Hi - My name is Janna. My story is pretty short, but could be longer because I've had headaches upon arising for many years. I've tried several different pillows and thought I had arthritis in my neck. I also get migraines pretty often that make me nauseated. I've heard a scritch-scratching noise in my head since this fall. I began to have pain in my left eye right after New Year's. It felt like a toothache - could feel my entire eyeball. Finally after a few days I went to an optometrist who noted the papilledema. He sent me to an opthalmologist who sent me to an internist who sent me to a neurologist. Last Thursday I had an LP. The opening pressure was 320. I'm doing OK now, but did have to go back in this week for a blood patch.

I'm 39, obese, and have been taking medication for high blood pressure for 3 years. I am allergic to sulfa so have been told I can't take Diamox. The neurologist told me to go ahead and lose weight because it would be good for my overall health, but not to count on it curing the IIH.

It must have been really overwhelming for you, as well as worrying (hugs), although in a strange way a relief too. Did your doctor not discuss an alternative to the diamox with you, it might be a good idea to ask him, as it can also be treated with frusomide or co- amilofruse. He obviously will know which ones might be better for you.

Losing weight is hard, especially when you feel unwell much of the time with the headaches, and you do get so tired with IIH, so it's easier said than done I know myself. I'm so glad you joined our group, and please ask any questions we are here for you. I hope you like it here and it helps you.

Heidi x

:flower: Hiya and welcome. I hope you find lots of usefull info here. Or just ask any questions we are here to give support.

I was changed to Lasix from HCTZ for my high blood pressure in October. It did work well for the high blood pressure, but it must not be doing a lot for the papilledema. Who knows? It could be helping. I don't know how much papilledema I had before I started taking it or if my pressure had been even higher.

There is a chance that it will have helped it, as you can still have all the symptoms without the papilledema. Although your doctor would have to monitor you very regularly to see the changes I think. It's a difficult one I know :scratch:

Hello uffdamom,

I just wanted to say hi :flower: