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    Posted February 28, 2014 by
    Phoenix, Arizona
    This iReport is part of an assignment:
    Living with a rare disease?

    My life with IIH

    My name is Stephanie Elliott and I have Idiopathic Intracranial Hypertension (IIH) aka Psuedotumor Cerebri. It is very difficult living with this rare disease because most doctors have never heard of it, no one knows how to treat it, and a cure is no where to be found.
    When I got pregnant with my fifth child, my only daughter, I started having really bad headaches, had a hard time thinking at all, and was always losing my balance. I kept trying to tell my ob but he told me that it was part of being pregnant. After I had my daughter it continued and the pain just got worse. I went to my regular doctor and he was concerned, since they were actually migraines and not headaches like I thought they were. Since I was breastfeeding I could not try very many medications so he put me on pain killers to help until I was comfortable with not breastfeeding anymore. I went to a neuroligist that told me to come back when I was done breastfeeding since she could not prescibe me anything. After almost a year and a half I was forced to stop breastfeeding because the pain was only getting worse and they wanted to try prescriptions to help me. After about ten different medications that didn't work the neurologist finally sent me in for a lumbar puncture to see if my pressure was ok, and it wasn't. I was diagnosed in August of 2013 and put on diamox, which is a diuretic that drains extra fluid off of my brain. The side effects of this medication were so bad it was hard to get out of bed most days. Over time, the side effects get better. The next step, which I find inevitable, is having a shunt put inside my skull to drain the fluid from by brain into my stomach, I just have to find a doctor that I feel comfortable with enough to trust.
    Before I started showing symptoms, I attended Glendale Community College and was taking 21 credit hours a term. My grades were around a 3.5 and I was always busy with school and my kids. I have been working on transferring to ASU for my degree in Accountancy, and I finally finished my last class. Since I was diagnosed I have tried to complete a term at ASU with no help and failed miserably due to memory loss and the inability to concentrate. The medication made it very hard for me since I was always tired and there was only a few hours a day where I was coherent. I am going to try again since I have applied for disability services to get the leaway that I need to accomplish my homework.
    Every day is a constant battle with the pain and with people understanding that it isn't all in my head. I can't sleep a full night or I will be in severe pain the entire day, I can't clean too much or I will be in pain for a few days, I can't even help my son with his homework on most days, and I feel like I have lost myself in this whole mess called IIH. I have severe nauseau all day every day, my vision goes blurry all the time, and the ringing in my ears never stops. While this disease has wreaked havoc on me, I have found some good in it too. I have found a whole bunch of new friends that have IIH, and we are all there for each other. I have started making awareness headbands to sell and plan to host a walk next year to benefit the intracranial hypertension research foundation (www.ihrfoundation.org). I have learned to slow down and enjoy the little things in life, and to rely on others when I need to which has been a big step for me as a person. I may not like my diagnosis, but it has made me a stronger woman and better person.
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