For people that have been in contact with me lately here is what the doctors found. Last Friday (the 21st) the eye doctor found that I have swollen optic nerves and then went on scaring me into making sure I went to the neurologist during Christmas week. The neurologist told me that I have Intracranial Hypertension. My next appointment will be a spinal tap on the 4th of next year.
For people who don’t know what is going on here is details of what is going on with me and the basics of Intracranial Hypertension.
My Health:
I have been having headaches since the start of November. I have been having vision problems; it started in the right eye but in now bothering both. It started as shadows that showed up when I changed posture (worse: when moving from lying down to standing up (getting up in the morning is not fun)). I have lost a lot of my peripheral vision mainly in my right eye but I’m now having some loss in my left eye. I also have been having some other symptoms that are not as common. I don’t have Pulse-synchronous tinnitus. I may started having problems with the disease at 16 when I complained of pressure behind my right eye and had weird results with field vision tests (some showing problems while others showed normal vision or inconsistent problems) but after a clear MRI I ignored it and it went away.
Basics of disease:
I have Intracranial Hypertension (IH); another name for it is Pseudotumor cerebri (“false brain tumor”. It is where the Cerebrospinal fluid (CSF) or the fluid surrounding the brain builds up either because your body makes too much and/or is not absorbing the fluid like it should. This creates high pressure inside the skull. No one knows the cause of the disease and there is no known cure. There are about 12,000 people living in the United States with this disease, or about 1 in 100,000. Most of the cases are obese women who are between 20 and 45. For those women the rate of incidence is 20 in 100,000. But the disease can occur in anyone no matter gender, age, and weight.
The main three symptoms include:
Headache is one of the most common symptoms (90% of patients). The (pressure) headache that accompanies IH is unbearably painful and, most notably, is not relieved by any migraine, conventional headache or pain medication. One of the most serious consequences of chronic IH is vision loss, which can lead to blindness. Visual symptoms due to elevated intracranial pressure can range from grey spots that appear briefly to blurred or double vision to decreased contrast sensitivity and peripheral field loss. They also include “dim-outs,” in which vision is momentarily lost in one or both eyes, as well as total blindness. These symptoms can indicate papilledema (swollen optic nerves). The third main symptom is Pulse-synchronous tinnitus is described as a whooshing, whistling, humming or marching noise heard in one or both ears that is in sync with the pulse. It is also a subjective noise; it can only be heard by the person who experiences it.
Treatment:
There is no known cure, but there is ways to manage it and it can go into remission. Field vision tests are done a lot to see how the pressure is (because vision loss is not always permanent), also because some vision loss is not noticed by the patient. Spinal tabs or lumbar punctures are done to test for the pressure and to relieve pressure temporary. The drugs used for this disease where not made for it but have been seen to work in some cases. Weight loss (plus drugs) can push it into remission in many cases (but most cases are of obese women so go figure). They think that excess weight can slow down absorption of the CSF. There are some surgeries but many have serious complications including permanent vision loss and death.