i am so glad to have found this site i have been ill for a year after swine flu and have finally been told it is iih
just started diamox and having a repeat lumbar puncture next week, i am still abit frightened by it all
i am 43 married with 3 kids and i have just lost my job because i have been ill all year
any help or suggestions would be much appreciated jacqui

Hi Jacqui to the group. I can understand why you find it so frightening, especially as it took so long to get diagnosed. You must have been feeling very vulnerable as well after your swine flu, which must have been awful, and to recover and then have IIH, must have been quite a bombshell for you.


The Diamox, once your body adjusts to it should help your symptoms a lot, and allow you to be able to get on with your life, there are side effects though that you might find uncomfortable. Things like pins and needles, tinnitus, drowsiness, and nausea. You can read more about it by clicking the link below.

I understand about you losing your job because of time off, I too lost mine for the same reasons, but it is possible to continue to work when you have IIH, and your symptoms are under control with the medication, and of course it is always possible to go into remission. We do give advice in our Recommendations For You in IIH Helpful Coping Methods which we hope will be of help to you. We also have handy printouts.

My advice to you would be to take things day by day, and to do things within your own limitations. Keep a diary or record of your symptoms, what sets them off, what makes them worse, how long your headache lasts for, and what it feels like, that kind of thing. If you notice it gets worse during menstruation make a note of that.

The more you keep a note of these things, the more information you will be able to give your doctor, plus it will also help you to adapting your life style, so that you can function withing the constraints of those symptoms, and also your family will be able to understand what this condition is about too, and will get used to living with it with you.

Hope this helps and please keep asking for anything you feel you need.