Why research needs to be done on Intracranial Hypertension- Elena Manganvaga's story

Hey everyone,

I have recently had a neuropyscarist appointment in which he tried to say that I had "made it all up" because I was still suffering from Intracranial Hypertension. Just because you have a lumbar puncture there is no reason that you are going to be "cured" and it will never come back. Not only myself but a lot of people have chronic IH and the fact that he thinks that I would "make up" (which I couldn't understand why I would!) the fact I had chronic IH just shows how much doctors really know about IH. 1 in 100,000 people get IH and there is very little known about it and the symptoms it causes, treatments or cures. America is ahead of the UK with their research but even their knowledge is limited.

While on Twitter complaining about the treatment I'd received a young girl got into contact with me and told me how the same hospital treated her, this is her story.

Elena Manganvaga's story

I was diagnosed in April 2008, although I only got a dignosis then I have been suffering from headaches on and off since a very young age. I was only diagnosed because I failed a visual fields test at my opticians, she checked the back of my eyes and said she thought they were swollen, gave me a letter to give to my GP who then referred me on to Kingston Hospital Eye Clinic.
I underwent tests there and they said my optic discs were severely swollen and thought it was IIH, then proceeded to tell me that it was mainly because I was fat. (The consultant actually called me fat) I was then referred under the care of a neurologist named Doctor. Al-memar; he reaffirmed the consultants findings and sent me for my first LP in July 2008, the opening pressure was 27, as they were draining the fluid off there were concerns because the pressure kept going up even as it was being drained.
After this I continued to have LP's as well as being on Diamox on/off. Whilst under Dr. Al-memar's care I only ever had visual field tests as I was complaining of loss of vision and periods of blurred vision. I continued having treatment with Dr. Al-memar up until the end of last year. The reason I transferred is in May last year I completely lost the vision in my left eye, my parents rushed me to Moorfields A&E department where I was put on an emergency dose of Diamox and they referred me to their St.Thomas' department under the care of Doctor Gordon Plant (whom is my consultant now). I stayed in Thomas' for a week under-going tests where I had my last LP which was a normal pressure. They discharged me back to Dr. Al-memar leaving me with only a small portion of central vision saying 'we think your eye-sight could come back' when I had my last appointment with Dr. Al-memar he told me he couldn't understand why I was getting headaches I was in 'remission' and he should discharge.
I lost my temper and told him to refer me to Dr. Plant and he did. So now I'm under-going more tests at the moment to see what the problem with my eye is, and now apparently suffer from migraines, which I don't believe for a second. I am sick and tired of doctors telling me that it can't be IIH or the same headache as before, but it is. They have let me down, they've left me with only a small portion of central vision, I can't define shapes in that eye I can only see bright colours, and large movements. They have no explanation for my loss of vision as they can see no damage to my optic nerve. I cannot remember my life before the headache, nausea and passing out. I'm 19 and I can't do half the things my friends do and no-one can tell me what's wrong. I put my life on hold for a year. I dropped out of college and had long periods of time off of work and I'm no closer to getting any answers. I've been in contact with other IIH patients and everyone has different symptoms but none of us are getting answers. I know about octreotide but I haven't approached the subject with my consultant yet.
Don't give up hope, I did for a very long time, I felt lonely and depressed because I felt like the doctors had let me down, if they had monitored my eyesight closely over the two years my vision problems could have been avoided, nor did they offer me any support at all with how to cope. I only started to find hope again 6 months ago when I found Charlotte and other IIH sufferers. Don't let them tell you your 'making your symptoms up' each case of IIH is different, I spoke to a man who only had headaches no swelling in his optic discs or no damage to his eyes. I spoke to another woman who had swelling in the optic discs and no headache, and I get both. Each case is different they can't just dismiss it because if could eventually leave you blind completely. I refuse to give up and settle with their excuses, someone somewhere has to help IIH sufferers. It's not just a headache it is so much more...

Someone who has IIH doesn't choose to have it, its thrust upon them and its unfair and unrealistic for doctors to expect us to put up with losing our eyesight because they aren't aware or up to date with IIH. They should see us as a case study and way of learning rather then rejecting us. This young girl and many people like her suffer due to lack of research and training, our governments and medical team need to take responsibility and start helping people like us.