Hello, my name's Michelle and I am 19 years old. I was diagnosed with IIH on the 28th of October, 2012.

On the 27th I went to the ER with distorted vision, pressure in my head and a migraine. They took my vitals and put me on an IV. The gave me a muscle relaxer, anti-inflammatory and a pain reliever. They then just sent me on my way. I knew it was more than just migraines so I went to my eye doctors the very next day who said I have severe papilledema in both eyes along with some bleeding. She wrote out a note with all the tests she wanted preformed on me, and sent me to a different hospital. There they actually took blood, did multiple eye testsm a CT scan and eventually a spinal tap.

5 years ago I was also sent to the hospital for papilledema but I was eventually cleared by a neurologist and an opthamologist who said the doctor who caught it "jumped the gun".

I'm now on Diamox 500mg 3 times a day. I still have visual problems, but it has only been 3 or 4 days. Yesterday I went to a new opthamologist who said my optic nerves are still extremely swollen, but it didn't seem there was much damage done so my eyesight will HOPEFULLY return to nearly normal. I'm hoping it returns, I'm an extremely visual person when it comes to doing what I love: painting, drawing, sculpting, digital art, photography, etc.

Did anyone else have a visual problem where everything is very grainy/noisy and slightly distorted? Also, how long does the swelling take to go down? I'm extremely impatient and pessimistic and I was never told how long it could take.

p.s. sorry if there's any errors, it's kind of hard to read my computer screen ;)

Hello Michelle and a big welcome to the group. I was yhour age when I started with IIH but diagnosed at 20, when my symptoms are like yours are now. I was put on the dose of Diamox you are on now and it took about 1-2 for my vision to start to recover and then I went into remission. On saying that not everyone is the same or recover at the same rate, but hopefully now you are having treatment and being monitored, fingers crossed everything will start to settle down.

I know what you mean about being impatient, I was too! Keep a log sheet on your symptoms, we have one in our useful printout section, so you can map any improvements or problems. Give the medication at least a month so that it is thoroughly in your system and doing it's job.

We'll ALL have our fingers crossed for you, and we're here for you.

Heidi xx

Hello Michelle, and welcome.
It breaks my heart to read your story. It makes me wonder if a better treatment plan 5 years ago could have prevented problems now. Sigh. Well, no point in going back there. You need to work on getting you better now.
It is important to take your meds at a regular time every day. The Diamox works best if you can space them out to one every 8 hours. As Heidi said, it takes a while for the meds to work, so hang in there.

Hi Michelle, welcome to the group! I also had some issues years before I was diagnosed with IIH..it's all overwhelming and very frustrating!!! I'm glad that they've done the tests and started treatment..at least you're on the right track. I also think a symptom log would help you keep things straight and give the doctors more information. It does take time for Diamox to build up in your system, but hopefully they've caught it early enought to help. Personally, I ended up with very minimal damage and eyesight almost completely returned. It's important to stay hydrated with Diamox, so drink your fluids and take care of yourself. You should start seeing improvements, if the Diamox is going to work for you. Keep us posted!


Julie

Hi Michelle! Sorry I'm a little late welcoming you to our group .. but I'm so glad you found us.

Sorry to hear about all you have been through with your IIH! *hugs* For me, it took a month or more for my vision to get to its "new normal" after I began treatment with Diamox. How are you doing so far?

Hugs! I am 24 and was recently diagnosed myself so I understand the fear and anxiety you must be feeling right now.