Help with Idiopathic intracranial hypertension

[ilovecake77]

Can anyone help with best treatment for iih diagnosis?
my teenage daughter has been diagnosed with this after months of vomiting and headaches,gp kept saying just migraine but after an eye test she was sent to a and e as they said her optic nerve was swollen which is papilloedema,she had a lumbar puncture which showed she had iih.
since this diagnosis she has been given two appointments with a neurologist but both have been cancelled by the hospital and the medication given by a and e was amitriptyline which is not helping and gp wont prescribe anything else.
she is not overweight which i know was given as a factor but she is so underweight due to the vomiting and nausea she has due to this condition and watching her suffer is awful as she hardly goes out ,she is struggling with going to work as she feels ill most days and no one wants to help,so im wondering what do others take for this condition that they could recommend for her to try?

Hello.

I have also recently been diagnosed with iih.

So far I've had eye tests which reveal papilledema, an mri scan and more recently a lumber puncture with opening pressure of 34. The Dr. At hospital said this means a confirmed diagnosis.

I'm waiting to have a follow up appointment either the neurologist but so far haven't been given any medication so can't advice on this.

There are a couple of useful groups on facebook - one that I'm finding helpful is iih support uk.

Also try iih.uk.org for lots of useful information.

I'm so sorry your DD is going through this - its so debilitating and frustratingly there doesn't appear to be one pathway for treatment.

Thank you,i will try facebook and iih.uk for more info.

There was a an IIH UK group on Facebook which is lovely and supportive and they will link you to their group for parents of young patients.