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 Clair - diagnosed March 2011

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PostSubject: Clair - diagnosed March 2011   Tue Apr 19, 2011 5:55 pm

hi everyone.
im clair, im 27 and am married with 3 girls. i was diagnosed with IIH at the end of march. the diagnosis came after my opthomolgist found i had bilateral pappilodema. after a trip to the hospital for a second opinion i was informed i may have a tumour, later to discover i had IIH. i remember asking the dr's what it was and why i had it and all they could say was 'ecxess fluid but we dont know how or why.. now can i look in your eyes because pappilodema is really rare and your the new guinea pig'. i was amazed at how little everyone knew about the condition and i had to resort to researching online about it. i still have no idea on whats going to happen or what could happen in the future. all i know is i have to lose at least 3 stone and keep on top of my pain relief as the acetazolmide don't work and cause too many severe side affects.
my friends are supportive but dont understand what i have and my husband seems to think theres nothing majorly wrong and the headaches cant be as bad as i make them out to be. i find it frustrating that i can go from being fine one minute to being in agony the next and not really understanding whats going on.
any help or advice is really welcome. i feel totally lost
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PostSubject: Re: Clair - diagnosed March 2011   Tue Apr 19, 2011 6:30 pm

Welcome and I am sorry for your diagnosis. I have had this disease for almost three years now and it is very scary at first. I got diagnosed while pregnant in 2008 and then they did not know much about the disease. I was told to research the disease on line and stay away from forums, although forums have been my saving grace. If you can understand some medical terms, there are several new studies and reports as this diesease becomes more main stream. The words you don't understand, just google. Until you can control your pressure through meds, shunts, eye surgery, the pain can be great for many. It is hard to explain to someone how you can walk around with the worst headache of your life and with children go through your day. I have a toddler and I find it hard to get up some days and to put on the happy face. Try not to get frustrated with them, it is hard to understand. You may even try steering your husband towrads some of these forums, if he wants to know how it feels, some people put it very eloquently. A few family members I feel finally understand a bit more by doing this.
I am currently on Diamox three times a day and have been since diagnosis. The side effects are horrendous some day and have not seemed to lessen as I have read. There are other methods to lower your pressure and I urge you to get a second opinion or another appointment with your doctor. Sight is what can be lossed here with extra pressure. Once you getthe pressure under control, your life will start again. It may not be the same, but you will find your new norm. Weight loss is the urged by every doctor I have talked to, so I wish you luck and Blessings.
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PostSubject: Re: Clair - diagnosed March 2011   Tue Apr 19, 2011 6:39 pm

Hi Clair and a very warm to the group. I understand exactly what you're saying, and how frustrated and bewildered you are. We have written a Guide Leaflet that we hope helps our members who are newly diagnosed to understand life with IIH. Here is the link to it A Guide to IIH - A New Way of Life
IH is asscociated and has been found to be common among overweight women, which is why you have been advised to lose weight, as they may think that is what triggered it, so by losing the weight you could go into remission. No one knows exactly what causes IIH, but they have associated several factors that are common among sufferers.
As this is a neurological condition and not a physically visual one, the people around you wont understand, and there idea of a headache is no where near, what a headache cause by raised intracranial pressure is. To them a person with a headache just needs to pop a couple of painkillers and it's gone, but as this is to do with cerebral spinal fluid, which is raised, they don't understand that this puts pressure on the brain, eyes and causes stiff necks.
To make sure they understand exactly what this condition is, and that it is not to be taken lightly, you can either print off information from the IH Research Foundation website, or get them to go and read up on it there themselves.
The IH Research Foundation has been conduction research into this condition for ten years, and are a leading authority on this, so they have lots of information.
Visit their website at IH Research Foundation
I hope this helps, and please ask as many questions as you need, and we will help you all we can.
hug Heidi
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