I was diagnosed as having IIH a year ago and am still confused! I had 2 LPs last year and have been on Diamox ever since. My Consultant is now trynig to wean me off them as there is "no swelling on my optic nerve" and she is not concerned.
However, despite asking her a few times what I am supposed to expect from this and also asking my GP and Neurologist the same question, I am still no further forward. I feel really quite alone and isolated as everyone thinks I should be ok cos the doctors are telling me I'm fine but I certainly don't feel it.
I still regularly have headaches although not as severe as the one last year when I had the LPs. but I can be fine one minute and have a headache the next. I get dizzy, have the whooshing, my head feels so heavy, the sunlight hurts my eyes so regularly wear sunglasses.
I also have an underactive thyroid and PCOS and have recently had blood tests which showed I am anaemic too. Im so tired but when i say tired I mean exhausted like I'm carrying lead weights. I could just :( , if it didn't hurt my head so much!
Whilst I realise from reading other posts that I have got off lightly in terms of LPs and shunts, etc,and feel very lucky in that respect, is it normal to have all these symptoms? Can you still feel like this even when the docs are telling you your pressure is fine? Is this still IIH or am I looking at something else.
I've had to take a couple of days off work for the first time in a year as I feel so tired and low. I don't really have anyone else to talk to about this so apologies for moaning but I don't know where else to go.
Any advice/answers would be most appreciated.