Hi, I'm Sarah Jane.  I'm a 23 year old student living in Indiana.  I was diagnosed at the very end of May after seeing my ophthalmologist for pressure behind my right eye.  After an MRI, I was given a bedside spinal tap which was unsuccessful.  The next morning they successfully tapped me and and my opening pressure was 43.  I returned the next day to the ER for horrible back pain, and then three days later I went back again because of the low pressure headaches, and received a blood patch.  The headaches started again soon thereafter, and now I have the pressure in my left eye again.  I am awaiting my first neurology appointment, and next month am meeting with a NO. 

I am very scared to be entering the world of IIH.

Hi Sarah and welcome to the forum.  I am so sorry for the delay in getting back to you.  It's our responsibility as members of this forum to watch for new posts.  I apologize.

Your being afraid is very normal.  Having a diagnosis of IIH can be very daunting.  There are differing opinions on treatments, prognosis, darn even as to what symptoms signal IIH.  There are no easy answers, but, many of us actually are able to go on with a relatively normal life, in spite of the diagnosis.  

Have a good read around the site.  There is a great deal of info here.  I recommend keeping a daily journal.  Keep track of how you feel, what you are eating, changes in the weather, medication you are trying........  Sometimes triggers will show up that offer a key as to what may help to get you feeling better.  

Also, after next tap, insist on being allowed to lay flat for 45 - 60 minutes afterwards.  It gives the body time to heal up the hole from the tap and avoid a leak.  Those low pressure headaches tend to be worse than the high pressure ones!

Thankyou!  I believe I am one of the rare cases of people who do not have headaches at high pressure.  The spinal tap is what triggered the headache.  When I was diagnosed, it was only the pain in my eye that indicated to me that anything was wrong.  I went back to the ER on Saturday as my headaches had been decreasing over a few days and my eye pain (though, in the other eye this time) was the same as when I was first diagnosed, which I knew signaled a swollen optic nerve.  This was the first day in weeks that my headache was gone, though I believe it was the point at which I had the most pressure.  It was also two days before my period began, and I believe there is a correlation.

The ER doctor chose not to do a spinal tap, surprisingly, but upped my meds (diamox).  The pressure went away, and now I am back to having headaches again.  My brain seems to be happier with high pressure and become more painful as the pressure decreases, even gradually.  It is only my optic nerve that is the real problem here.  I am wondering if the optic nerve sheath fenestration would be a good option for me if the IIH continues and does not resolve with weight loss, medication or time.  Fortunately, I am near a hospital which has a good neurology department, and I have access to a NO.

Thankyou for welcoming me.  I have spent so much time reading forums on this website and I feel like I have learned so so much more from this website than from what little the doctors could really tell me or prepare me for.  I am learning to adjust to my symptoms, and to truly embrace the moments in which I do feel well, as I no longer take for granted a happy body.

Sarah, what a relief that you don't have those awful daily headaches.  That being said, did your doctor tell you about the effects of high pressure on the optic nerve?  It is imperative that you keep a close eye (no pun intended) on how you are doing.  High pressure can cause blindness.  Be certain to follow doctor's orders, keep your appointments and be sure to let your doc know of any changes, good or bad, that you notice.  

Sounds like you are being taken care of my a great team.  That is wonderful.  So many are still searching for a doctor who understands IIH and is compassionate too.  

Feel free to ask any questions or come by to rant and rave.  We understand the daily goings on.