Symptom Tuesdays

    This is the first post of a series I would like to start on this blog: Symptom Tuesdays. This is a chance for me to talk about symptoms that I have had from IIH (but I'm not gonna knock you if you share some of yours in the comments down below!)
    This week, I would like to talk about the number one complaint (and first sign) of IIH: headaches. Now, before you hypochondriacs start getting scared because you have constant headaches, I'm talking about a certain kind of headache. When you have IIH, headaches feel like your brain is being squeezed from the inside out, because that is quite literally what is happening. You have excess CSF in your ventricles, trying to get out.
    Headaches can range from "I can pop a couple of ibuprofen to make it through the day" to "OMG I am dying." "I can pop a couple of ibuprofen" type of headaches are headaches we get on the daily. They are annoying but not debilitating, unless you forget to time your doses of ibuprofen correctly, then they are annoying until the ibuprofen kicks in.
    "OMG I am dying" headaches tend, for me at least, to mostly be incredible sensory headaches where I want to murder my boyfriend for chewing pretzels in the same room as me. These headaches are so incapacitating that members of the support groups I am in, refuse to call them headaches as people who do not experience their brain being squashed can't really relate to the pain and tend to just write it off when you tell them they have a headache (as a result some use the term flares instead). You see double, you can't stand people even whispering in the same room as you, and even morphine administered by a doctor barely takes your pain down from an 11 on the Wong pain scale. Do you know how bad pain has to be for morphine to barely ease your symptoms and pain?
    Headaches, or flares, are some of the most constant and persistent of all of my symptoms. And if you have minimal treatment/no treatment, they are some of your biggest hurdles. But remember you can get through it. You're a warrior, with a pain in the ass disease.

Video: It's hard to visualize a headache, it's even harder to get one on camera and explain it. Here you see a video I sent to my boyfriend explaining why I could not get over my sensory headache. The cause? Our annoying cat, Yetti. We swear he's part Siamese because of his yowl. Here you see that I have not even brushed my hair as just the pressure from the brush hurts my head and makes the situation worse than better. 


Disclaimer: I am not a doctor. I have no medical background beyond being in and out of medical offices. I am just relaying what I have learned from my doctors and the internet, this article is not meant to be a diagnosis of any sort. If you suspect you have IIH, please speak with your doctor

What's It Like To Have IIH

    Disclaimer: I am not a doctor. I have no medical background beyond being in and out of medical offices. I am just relaying what I have learned from my doctors and the internet, this article is not meant to be a diagnosis of any sort. If you suspect you have IIH, please speak with your doctor.

    IIH stands for idiopathic intracranialhypertension. In non-medical speak, it means that you have unexplainable pressure on your brain. It is caused by excessive cerebral spinal fluid (CSF) on the brain, however doctors do not yet know what causes the excess CSF.

    Some people call IIH a disease, some call it a condition. I, personally, call it a pain in my ass. IIH not only causes intense headaches, but it can also cause so many other issues with your body. For example, earlier this year I was hospitalized and had a urinary catheter inserted because my nerves gave out in the lower part of my body.

    Your brain controls everything in your body (duh) so when your brain starts malfunctioning, so can the rest of your body. This not only means that you are prone to very horrible headaches but also to other nerve related issues.

     IIH is like having your brain squeezed from the inside out at all times. No matter how much ibuprofen or Tylenol you take, there is no relief beyond actually removing the pressure and excess CSF from the brain. As a matter of fact, you can have so much CSF that it will leak via the eyes and ears. And if that sounds painful, that’s because it is. I once had CSF leak from eyes, it hurt to open my eyes, it hurt to close them and my cheeks felt like they were on fire as the tears rolled down them. You can normally tell that it’s CSF by how it burns and hurts, however you can test the suspected CSF with a diabetes glucose meter. If you don’t get a reading, its tears and you need to see a doctor. If you get a reading, it is most likely CSF, and you still might need to see a doctor anyway because your pressure is way too high.

     Overall, IIH sucks and if you suspect that you have IIH, please take with your doctor to get an MRI/MRV and a spinal tap in order to rule out any other serious medical problems. Remember that another term for IIH is pseudotumor cerebrei and you need to rule out an actual tumor, as IIH mimics a tumor.

Source

About This Blog

    I am diagnosed with idiopathic intracranial hypertension (IIH) also known as pseudotumor cerebrei. While I was going through the diagnosis faze, I was just inundated with nothing but medical journals and very technical websites because it is such a rare disease. As a result, I wanted to start a blog and a Youtube channel so that other people that are diagnosed with the disease don't feel as alone as I did when trying to find info.
    My goal of this blog is to update it and give other sufferers a non-medical perspective. Of course with it being a disease there will be some medical words, pictures and videos such as the one above, but I, of course, will try to explain it as simply as possible. The video above is a cat scan of my VP (ventriculoperitoneal) shunt, which is basically a machine that is attached to a tube that goes into the ventricles of my brain to siphon off the excess fluid on my brain. The catheter then runs inside my body and into my stomach cavity where the excess liquid can be absorbed.
    IIH is a rare brain disease. It causes a buildup of cerebral spinal fluid (CSF) in the ventricles of the brain which causes the brain to act like it has a tumor, hence the alternative name for IIH, pseudotumor cerebrei, No one knows why the brain produces excess CSF and there is no cure for it, only treatments such as surgery or medications.
    Once your diagnosed, you're stuck for life in a sorority that is not of your choice. Those of us diagnosed are all stuck with it and only have each other to lean on. Not many other people can relate to having the symptoms of a brain tumor, but not actually being able to do anything about it, because the tumor isn't really there.
    It isn't easy.
    But it's very hard for it to get any worse.
    Welcome to the hell that is IIH.

Finding Help on Campus

By: C.A. Printup
@DontWriteDown
dontwritedown@gmail.com

    At Indiana University of South Bend, accessibility can be an issue. Accessibility is especially hard when you do not have friends that you can vent about it to. That's why students and teachers have joined together to make the Student Disability Association.
    In an interview with staff adviser Kevin Griffith, he stated that "this club is just in it's beginning. The first few meetings this semester are to start recruitment and become what we really want it to be."
    The SDA has already met twice this semester and at the meeting there were two students who showed up. While this is a low turnout, students are encouraged to join to be the founding members of the movement.
    "I hope that this group will be more focused on social justice," Griffith said. "Right know we are more focused on recruitment and socializing but I hope that it will be more focused on the social justice aspect."
    The SDA does not have much information up on their TitanAtlas page, however taking a quick look at their Constitution it states that their purpose is to "provide a safe place for the students and their allies to not only educate themselves and others in the community, but also stress self-advocate and empowerment."
    While the group does not meet a lot right now, students can sign up to get notified about upcoming meetings by going to the student's disability support services in the administration building on campus.