I went to my neurologist today, and after a neurological exam and some questions, he suggested either IIH or a brain tumor. I have blurry and double vision, headache so bad that it’s migraine status, poor balance, my memory is poor, my back and neck always hurt, and I hear wooshing and my heart beating in my ears as well as I am always asking people to repeat themselves over and over. I am supposed to see a neuro opthamologist, have a lumbar puncture, and an MRI. But the MRI is questionable because I have metal in my ankle from fracture surgery. I may need the metal taken out. I am being prescribed Tylenol with codiene for the pain and Diamox for the fluid. I am scared and nervous, especially if it turns out to be a tumor instead. I’m only 24. Help!

Hi Alexas, I'm so sorry you're going through this! It is scary, but they basically use the MRI to rule out a brain tumor and the spinal tap to confirm high pressure for IIH diagnosis. If it is IIH, you should get some relief from the spinal tap. The neuro-ophthalmologist will be able to monitor your vision and hopefully the Diamox will remove some pressure/relieve symptoms. 

Some people have one episode of IIH and it resolves with treatment, others may need ongoing treatment. It really varies from person to person, so makes diagnosis and treatment difficult. If it is IIH and they find the right treatment, you can manage the symptoms and lead a full life. Unfortunately, it doesn't work for most of the members here. Just keep that in mind when reviewing posts..most of our members are still struggling with symptoms, so looking for support and suggestions. If someone finds a good treatment or the issue resolves, they no longer have a need to reach out.

We have all been through it here, so please don't hesitate to reach out. We'll do our best to help you!

Take care,
Julie