Hi my name is Emma, Im 24 and was diagnosed with IIH in march last year two months after having my son. I had continuos blackouts of vision and severe neck and head pain plus severe papiladema, first they trated me for meningitus until they did a LP where i had an opening pressure of 64, ( i found this out during as i was worried from the shock on the doctors face! ) two days later i had another LP with opening of 52 before they finally put me on diamox and topiramte.
After several LP's and on off admittnces to hospital i fianlly got on track for a little while until my nuero decided to keep trying to take me off the meds as he thinks i no longer need them, every time he does this i get so ill and end up back in hospital until he apologises for being wrong and puts me back on them, I recently put myself back on my meds as i had some in the cupbourd and i was getting married and did not want to be ill which thankfully worked but he has now taken me off all meds again and once again i am begining to go downhill :-(, my last LP was 32 when on all my meds.
Does any one else have problems with neuros taking them off meds? i have asked my doctor to change my neuro but it was refused?
Sorry to ramble on, just feels good to write it all down!