I am 1 to 3 in 100,000 with IH. I am this statistic. IH is a rare disease, which is why it was so difficult to diagnose.
Pseudotumor Cerebri – is a process affecting the brain that appears to be — but is not — a tumor. (From http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001391/)
Pseudotumor Cerebri was the first “guess” of a diagnosis I got. The name has since changed to Intracranial Hypertension. The description of IH is: a condition in which there is increased pressure inside the head without any obvious cause. This generally results in swelling of the optic disc (the point where the optic nerve meets the eye). The swelling in turn causes a potential threat to sight. The condition occurs most commonly in young women who are obese.
Symptoms include (and whether I experienced them):
1. headache – YES
2. Blurred vision – no
3. Buzzing sound in the ears (tinnitus) – yes
4. Dizziness – yes
5. Double vision (diplopia) – no
6. Nausea – can’t remember, but I don’t think so
7. Vision loss – Didn’t have any
8. Symptoms worsening during physical activity, and bending – YES
So I had one normal brain MRI showing no tumors. My neurologist sent me for a lumbar puncture (spinal tap). She was convinced it could NOT be IH because I did not have the visual disturbances (Papilledema). I was completely FREAKED out about the lumbar puncture since I had just had back surgery and someone touching my hypersensitive wound area was still off limits – nevermind putting a giant needle into it?! I managed to convince them to sedate me for this. At this time, I made an appt. with Dr. Wonderful so I could convince her that the headaches and tinnitus were symptoms of anxiety alone, and there was nothing wrong with my brain. She said clearly I was anxious, but she was also sure that my headaches were not just anxiety.
So then I scheduled my outpatient surgery which was last February. My opening pressure at the time of my tap was 26 which was abnormal. Normal opening pressures according to: https://umem.org/pearl_view.php?p=1397 are:
“Strictly speaking, normal range of CSF pressure is 8 to 21 cm, but obesity can increase it up to 25 cm and still be considered normal. Thus, while the significance of measurements between 20 and 25 cm in obese patients may be unclear, levels above 25 cm are always abnormal.”
My diagnosis was Intracranial Hypertension – or pesudotumor cerebri, and my treatment was acetazolemide (Diamox), and fioricet for the pain.