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...

761 Members
8,021 Posts
0 Online
Brain & Nervous System
/ Pseudotumor Cerebri Support Group

Remission...maybe?

Manicuristbaby
Manicuristbaby
So I went to my neuro appt yesterday and he thinks I have went into remission based on the icp monitoring. So of course I'm like I still have all these symptoms the ringing, pressure, dizziness and i felt better on diamox. He told me after discussing with the other doctor they believe that I also have vestibular migraines. Anyone familiar with this? It does sound a lot like me. I know many of us also experience migraines with our IIH headaches I thought I would share. Surprisingly diamox can be used for treatment as well. He can't really explain why my mri/mra showed as bad as it did though for it to resolve so quickly. Heres a link to the info www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/vestibular_migraine.html some of you may have this in combination too.
deleted_user
deleted_user
Remission would be wonderful!! I know it's frustrating to still be in pain, though, when the docs think that you are "all better". What do you mean regarding your MRI / MRA showing bad? What did they see there? It could give clues to underlying causes of your symptoms. I have bilateral narrowing of my venous sinuses and that's what they think is causing my IH.

We have some similar symptoms (ringing, ear pain, head pain, pressure) but I don't have dizziness. Do you have hearing loss? I've got high frequency hearing loss from all this. I'm also very sensitive to sound (can't stand the radio, forks & plate noise, pots & pans - my family has given me big hearing protector muffs like construction workers wear so I can stay in the kitchen during dinner clean-up!)

I'm getting an LP on Wednesday to see where my number is now and since the paps looked better last month, I wonder if the pressure is lower (though the symptoms are much worse than at my dx!) It is certainly a puzzle!

Hugs!
Manicuristbaby
Manicuristbaby
The mrv showed empty sella, increased optic nerve sheaths and small ventricles. The neuro also talked about the stenosis. Now they say things like it is like that maybe from before idk.

Idk about the hearing loss, do I have problems hearing people? It's more like problems understanding but I can hear them. I also haven't taken note of any sound that bothered me except for styrofoam containers rubbing together.

I hope that things work out for you in the best possible way. Isn't it crazy that we have to hope for something to come out poorly in order to be treated for what our bodies go through. It's hard when we deal with doctors treating according to the results of a test but as we know from dealing with this disease we may have a stretch of good days followed by a stretch of bad days. I wish it was possible to get tested when we feel bad because too many times it clears up on our scheduled testing days.

I wonder how many of us have great variations in our pressure on a frequent basis.