Hello, I'm Seraphina,
My nightmare began in June 1999 when spontaneously my head started hurting and it didn't go away. I went to a chiropractor, to no effect and soon I was taken to hospital for tests which showed high spinal fluid pressure. For a year they tried various drugs, all useless and when it got too bad they knocked me out with huge doses of morphine and pethadine. I consulted an "expert" at the Neurology hospital in London, UK, who again found raised spinal fluid pressure and markers indicating M.S.. I then had a long stay at the Royal Free Hospital in London in 2001 with many tests. They told me the pressure was not high enough to be IIH and sent me away with bottles of morphine and nothing else ! My life became a living hell. Around 2002 I threw away all the tablets, and tried to find alternative cures, this search has been long and very interesting, and I could share many strange stories of things I have been told and which have happened, but none of this made my head any better, but I did avoid going to any doctor for a decade, and my poor husband had to cope with my daily condition as much as I did.
Over the years I have compiled an extensive list of things which made my head worse, I thought they were allergies and intolerances, and half of them sound mad, I'll make a list for next time in case it helps anyone else.
Over the last 18 months or so my mild tinnitus has become major, and I began noticing pressure behind my eyes and in my eyeballs, not good as I'm an artist (which I always done standing up at my easel, so as not to bend). Additionally last year when I went for my yearly thyroid test, they took my blood pressure which was high, so I had to see a doctor. For 6 months he tried different tablets, which gave me blisters, an extremely bad cough, very loud tinnitus and  dizzy feeling, so I told him I wasn't going to take these but I continued to take a small diuretic. I told him of my other symptoms but I'm pretty sure he did not believe me and thought I was neurotic. I think something worsened in my condition in July last year, it could have been the massive overheating in the hot weather, my hormones as I'm nearly 56 or the really strange atmospheric pressures which as still continuing, honestly, I can even feel a solar flare. I returned to the doctor and told him my ears and eyes hurt,  in the last two weeks, I have had my ears dewaxed twice and been blowing my Eustacian tubes open by holding my nose ! The optician was more intelligent and has seen a case of IIH before, he has found pressure in my optic nerve and my eyeballs and I am waiting for a 3D photo of my eyeballs next week, which I am sure will lead to my first hospital visit for a decade.
Having been told so many years ago that I did not have IIH I was totally unaware that tinnitus, ear and eye pressure were the other symptoms, I certainly believe it now as all the strange pieces of my personal jigsaw have fallen into place, even down to underactive thyroid and being overweight. I am unable to use a computer due to the electromagnetics, but all the stuff my husband has found in the last week has made sense, it describes me exactly. I thought I was the only person like this and it has driven me half mad. It is absolute nightmare, and all the treatments look awful. I don't know what will happen next but I am horrified and very frightened, so I would appreciate your comments and help.

Hello Seraphina, and a very warm   

Your story sounds so familiar.  As you are able to read the stories that others have written, I think you will agree that most of us go down that same path with the medical community.  It is difficult to get through to the doctors as to what we are going through, but maintaining a journal, as you have, it so extremely helpful.  You are learning your triggers, and hopefully be soon learning what you can do for improvements.  Each case of IIH is just a bit different, so what works for one may not work for another.  It also seems that our own bodies will respond differently to the same stimuli, which makes things even more difficult.  The main thing, though, is that you are no longer alone.  You have found a wonderful source of support and knowledge here.  We are not medical people (except for Deb), but suffer with, or have a loved one who suffers with IIH.  We will try to help you though this.  Please feel free to ask any questions that you may have and we will try to find the answers.
Looking forward to hearing more from you.
Linda

Thanks Linda for your kind reply.
Reading others' stories makes me realize how difficult a condition this is and how scandalous that it is not being researched properly. My husband says that because it's a rare disease there's no money to be made by the pharma companies and so it's not worth their while. I have to agree and it's just another example of the sorry state humanity is in at the moment.

Hi Seraphina, welcome to the group!! Yes, IIH is one of the identified rare diseases. The definitions are a little different in Europe and US, but the outcome is the same..diagnosis, treatment, and medical coverage are lacking! We actually just celebrated Rare Disease Day, which brings awareness to this issue every year.

As Linda mentioned, IIH is different for everyone. You've already experienced how difficult a diagnosis can be, but hopefully they'll find appropriate treatment for you soon. I'm not sure what your resources and healthcare coverage are like, but you may check the Alternative Therapy section for more information on holistic and integrative options.

Take care, and let us know if you have any questions or concerns.
Julie