HI everyone,
Just looking for some information. I had my son when I was 19, when I was half way through my pregnancy I started getting awful headaches and neck pain I just dismissed it could be anything serious because I was pregnant and working 12 hours shifts 6 days a week, however, after my son was born the headache stayed and if anything got worse then my eyes felt like they were going to pop out of my head if that makes any sense.
So I went to see my GP who sent me for a MRI, they found increased fluid around my optic nerve, so I've had a lumberpuncher and found my pressure was at 28, they said that they were sending the fuild off for testing and that id see my doctor soon to talk about the results. I'm just really confused what they are testing for? They said it could be IIH And they have also put me on acetazolmide(if that's how you spell it) also the headache doesn't feel like it's changed in anyway, I had the LP done on a Friday the headache wasn't there on the Saturday, then Sunday it was back, is this normal?
Any information would be really appreciated, feel like I don't know what's going on. After reading up on IIH I think I've scared my self abit so would love to hear from people who have IIH, I've never even heard of it before. Sorry for the long post.

hi Ellie;
I'm so sorry you have been going through this.  after a lumbar puncture (LP) your pressure (ICP) will come down a bit and you should feel better.  however CSF is made rapidly and over a day or so the pressure re-accumulates.  that's why the headache came back.  if you are still having the same symptoms, you can ask to increase the Diamox (acetazolamide) dose.  IIH can come on during pregnancy.  I realize in retrospect that I had mine before but it got a lot worse during my second pregnancy.  for me, obstructive sleep apnea (which can also increase during pregnancy) played a big role.  if you have any problems with your sleep, it is something to rule out as a trigger of IIH.  they send the CSF for standard testing to make sure there is not too much protein in it, etc.  sometimes they can do test for MS, if they were worried about that at all.  it does sound like you have IIH.  just make sure they rule out anything that could be causing it that can be treated.  you ought to have a brain MRV and I think a neck MRV too.  blood testing for autoimmune and thyroid disease, and coagulation issues.  have you taken any medications in the last few years, like hormones or doxycycline?
Deb

Hi Ellie, welcome to the forum! They use spinal tap to check for other possible causes and reduce your spinal fluid. Usually if your symptoms subside once they've removed the fluid and reduced the pressure, then they confirm it's IIH.

Diamox is a typical medication used to reduce this fluid level, but has a lot of side effects and they start with small doses. I would definitely follow up with the physician that prescribed the medication and let him know that although you found some relief following the spinal tap, the Diamox doesn't seem to be helping.

Your symptoms do sound typical and it is related to hormones, so only makes sense. Take a look at the forum and let us know if you have any further questions or concerns. We'll do our best to help you through the process. I recommend starting with  Useful Guides and Print Outs and General Information sections.

Take care, and keep us posted!
Julie