Hello everyone well my news is very much the same as always. I still have not got any further forward still waiting for surgery. still waiting for formal diagnosis this has been going on for over year now pals involved and more phone calls to consultant secretary by me , but I just get fobbed off all the time and now my worse fear has come true. I work as a sister for nhs and due to my csf leak and all the pain I am in daily I have not been able to work for a year now . yesterday I received a letter stating their is to be  a hearing to see about terminating my contract due to ill health. I have nursed for 30 years and due to all of this I have lost my career i am devastated. I understand a year is a long time but a collegue was off for 2 years with no such threat I think because her illness was far more understood than mine and whilst I know that what she went through was awful I feel I am being treated differently as no one understands this condition iih they think I just have a bit of a headache. I really do not know how much more I can take I am now facing financial ruin all because 2 consultants cant decide what is causing my cranial csf leak ,empty sella tinnitus eye pain head pain etc. today I have been told my surgery hasn't even got a provisional date I want my life back I want to sit out side in the sun without my nose dripping fluid (lovely image ) or the sun hurting my eyes I want to go swimming in the sea which is a 10 minute walk away instead I sit feeling sorry for myself which is a bit pathetic really. i am trying to be pro active but at every turn doors are slammed in my face. so so sorry maybe this rant is more for me to just get it off my chest .

I'm so sorry! I lost a job because of IIH in the beginning and know it's not any fun..doesn't do much for your pocket book or self esteem. I know other members have gotten assistance regarding their employment in the UK, but can't for the life of me think of it. Look through the "Recommendations for You" Section. I know they at least have information on sick notes, etc. At least it's a place to start until Heidi or someone from the UK logs on.

Hang in there!!!

Thankyou so much just feel so devastated over all of this.

Lisa I for one totally understand where you are coming from. I worked for the NHS for over 15 years and when offered my job, undertook the required Medical, where I informed them of my IIH. Granted at the time I was being treated with Diamox and the odd lumbar puncture, so my symptoms were manageable. Once employed I found them quite understanding, however, when I had to have my first shunt as I was told I was going blind, they were less than understanding. In order to return to work after my surgery, I had to have a computer which would allow for a larger font, a chair and other things to enable me to work, as I was left partially sighted with tunnel vision and had mobility impairment and back problems due to the LP shunt, but the department I was on did not have them in place when I returned to work, despite Access to Work advising them and constant reminders.

When I returned to work I was shunned by my colleagues and things were made difficult for me so I asked to be transferred to another hospital in the trust. I was placed on secondment for 3 months and in essence had to fight to keep my employment. As I was a Unison steward I went to my union and asked for their help, and eventually was employed by the Infectious Disease department. I continued to work and even attained promotion, which meant I was then leased to a Hep C Study Group as a Data Manager, but then when I needed revision surgery my contract was terminated, and they again told me I was to be put on secondment. They gave the reason as the funding had run out for my position with the Study Group, but my boss had actually told me it was because of the surgery. When the trust failed me yet again by not finding me an adequate post but insisted on secondment, which means basically if you can not find another position within the hospital in 3 months, you're contract is terminated, (I had to fight the first time) I decided that despite my career with the NHS, I would be better off elsewhere, so I took legal advice, went to an Employment Tribunal for disability discrimination. I had no solicitor but  my husband and I handled it ourselves. Their solicitor kept sending me threatening letters saying I could not possibly win but I stuck in. I had plenty of evidence, and my Neurosurgeon and Neurologist wrote letters on my behalf, and in the end I won. I then was advised by my Neurosurgeon to take my NHS pension on medical health grounds which I did.

So my advice to you would be to contact ACAS, and your union if you're in one, and if you have any written evidence etc. bundle it together in case you do decide to go to the Employment Tribunal. Don't give in without a fight and don't go to a meeting without a representative from your union if you're in one, if you don't have one ask ACAS to advise, but delay the meeting until you have found out what your legal position is first.

Whatever I or the Foundation can do to help you we will, as we are advocates for you, and will do all we can.

hi Lisa, I am so sorry.  I am in the US so I think Heidi has the best advice about what to do there, since I don't know your system.  but I can commiserate.  I am a physician and I lost my career to this illness.  for me it has presented as severe chemical sensitivity and I think it was years of being exposed to everyone's perfume and the disinfectants in the hospitals and clinics.  on my last LP, even though I am in remission after jaw surgery, my ICP increased by 7% upon exposure to deodorizer chemicals.  so I think in my case it is something similar to how tetracyclines cause IIH, the chemicals triggered it but then they just perpetuate it because they are everywhere and I can't get away from them.  I stay home most of the time.  I am fortunate because I had good disability insurance and I won my social security.  I just don't know what resources you have there.  I think you need to find a doc who will definitively diagnose this, because without a firm diagnosis it will be hard to deal with all the naysayers in this next battle.  it seems like with IIH we get hit from all sides with bad stuff.  most of my friends with IIH have had toxic parents and PTSD issues from bad things that happen to them.  it's like we are magnets for it, so keep your chin up whatever you do, keep putting one foot in front of the other.  don't let the darkness win.

it never ceases to amaze me how total strangers can make me feel better and restore my faith in people. the support you give me on here keeps me at the mo from going under as most of the time I feel I am teetering on the brink of a huge black hole and do not feel supported much at home with family I used to but I think they have just about had enough themselves. I have the union involved and I am waiting to hear back from them and pals are trying to get me some answers but I do not hold out much hope I was hoping that I might be able to go down the medical retirement route but apparently because I am waiting further surgery and the neuro surgeon thinks this is not iih purely because I do not have papilledema then I would not be accepted for this. It looks like I have yet another battle but this time I really do not feel strong enough to fight on my own. I am contacting the brain trust to try and get some support and advice .Heidi  for all of your advice it has helped so much caring nhs aye again thanks all x