Hi,

My partner has just been diagnosed with IIH and after much research online I stumbled across this site and I was hoping for some information and a little reassurance. After reading I've learnt a lot about the condition but I know there will be much more to learn. At the moment my partner has been in hospital for just over a week. She has the constant, severe headache that doesn't go away and her vision seems to be getting worse. She complains of double and blurred vision. Since being at hospital she has been given a lumbar puncture but that didn't seem to relieve any of the symptoms. They have started her on a high dose of diamox which makes her incredibly drowsy,(does the drowsiness wear off after being on the tablets for a while?). I think she may have a lumbar puncture next week if tests show that her optic nerves are still swollen. I just feel so helpless. I know I can't take the pain away and all I can do is be there to support her. Also, from brain scans they have noticed that her pituitary gland seems to be swollen and she has a very high amount of prolactin without ever being pregnant. I was wondering whether anyone has experienced something similar and could offer some reassurance that things do improve and she will feel better. Thanks in advance,

Kaitlin

I think that if you look up pituitary adenoma online, maybe wikipedia, it may explain what is going on.  the docs may need to explain it better to the two of you.  I couldn't tolerate Diamox at all so I can't answer to long term treatment with it personally.  what you are doing right now is exactly what she needs from you; caring about her and supporting her.  a great many of us with IIH have been abandoned by those closest to us, who couldn't handle our illness.  just the fact you would take the step of posting here tells me that you are an important part of what she needs to get through this, just being yourself.  don't underestimate that, and maybe it will allow you to feel less helpless.