my diagnosis story āŗĖ*dą¼ā¾ć
I was diagnosed with my condition (idiopathic intracranial hypertension) in June of 2023. prior to my diagnosis, starting around 2020, I was frequently seeing my doctor due to symptoms I was experiencing and couldnāt explain. I was diagnosed with physical and psychiatric disorders that my doctor tried to say were causing these symptoms, and I still agree that those diagnoses I received exist in addition to my brain condition, but they werenāt explaining certain other symptoms I was having whatsoever. I was having constant nausea, I was gaining weight despite eating hardly anything at all (partially caused by my PCOS too. I cannot win.), I was sleeping 16 hours a day back when I was still in school and not working, I was lightheaded whenever I had to bend down or crouch, eye pain, visual flashes of light or blurry vision, whooshing sounds in my ears, and I was getting constant headaches at the same place in the back of my skull that I could not get rid of with OTC pain medication. the diagnoses I received were ADHD, depression, OCD, sleep apnea, IBS, and PCOS to name a few. Some nurses and doctors even told me I was just sleeping a lot because I was young, which was upsetting. At one point in 2021, I went through a very traumatic experience that affected my mental health severely. I was struggling with mental health problems on top of my physical symptoms, and it got so bad that I started to experience frequent tachycardia (fast heartbeat during rest) and was wearing a heart monitor for a while. But despite all of this, I was stumping every specialist and doctor that I saw.
That was until June 2023. I had a regular routine, not at all special annual eye appointment one day after a shift at work. I was excited for this appointment because I had been wanting to get a new prescription for my glasses. It started off as any other regular eye appointment until we got to the eye dilation and examination. I remember my optometrist shining a light into my eyes, using a microscope to check them. In the past, this part of my eye exam took about 30 seconds maximum. However, she was going back and forth, almost like she was stumped by something she was seeing. She would look at one eye and hold very still, watching it intensely. After an agonizing 2 minutes or so, she stops and grabs a color blindness test. I was confused and a little worried, but kept my thoughts to myself as she had me answer some questions. I wasnāt colorblind, and she looked even more stumped. She then took a second to think, turned around and said, āIām gonna order some additional tests for your eyes, it seems that your optic nerves are swollen,ā and off she went without further explanation.
I started getting nauseous at this point with nerves, confused as to what that meant and what testing she would need to do. I took the waiting period as a chance to Google what swollen optic nerves were and I really wish I didnāt. The first result was brain tumor. I felt my heart drop to my stomach. Next, it was MS (multiple sclerosis). I quickly closed the tab and held back tears, hoping that it was just a misunderstanding and that the imaging would prove that nothing was wrong.
I did a couple eye checks, more excruciating time passes, and Iām back in the eye exam room waiting for my optometrist to come back. I will never forget the way she came into the room, took a very deep sigh, and sat down in her chair. She scooted closer to me, leaned in and told me āI am so sorry, but we need for you to go across the street to the ER. I really want for you to have an emergency MRI. I am concerned about the pressure inside your head and I want to figure out why your optic nerves are swollen. They know you are coming.ā I started tearing up but held it all in, and she escorted me to my mom who was in the waiting room. And thank god she was there, because usually I always go to my appointments alone. But today I needed a ride there, and thank GOD that I did. As soon as I saw my mom, I burst into tears. I donāt remember a whole lot of this part, but I remember I told her a brief summary of what happened and just kept repeating to her āsomething is really wrong, I have such a bad feeling about thisā the entire way to the hospital.
I have been to this hospital before for several minor things. The wait times at this hospital are known for being absolutely god awful. But I knew it was serious when they called me back within seconds of me checking in. Instantly they were asking me a bunch of questions, doing neurological tests on me (touch your finger to your nose, walk in a straight line, follow my finger with your eyes, etc). The worst part is that the doctor I was seeing was emotionless and blunt. I asked if there was any way this could be something else, and he just straight up looked at me and said, ābrain tumor usually.ā I became so sick with anxiety that they gave me some sort of medication to calm me down, but it did absolutely nothing. I was petrified.
By now it was time for my MRI. I will admit, I can be very dramatic. But I have the worst health anxiety of all time. The moment I was put into the machine for my MRI and forced to lay completely still for 45 minutes, all I could do was think about what I was missing out on. If this turns out to be something lethal, I would never be a mother. That thought was haunting me that entire ER visit. I have wanted to be a mother since I was a child. I carried baby dolls with me every where that I went as a child. I have read parenting books and articles as a teenager despite having no plans to have children. I babysat and nannied just to practice my caretaking skills. Being a mother is my dream, and all I could think about the entire time was the possibility of me never being able to be one. I thought about my childhood cat that may outlive me. I thought about my dream of being a content creator and how I would never have the chance to fulfill it. I started thinking about all the things I was scared to do throughout my life and how much I would give to do those things. You donāt realize how important your life is to you until you think itās going to be taken away from you.
To save you the dramatics and get to the point, they ended up ruling out a brain tumor completely as well as MS or any brain swelling. So that of course begged the question of WTF is it? And that was when I officially got the diagnosis of IIH.
Idiopathic = āhappens for no known medical reasonā
Intracranial = āinside the headā
Hypertension = āhigh pressureā
My body is unable to properly drain my cerebral spinal fluid, causing it to build up in my head and put intense pressure on my brain and optic nerves (hence the swelling.) this condition used to be called Pseudotumor Cerebri because all symptoms mimic a brain tumor. I am at a high risk of losing my vision due to my optic nerve swelling. But the part that sucks the most? Itās incurable. Remission is a possibility, of course, but you can never fully get rid of it.
I was told I needed to get a spinal tap, a procedure where they take a needle and stick it into your spine to drain the fluid and check the pressure inside your head. Donāt even get me STARTED on how awful that was (and I just learned I have to do it again next weekā¦.;-; ) The spinal tap itself isnāt that bad, but I had an uncommon reaction to the procedure that absolutely sucked. When you get a spinal tap done, your body is supposed to create a āclotā or āplugā naturally (like it does when you get your blood drawn, for example) to stop the fluid from leaking out of your spine. My body thought it would be absolutely awesome to just⦠not do that. Because of this, several days later, I was leaking spinal fluid out of my damn spine TOO QUICKLY which at first felt great but quickly started to cause the worst headache Iāve ever had ever in my life. My brain was essentially āsaggingā in my head from lack of fluid surrounding my brain. So there I went, back to the hospital I go! At 4 in the fucking morning. By myself. Trying not to puke inside the Uber from pain.
And get this! The only solution besides enduring the headache and holding completely still for a week in hopes of your body creating the clot in your spine? An epidural blood patch. What is that, you ask? The most barbaric procedure of all fucking time. Basically, the take this giant vial and fill it with blood straight from your arm. Then, they take that blood and, using another giant needle, stick it right into your spine and putting the blood where the hole is. The purpose of doing this is to create a natural blood clot to close the hole, stopping the leak. But hereās the thingā¦.you canāt really numb your spine. You can numb everything around it, but thatās about it. So trust me when I tell you that the feeling of someone forcing blood into your spineā¦.it felt like someone is lighting a knife on fire and stabbing you in the lower back. The entire time you can feel this sensation from the nerves being touched, and the best way I can describe it is like lava dripping down your back and into your booty cheeks (lmao). I wish I asked to be sedated. Honest to god, I hope I never experience it again. But despite that traumatizing experience, it worked instantly and I felt relief immediately. So thereās that, I guess.
Fast forward to now, Iām still dealing with this condition. Treatment has been rocky. Lots of trial and error with medication, new side effects creeping up, so on and so forth. I have a recent update regarding my condition I plan on sharing soon, so keep an eye out for that. But other than that, youāre all caught up! Welcome to my silly little brain condition and constant madness.
If you genuinely read this far, I wish I could hug you so hard. It means the world to me that someone takes the time to read my story, especially being the chronic yapper that I am. Thanks for sticking around, sending you my love :)
- venus ļ½”Ėā§ļ¾Ū°Ėā½Ė