Hello Everyone,

My name is Jessica, nickname is Jex and I am a patient of IIH.  I was just diagnosed today with IIH, but I was put on Diamox a week and a half ago from my neurologist.  I do not know when the symptoms actually started as I have battled with migraines since I was in high school, but it seemed to get worse and I seemed to have some dizziness come into play after my daughter was born in 2007.  I thought I was going crazy, so I just stopped talking to my doctor about it.  

Back in December of last year I saw my eye doctor to check my glasses prescriptions and she referred me to an ophthalmologist.  I waited to go as I had some family issues come up and my husband had some health issues as well, so I did not go in until February of this year.  They discovered that I had bilateral disc edema and referred me to a neurologist.  From there I had an MRI, MRA, MRV and spinal tap done!  It's been a long year already and it's only April!  .   Nothing showed up on the scans but the lumbar puncture showed that my CSF was elevated with nothing to cause it.  So I am currently on Diamox 1000mg a day and am seeing the neurologist, ophthalmologist and getting my blood drawn every month or so starting in May to check the levels out.

I am very glad to have found this forum and be able to discuss topics with others who understand what I have!   for listening and take care everyone!

Welcome to the group, Jex! I also suffered with migraines and encephalitis as a teenager, so I'm not sure when the IIH actually started either. Once you're diagnosed with IIH it's interesting to see how many things in your history stand out.

It sounds like you've already had the testing and found specialists to assist you through the process, so just check out the site and let us know if you have any questions or concerns.

Take care,
Julie

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Jex,

It sounds like you have had a very busy year.  I hope that all goes well for you.