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Why Awareness And Funding For The IH Research Foundation And Sufferers Of IIH is Important.

I was diagnosed in 1989 at the age of 20 with what was then called Benign Intracranial Hypertension, after starting with it in 1988 while I was pregnant. I had all the usual symptoms, and my doctor kept telling me it was the change in my hormones with the pregnancy, then when it continued he said it was through the stress of being pregnant. After having my daughter the symptoms continued and I was told it was from stress of a new baby. Several months on I went back as I had noticed my vision was blurred and I was sensitive to the light, and feeling dizzy most of the time as well as having the crippling headaches. He told me it was migraine and put me on migraine tablets.

A week later I noticed dark spots in my vision and I had a constant whooshing in my ears. So I went to the Opticians thinking it could be that I may need glasses. Within in minutes he had rushed into his office and reappeared with another optician, then he gave me a letter and said I was to see my doctor asap.

This was on a Friday so I had what seemed to be the longest wait until Monday. My doctor read the letter, looked into the back of my eyes, then called the hospital and sent me there straight away. So armed with my baby of 8 months, and a friend I went to the emergency eye department at the hospital. They did all the eye tests, then examined the back of my eyes, then the doctor rushed away and came back with 5 more doctors, who then all looked at the back of my eyes, then stood in a group with hushed whispers.

They told me I needed a CT scan, an MRI and other tests, and told me not to be alarmed but they thought I had a brain tumour, but they couldn't say at this point how big it was. So I phoned my husband at that time, and told him, then went off for the tests. After having them they reassured me it wasn't a brain tumour, and that I needed a lumbar puncture (the first of many), they told me I was lucky as a few more weeks I would have been blind. They couldn't tell me much about what I had because they said they didn't know much about it, and hadn't seen it before and didn't know if it had a name or not. I was in hospital for over a month and the lumbar punctures became my regular treatment, and I was put on 2 types of medication to control my CSF, which meant taking 8 tablets a day.

You may be surprised to know that a week later I returned to work, and so began my IIH journey. As time passed it was established my hormones were the trigger, as I wasn't overweight, or been on any medication that could trigger it, and finally they told me it was called Benign Intracranial Hypertanion, it was rare and they were still learning about it.

So as the years passed, I raised my daughter alone till she was 8, when I met my second husband, I went back to college and got a full time job working in the hospital where I'm treated. I was given Diamox, which I couldn't tolerate so they switched it to Co-amilofruse, had regular lumbar punctures and eye checks and went on with my life. I eventually achieved remission until 2000.

Aged 32, my vision started to deteriorate, and I would have periods of no vision at all, I was forgetful, so sticky notes became my best friend. I was constantly tired and could fall asleep on a washing line at the drop of a hat, and my headaches were back with a vengeance. In denial I told no one, and adapted my work desk etc to hide what was happening to me. On my way to work one day I had to go up some concrete steps to reach my building, when I stepped out, I stepped out into nothing, and feel down them damaging my wrist and being badly bruised. Luckily 3 days later I had an appointment to see my Neurologist, and explained to him what had happened and he examined my eyes and we went through the usual routine about my symptoms. My remission was over!

In 2001, I had my first shunt, a Lumbar Peritoneal shunt to save my sight, which it did, but it severely affected my mobility (which is rare but can happen). As I had left it so long before informing my Neurologist about my vision, I completely lost my peripheral vision and depth perception, and was eventually registered partially sighted and given a white cane, which I have to say I only use in unfamiliar places.

Five years later, my eyes again began to deteriorate, and I had a shunt revison, which then gave me a Ventricular Peritoneal shunt. I went on to have a total of 18 surgeries in as many months, including 2 subtemporal decompressions. I still have a VP shunt and I still take Co-amilofruse.

To others I look in good health, and that's the kicker, because I'm not. As it is a neurological condition the effects can't be seen by the naked eye, which to the unaware means because I don't look ill, I'm not. Look more closely and you will see, I can only see you if you are stood in front of me, feel my head and you will feel the telltale bulge of a VP shunt, and on either side the soft fist size holes of the sub temporal decompression. You might think I'm clumsy or drunk, my speech can be slurred, words mixed up, my balance off. I might even sometimes seem confused. You'll also notice that I forget things just said or done. These are all symptoms caused by hight cerebral spinal fluid pressure.

I am not alone, there are hundreds if not thousands of others, men, women, children, all ages, any race. My story is not uncommon amongst those of an IIH sufferer, nor is the pain, frustration and heartache. For a lot of us it costs us financially, you might not realise that, but it does. We lose jobs because of being unable to work, for others it's the cost of treatment, friends drift away because they don't understand, and we never recover from it.

For children , it's the loss of just being children, going to school and playing with their friends, and doing all those things that other children take for granted.

We are stuck in a vicious cycle and our life is never the same. Yet to you we don't look sick.

Idiopathic Intracranial Hypertension (IIH) can strike at anyone, anytime, it could be you, your relative or friend, it's not something you can be tested for. It starts with a headache, then affects your eyes and it isn't always diagnosed straight away, until you are sent for a Lumbar Puncture and scans. It's a silent condition that creeps up on you with no warning. It can make you feel isolated and depressed. The chronic pain too much to bear.

It can rob you of your short term memory and eye sight. It robs you of a normal life!


The IH Research Foundation is the only non-profit organisation of it's kind. They are looking for a cure, and raising awareness, and the more funding they get the more they can carry on working towards those goals. They offer us hope that one day we can be free of this as yet incurable condition. They are aided by the IH Brain Pain Organsation, who are fundraisers for them, and encourage events and ideas on how you can help.
If the I H Research Foundation find a cure, stories like mine will be prevented, and children will again be able to be children.

 So when you see anything about IIH or encounter someone with it, try and remember that there is more to it than what you can not see.



Wotserface Wotserface 41-45, F 1 Response Feb 4, 2011

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I understand. Thanks for sharing. Wish to God, I could do something. My prayers for you and all others. I hope you all get well and get back your eyesight. <br />
continue to be strong.