My name is Rachelle and I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in August 2010. Before I was diagnosed with IIH, I was four months pregnant and had a sudden miscarriage. The doctors said they didn’t know the reasoning behind the miscarriage because the baby was “healthy.” Two and one-half months later, I became pregnant again with twins and lost them at six weeks. My boyfriend and I were devastated. The doctors had no explanation. Since I have a five year old daughter, I was not sure what was going on with my body.
After the miscarriages, I started having severe headaches and would feel nauseous. Then I started to notice that I had to turn my head sideways to see properly. The doctor said the vision issue was probably a result of the miscarriages. As the weeks went by, I could not see anything unless I literally had my head tipped to the side and almost upside down. Even then, all I could see were pixels. I was obviously very frightened.
My young daughter was left to help guide me around the house and my boyfriend was very supportive and understanding. My parents, on the other hand, were not as supportive. My father thought I was making it all up. His words to me were, “You look so ridiculous.”
I was sent to an optometrist, who told me to rush to Vancouver General Hospital (VGH). When I arrived, several tests were conducted and I diagnosed with Idiopathic Intracranial Hypertension (IIH) and told I needed a spinal tap. I was not aware at the time that the worst was yet to come.
Not only did the spinal tap take two hours, the result of the tap is believed to be the cause for my severe muscle, tissue and nerve damage. Apparently, after the spinal tap, my insanely severe headache and bouts of throwing up were the result of damage done from the rapid loss of spinal fluid, which made my body go into shock. I was told to drink a lot of caffeine.
After getting out of the hospital, I was in a wheelchair for over a month and unable to walk. It took over three months of therapy to start walking again. My ophthalmologist put me on Diamox for one year. I was taken off because they were amazed at the high level of improvement, stating they had never seen someone heal as quickly before – out of hundreds of people.
I have found many ways that have helped me and I am trying to reach out to help others. I have permanent eye damage in my right eye, but also realize I am a lot better than many who suffer from IIH. I was having massage therapy to help heal the severe damage in my back, but now we are unable to afford it. I have a personal trainer who keeps in touch closely with my body and figuring out what helps this condition.
We are spending over $600 on medical each month! I still can’t always see properly and I have to wear blue blocker sunglasses inside and outside (I do not have prescription glasses).
I have lost almost 10o pounds since August 2010 by exercising in specific ways, pushing myself to the limit, to the point of feeling sick. With this condition, I have found the only way to get control of the disease is to push yourself through it. You will even get a severe headache when exercising, and you will feel sick – but you will get better faster.