Hi Everyone My name is Julia, I'm 23 years old and I am from the UK. January this year I was diagnosed with IIH. I've had several lumber punctures and currently managing my illness Azetazolamide 250g 2 tablets twice a day. My consultant basically told me I have this condition because im over weight. I'm not very over weight... I weigh 12st 11 and have what you'd call a "mum tum" I have weighed more then what I am before and never had this condition so I'm not sure to believe them. Just wondering if anyone else was told to lose weight? If so, did it get rid of IIH?


Also my cousin has the same condition and she told me her consultant said it can be genetic. Has anyone else heard this?

Thank you for reading xx

I lost 40 lb after my symptoms started because I felt so ill, not because I knew what was going on.  I was no better when I was stick thin.  my 9 year old son has this and he's not fat.  I'm sure my mother has it also and she is not fat.  plenty of people have this when thin, and in my family it is clearly genetic.  I believe it is related to the anatomy of our jaw, as my son and I got our jaw from my mother and I got better after jaw surgery.  sleep apnea plays a role in our family.  do lose weight because it may help you, you never know until you try.  I know someone who was normal weight and lost even more and felt better.  you are right to ask questions and question the biases of the doctors who don't even realize they are biased.  there are a couple of papers on Pubmed discussing familial IIH, but my son's first neurologist denied this and was very rude to me when I pointed it out to him.

I think they suggest weight loss because it does help some and majority of people affected by IIH are overweight women of child bearing years. It affects any age, shape, and size, but we try to encourage members to get as healthy as possible.

For me, I gained over 100lbs after diagnosis and just can't seem to get it off no matter what I do. I'm currently eating vegetarian and try to keep processed foods under 20% of my intake. I have found that processed foods cause a lot of swelling and pain for me, so best for me to avoid them when possible.

Everyone is different, so you may want to try an elimination diet and keep a journal to get an idea of what foods may affect you. A symptom log is always helpful in the beginning because IIH does affect everyone differently and it can help identify triggers. There are samples in our Useful Guides and Print Outs section.