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!

Hi Emma, and welcome to the forum.
I take it you are not in the U.S.?? Your neuro does not have your best interest first and foremost.
Is there any way that you can go above these docs that won't let you switch docs and get a different doctor to be in charge of your case? An OP of 32 is HIGH!!!!! You need to be on medication to bring your levels down. Normal high limit is 25 cm of water. The area between 20 and 25 cm is actually considered borderline, and can be high (like mine is at 22 to 24 cm. of water). Once your levels are brought down to need to keep them down, which most folks do by continuing with their medication!
Your doctor sounds like he must have graduated last in his class at a very low level medical achool.

Hi Emma, welcome to the group!!!

I have to say I am a little surprised the neuro keeps taking you off meds, if they're helping. It's my understanding that IIH is difficult to manage, so it's great that you're having positive results from treatment! I'm sorry they're giving you such a hard time. Is there another doctor or specialist you see that would be willing to make a referral on your behalf. I know I can always count on my neuro-ophthalmologist, when others don't agree. He's really been the most informed about IIH, so has been my biggest advocate. You do have every right to a second opinion, so I'm not sure how your doctor can refuse. You might want to take a look at our guides..Talking To Your Doctor About IIH might give you some ideas. You may also want to check out the additional links regarding patient rights or visit ihrfoundation.org. I think you'll find a lot of good info and support in both places.

You can always PM me or anyone from the Admin Team with additional questions or concerns..we'll do our best to help.

Take care,
Julie