I Have It Too!

I was diagnosed in 1989 at the age of 20, 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. My eyes have been stable now for over a year, and my health has improved greatly, and I will forever be grateful to my Neurosurgeon, who was dedicated to getting me to this point. In August this year it will be 21 years. Although it took 18 years before I actually physically met other sufferers of IIH, I have managed to make some good friends of many of them and we still keep in touch.

I no longer work, as I was early retired due to the surgeries and my health being unpredicatable in 2006, but not one to sit on my laurels, I have started http://www.ihaveiih.com/ so that I can help others with the coping skills and experience I've gained along my IIH journey. 
Wotserface Wotserface
41-45, F
3 Responses Jul 11, 2010

I hope my story shows other sufferers that they can still have a good life, even with IIH, and to never give up!

Hello, My name is Jamie. I have been dealing with this. I was also on diamox 1000mg. I am now med. free after starting a product 6 months ago. It changed my life. I am trying to have people sign up with me because my Neuro doc is thinking about giving this to patients to help them. I really want to see if it will work on others like me. I think this could be huge. Anyhow, I will give you my web page so you can look at it. At the very least you know that it is a possibility to get better. It is my goal with my company to work with PTC. It was the hardest thing I went through. I would love to share my story with you if you like. Anyhow if you choose to try it, I work with you over 90days, and let me tell you all my pain was gone after 3 weeks. Let me know if it sounds like something that you would like to try, because I would love to share it with my doc. We need to find a cure for this. Thanks for sharing your story. Jamie www.jamiefonbuena.bodybyvi.com This is not a joke or a way to push a product. This changed my life and I will do what I can to help others. I can even send you a sample.

Your bravery and positive attitude are an inspiration to us all : )

Wow- hearing your story is really inspiring. You have had a rough go of this disease and yet your perspective is positive and you seem to have found strength and made it your personal "cause"! I will check out your site! Thanks for sharing.