New intracranial hypertension survivor
 

Hello all!

I'll try to briefly sum up what's happened. I've been fighting headaches for three and a half years now, and six months or so ago, they changed. They became much more of a pressure feeling- like my eyes were being shoved out of my head, or that my head may just explode. I've had four spinal taps this year alone. Finally I found an ER doctor that referred me to a neurosurgeon, because my opening pressures were high. I've been in diamox for months with no relief. The only relief I would ever get was from the LPs. This relief would only last several hours, so it wasn't a viable option.

Long story short, I got a VP shunt placed last week Tuesday (03/05/2014). I had some surgical pain, but all in all the headaches were gone, my double vision was gone and I no longer hear my heart beat. Well, yesterday, I got nauseated and my head started to hurt. My headache is fairly significant. It's on the right side, where my shunt is. I really don't feel well. I've contacted my neurosurgeon and his nurse says it's pretty normal to feel some headaches, however, I'm supposed to monitor it to see if it gets better/worse over the next few days, as they might need to adjust the pressure valve.

I'm basically just looking for others going or have gone through the same thing. I need some positivity right now. Thanks!

Nice to meet you!!
 

I have this too but my nuero calls it "spuedotumor cerebri" on a HIG dose of prednisone for swellen optic disks, repeat LPs and diamox.. the diamox only helps a little but the LP does help ALOT, which is why my told me I should have a shunt placed and reffered me to a nuerosurgeon. Right now I am not healthy enough for ANY surgery so it's LPs and prednisone for me. this stuff is a real BUMMER. Headaches and whooshing noises wake me up all the time and I am so dizzy first thing when I wake up I have fallen down my stairs.

I'm sorry you are I suffering, and not able to get shunted. (Yes, this is also called pseudotumor cerebri) I really thought this would be the answer, and I was feeling pretty good for a few days, but two days ago that kind of all flip flopped. I was able to tolerate it the first day. I called my neurosurgeon's office yesterday and they told me it's somewhat normal to feel headachy and nauseated. I really feel quite a bit worse today and my head pain has me near tears.

I hate to call my doctor's office again, but I'm not sure what else to do!

I would call the doctor asap.

I'm going to see my neurosurgeon tomorrow morning.

I'm very pleased to see your message and know you're getting checked out. Pain like that must be horrible. Hopefully your Neurosurgeon will be able to help you more. All the best...

Hello, Hope you are doing better...
 

Hi, Amii,
I am so sorry to hear what you are going through. Even though I do not have Intracranial Hypertension, I do believe that the few of us on here who have Idiopathic Hypertrophic Cranial Pachymeningitis (very rare) are close in the proximity.

Having all of this activity on our brain is a bit "overwhelming", please know that you are not alone. Keeping you in my prayers!! :)