scared

Hi

I just wanted to say you arent alone in feeling this way Izzy. I was diagnosed with this awful illness 3yrs ago. Its so scarry to imagine all the what ifs but my advice to you is try to dwell on the here and now not on what might happen in the future. Youve done so amazingly well to lose that ammount of weight what a star!!! Thats something iv really struggled with, Any tips???? Iv found support groups to be really helpful it really makes a difference to know that there are other people out there that feel as scared and alone as you. It can be a very lonely disease as noone can physically see whats wrong on the outside. Keep up with your meds, insist on regular check ups regardless of whether ur doctor makes you feel like a hypercondriac or not and continue living a healthy lifestyle. Only a timy fraction of IH sufferers lose there sight and thats mostly due to them not following their doctors recomendations. Dont lose hope hun it is possible to live a perfectly normal life with IH.

best wishes

Laura x

hi i was diagnosed at 22 years old im now 35,unfortunately it was nt diagnosed quickly enough for me an i lost the vision completely in my left eye after having numerous bleeds in both eyes the bleed eventually scarred the focal nerve to the brain.i went 2 years being treated as an eye patient before they even picked up on it i never had a brain scan in the 2 years.i was then given a eye operation to cut a hole out of my poor eye hoping the spinal fluid would work its way through the eye an out through the sinuses an that failed,i had the lv shunt fitted an went 4 and a half years with it in experiencing low pressure headaches frequently over that period 2 years ago i felt numbness in the side of my face an automatically rang the hospital i had a routine brain scan and learned that the shunt had been over draining from going in an that it had made my brain drop slightly towards my brain stem! they took me to theatre an closed the shunt off i ended up losing 2 stone in weight an did fell much better but after gaining just half a stone of the weight i ve lost the pressure has com back with a vengeance an i have had 2 lumbar punctures in the past 2 weeks an im now back n the same position i was in the first place all i can say after 13 years is if you have the shunt please make sure your seen regulary an ask for scans every six months losing weight does help but you only have to gain a small amount of the weight you ve lost for it to come back theres no cure as they dont know where it comes from so theres only procedures to cure the symptoms just make sure your always asking questions an being seen often

Hi I was Diagnosed when I was very young, Unfortunatley I lost my eye site in my left eye when I was fifteen. They managed to relieve some of the pressure and I have partial site in my eye now, but I haven't let it keep me down or from the career I would like to do. My advice is if you take the medication regularly, excercise well and focus on the good things about yourself you'll get through it just fine. I know this is a long time after you posted your comment so I hope all is ok with you. But don't let it get you down, the condition is a part of who you are and you will be ok.

Hi I'm Kelly and am 29 I have had this disease for 3 years and I know how scary it is mine is getting worse all the time and met my surgeon last week at kings in London they ate planning to do a shunt but have heard horror stories I have 3 children and don't want to be in pain no more.

I also have IIH and I got a vp shunt in may 2012.

It's in fine and working well. It's no cure but its saved me going blind.

I have good and bad days. I'm so glad I had it done. I made loads of video of my progress.

Feel free to follow me on twitter VDubsTDi also on YouTube under the same name

Also you can find support on I have IIH website