Quick update

After having requested a change to a new neuro ( wasn't happy with the one I saw) I am still waiting. After having to complain to the hospital to the cheif executive about my care ( a hospital that I also work at), that urgent tests that should have been arranged within two weeks of me seeing the neuro( along with other issues), hurray I finally have an MRI scan this weekend and appointment with neuro ophthamologist next week(5 weeks later, not that I'm counting). [You must be registered and logged in to see this image.]

Feel like I could do with an L.P. but got no one to contact as the last neuro discharged me from their care, fun. having read through this forum though I discovered about taking tetracylines and them being a trigger for iih. I was taking these and even informed my neuro about this but nothing was said [You must be registered and logged in to see this image.]. It was actually my dermatologist who said to stop taking them when I mentioned it to her that I had since then read that they could have caused the iih. She seemed to know more about iih than the neuro did.

So hopefully should at least get some answers about my vision next week [You must be registered and logged in to see this image.], as for when I will get assigned to another neuro who knows [You must be registered and logged in to see this image.].

Other than that keeping my head up and getting on with things as much as I can, its just good knowing that there is a place where everyone is in the same boat.


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I took Roaccutaine for Acne and was also taking Tetracyclines prior to that and my Neuro confirmed that he believes that is what has caused my IIH.

Jo I know exactly what you mean. I had a similar problem and I too worked at the same hospital and had done for 15 years. I think sometimes, that having worked in the hospital, that being on both sides isn't always beneficial. I see your in South Yorkshire, me too, I'm in Sheffield. Which hospital are you at, is it the RHH? I'm under Dr Pepper who is the Neuro Ophthalmologist and does the IIH clinic there. She's pretty good and knows her stuff.
I'll keep my fingers crossed for you, and if you would like my phone number just pm me. If we live near to each other, we could perhaps meet up.
Heidi[You must be registered and logged in to see this image.]

Lizzie, did your iih go into remission after stopping taking them or did it continue? i stopped taking lymcycline last week, know its only a week but still got iih symptoms.

Thanks Heidi, that could be good, I'm at doncaster but neuros are based at sheffield rhh. I've got and mri mrv tomorrow and am seeing Dr pepper next thursday.

Having to cut this short as my little 7 month old has decided she is not going to go to sleep without a fight tonight.

Will continue later