9 Months & 9 Lumbers

Hiya, I was diagnosed in may 2012 after seeing my optician with bad vision had papilliodema in both eyes and upon being rushed to hospital and performing a lumber puncture my fluid was 38. Anyway have since had 9 lumber punctures, take 1000mg of diamox daily plus 2 water tablet. I have just started a diet but it seems so restrictive as its a vitamin a, candida and tyramine free diet. Talk of a shut is bounded around but I'm soo scared of that. Any advice? I'm 38 and have 2 kids thanks
An Ep User An EP User
2 Responses Jan 19, 2013

I was diagnosed in august 2012 im 39 years old . Similar circumstances to you but they are not going to put a shunt in as my eye sight is not being damaged at the moment . I am on various medication which is not easy to manage but I did go back to work in oct 2012 . Everyday is a struggle im not going to lie and its beginning to get to me now after 9 months as the side affects of the drugs are not brilliant ! . Ive lost 39lbs since Sept last year hoping that it will push it into remission but I don't seem to be any further forward .everytime I see my neurologist I seem to take a step back but I dont want an op unless its necessary so I guess I just have to put my faith in the Drs .keep fighting and stay strong xx

Ooops forgot to say only had one LP opening pressure of 45 am on 1000mg of Diamox per day and have recently in the last 2 weeks been put on toprimate

Thank you for your story. I have also had 9 LP's. I was diagnosed in June 2012 and my opening pressures have been 34-40 4 weekly. I have decided to have the shunt fitted on 12th march. I can let you know how i get on x