Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

And the word is...........

Mar 16, 2016 2:15 PM

Yes, I do indeed have pseudotumor cerebri. Brain MRI looks essentially normal but pressure on the optic nerves is at peak right now. Which would explain the never ending headache and nausea. Scheduled for final part of diagnostic testing which is a freaking spinal tap on March 28th at 11:30 in the morning. The first words out of my mouth where, "Is it being done with sedation?" Yes, it is thankfully. Just a little nervous right now.

Mar 16, 2016 4:40 PM

Yeah for sedation! Mine was done while I was fully awake! They just sprayed a numbing agent on my back first. I honestly never felt a thing though. I do remember them telling me they were sticking a four foot long needle in my spine... I think they were exaggerating? LOL I hope anyway, I don't remember if they showed it to me or not. Hopefully they can draw off enough fluid to lessen the headache! Mine was so bad I had my first one within an hour of getting to Buffalo Children's Hospital. And that was within 48 hours of being diagnosed.

Mar 16, 2016 5:17 PM

Ann, my question to you is will the headache and nausea abate after the tap is done? And how long do I have to lay flat for?

Mar 16, 2016 5:54 PM

I think it was three hours flat, then gradually raise up. I remember after the second and third ones I had to lay down in the back seat of the car for the entire hour and a half ride home, then I was allowed to walk into the house to go lay down again. The spinal tap can cause nausea on it's own, so don't expect to be nausea free the first day. Twenty-four hours is how long they told me I would have nausea, I believe. I think the headache let up almost immediately, it didn't go completely away, but it let up. It was the blind spots that took a close to a week to go away. I was in the hospital for a week because the pressure was so high. Then I stayed home for another week before I went back to school. (I milked it for all it was worth because I hated school)

Mar 16, 2016 7:28 PM

And I think he said that a script for Diamox would be called in after if I'm not mistaken. I must admit, it's a little out of my element for this one. Firstly because I don't get a choice of docs(they are using one of the interventional radiologists) and secondly, they want me to have it done at our local hospital primarily because it's safer for me(I think because the pressure is so high). Will the tinnitus also go away? I'm finding it difficult to hear anybody right now.

Mar 16, 2016 7:31 PM

Yes it too will fade, I don't remember if it was immediate though. I think at the time it was all going on, i was concentrating mostly on my vision because I was an artist at the time. Now my hands have given out on me and I can't hold the pencil or pastels.

Mar 16, 2016 7:43 PM

And I'm also guessing that the Diamox will finally help break my addiction to soda or at least I hope it will.

Mar 16, 2016 7:45 PM

It stopped me from drinking it for a very long time. No one believed me when I told them soda tasted nasty. Now after 29 years I know why it did. To this day I still prefer water or ice tea to drink.

Ready to start relieving your pain?

Join Community