Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
In December, they put me in the hospital over night thinking something was wrong with my shunt, thankfully it was ok. However, the neuropsych came in and told me my brain was basically "wigging out" causing head pain. For at least the short term, they put me on narcotic pain meds and encouraged me to rest and relax with the hope that by Christmas it should all be finished.
Its now January and things are worse. I have a sinus infection and cough which makes the head pain scream. The dizziness which was only occasional has increased to almost half the time. But I also have a general over sensitivity to any stimulus - light, smell, sounds, touch, etc. this hasn't been a problem before now, but between the pain and over sensitivities I'm really having troubles making any sense!
Does anyone have any guidance on this?
Kristena
Its now January and things are worse. I have a sinus infection and cough which makes the head pain scream. The dizziness which was only occasional has increased to almost half the time. But I also have a general over sensitivity to any stimulus - light, smell, sounds, touch, etc. this hasn't been a problem before now, but between the pain and over sensitivities I'm really having troubles making any sense!
Does anyone have any guidance on this?
Kristena
I cannot tell that the neurologists have any clue that we have these symptoms, and that they are related to ICP. your description makes me think that your shunt is not working. did they measure your OP again, and what is it?
my theory is that as the ICP goes up, that excess CSF pressure is drained out through the lymphatics along the cranial nerves. these nerves serve our sight, hearing, balance, smell, and autonomic nervous system. also motor and sensation of the face and head. when it affects our vision, they can measure it and so they look at papilledema. the other stuff is there too but they just can't see it to measure it, so they think it doesn't exist.
I am a lot better after my jaw surgery but my sensory hypersensitivities persist. loud noise is like being stabbed with knives. smelling chemicals is like being suffocated. I don't have a good solution for it. I carry earplugs and a mask with me everywhere I go.
I've also noticed a couple things that make the pain worse - lifting things, singing, drinking from a straw (that's new, just started today), coughing and sneezing (of course). I really do not want to call the neurologist and tell him I'm in pain, that gets pushed aside, but I'm also starting to get worried.
the other piece to this is that your ICP may be higher now because of increased sleep apnea due to the sinus infection. the shunt ought to be dealing with that, though.