Just as an afterthought, I was wondering if any of you get pain in your head/neck to right shoulder and tenderness down entire length of your spinal cord? I have for the longest time and never knew why until now. When my neuro symptoms are severe with numbness or weakness to one side of the body or uneven walk I get panicked. Anyone else do this? Today I am full of apprehension about my future.

This can happen when you have high pressure and here is some information from the IH Research Foundation about Other IIH Symptoms that you might be able to relate to. You should also have a look at their site as it has lots of information on there.

Heidi

Thank you Heidi. That is very helpful and I appreciate it!

Yes, actually I do get the neck and shoulder pain on my right side, too. You're not alone! It's worst on my "high pressure" days. Heat sometimes helps this for me.

Thank you so much, I will definitely try heat!!

Heidi, that page from IIH is so reassuring, even to me. They have enough patients registered that they have data no one else would have access to, and really expands the knowledge base. So good to know that these other symptoms that some doctors may poo poo are very real symptoms of IIH!!

I have those same symptoms too, a lot of those extra symptoms aren't really acknowledged by most Neurologist's so I would suggest printing the page off and showing it to your Neurologist when you mention those symptoms.