headache I had had all afternoon intensified and I felt as if I was going to pass out. From that time forward, my headache would not go away. I woke up the next morning in pain. My eyes would not stop burning and the headache persisted. My eyes were sensitive to light and the small measure of relief I managed to feel came only when I closed my eyes. The headache persisted. I had no appetite. I made a same day appointment with an optometrist who told me I had bilateral disk edema. An ophthalmologist confirmed this diagnosis and I was referred to a neurologist for an appointment on Monday morning and given Darvocet for the pain. This ophthalmologist was the first doctor to mention pseudotumor cerebri to me as a possible explanation of my pain. I lay in bed all day Friday in pain and ate nothing. My parents, becoming increasing frightened, insisted I return to the doctor. After a lumbar puncture with a CSF pressure of 36 and a CAT scan, I was admitted to the hospital. I had to be fed intravenously because nothing stayed down and the only medication that had lasting effects for my pain was Morphine. I was advised that I would need emergency surgery on my optic nerve in order to save my vision (Nerve Sheath Decompression). I was transferred to a hospital 50 miles away from my regular hospital in order to find a doctor that had performed this delicate procedure. After the surgery on my right eye, I had completely lost my vision. The doctor recommended I have again surgery, this time on the left eye to save my vision. In the span of one week, I had had three lumbar punctures and two emergency surgeries on my optic nerves.
Following the surgeries, I took 500mg of Diamox three times a day and two 5-500mg tablets of Vicodin four times a day. Three months and a severe stomach virus later, my vision returned. I do however have permanent vision loss in my left eye and sensitivity to neon and sunlight. I often wear sunglasses indoors. Had my vision loss not been so rapid, my doctors also advised that I might have needed a shunt implanted in my brain to divert fluid off my brain to my stomach. If my symptoms worsen again, this is still an option for treatment.
While most cases of IIH may not be as severe as mine, this is still a debilitating disease to all who suffer from headaches, fatigue, depression, vision loss, etc. Benign is not a word I would ever associate with what happened to me and other people suffering with this disease. Awareness needs to be raised about this disease within the medical community and the general public. For more information about IIH, check out these websites: www.ihrfoundation.org, www.nanosweb.org, www.aan.com, and www.aao.org.

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