The story of Madeleine
It seems like everyone around me is normal.
They wake up in the mornings, feeling pretty okay. Refreshed from last night’s sleep. Charged. Perhaps they get out of bed, pour themselves a cup of coffee, grab the newspaper, and settle into their breakfast nook. Bacon, eggs, and toast gets them going. A hot shower. Clean! Fully awake! They take the dogs for a walk around the block, waving at the neighbors.
I’d give up an awful lot to expect these calm, regulated mornings when I wake up.
I wake up in the mornings, feeling like I got run over by a semi truck in my sleep. I become dizzy the moment my eyes open and I stay dizzy throughout the entire day. The thought of sitting up and putting my feet on the ground is nauseating. The pounding in my head is relentless. How has my head not split wide open from the pain & pressure? My ears are ringing. The only light in the room is from my alarm clock and it’s enough to physically make my eyes hurt. My mind is spinning from the lucid dreaming I’m coming out of. My mouth is so dry that I’m struggling to breathe. My face, hands, and feet are tingling so badly it feels as though someone is sticking me with needles. And I’m so tired ALL THE TIME. So, so, so tired. I can’t put this type of fatigue and exhaustion into words.
Idiopathic intracranial hypertension. It’s a rare neurological disorder, offering up a host of debilitating symptoms. I was diagnosed on December 10, 2018. I’m the new kid in the cafeteria, trying to figure it all out.
It just took me about 5 minutes to remember the name of the disease I have.
Oh, did I not mention I suffer from horrific memory loss? It affects my personal relationships & job performance.
Here’s the simplified explanation: The space between your brain and skull is cushioned with spinal fluid. Mine isn’t draining properly, causing a buildup in fluid, which makes pressure in my skull increase to a damaging amount. I have all of the symptoms of a brain tumor, but there isn’t a tumor present, which is what makes it idiopathic. Doctors don’t know what causes it & like cancer, it has no cure.
And it is absolutely excruciating to live with. Every day is a big, fat punch to the face.
My symptoms started in August 2018. I’ve always struggled with headaches and migraines, but something about this experience was off. Everything was different. I knew something was very wrong, and I could feel it deep in my bones.
So I started with my General Practitioner and am now nestled safely with a Neurologist that I trust. Every doctor in between tried to downplay my symptoms, passing it off as your everyday migraine or severe sinus infections/pressure that wouldn’t budge under antibiotics. Thankfully, I put my foot down and demanded tests that would provide more answers.
Blood tests showed vitamin B12 and D3 deficiencies, as well as Vitamin A toxicity. MRI showed no issues. CT scan showed abnormalities. Opthamologist visit confirmed papilledema. Finally, a spinal tap (lumbar puncture) confirmed a significant increase in my head pressure.
First method of treatment was to try a medicine that would essentially turn you into a walking raisin. It decreased spinal fluid, which decreased the pressure buildup. You’re started on a very low dose that gradually increases as your body “gets used to the side effects”. I swear on everything I’ve ever known, this medicine is mixed by Satan himself. It takes all of the symptoms you are already experiencing and magnifies them by 1,000%. It also adds in a few extra, odd side effects such as the inability to sweat, constant nausea/vomiting, severe mood swings, changes in smells & tastes (carbonated beverages taste metallic and peppery), sun intolerance/easy sunburn, insomnia, loss of appetite, neck pain, and the “igloo”. The igloo is a side effect because I am ALWAYS cold, no matter what. And, before you think it… no, this has nothing to do with the fact that it’s February outside. Yes, February is cold. But, I know myself and I always run hot, no matter the season. Now, wearing tons of layers inside with the heat on full blast and a piping hot beverage, I’m still teeth-chattering cold.
Over the counter medications do NOT work. I repeat, over the counter medications do NOT work. Pain relievers do not relieve pain. Glasses do not help the blurred & double vision. Motion sickness & nausea treatments don’t help the dizziness and vomiting. Literally nothing works.
The second method of treatment is brain or spinal shunting/stenting. This involves placing teeny tiny tubes in the brain or spine to help aid in draining the spinal fluid. It’s a high-risk surgery with a huge chance of experiencing complications. Even with these risks, people opt for the surgery because the medication is so excruciating to live on. So far, as much as I’ve wanted to just give up, I’ve pushed through on the medicine.
However, I’d say the worst of it is the papilledema. Papilledema is swelling of the optic nerve caused my the increased pressure. In other words, the pressure in my head is flattening the back of my eyeballs (ew, right?) and damaging my optic nerves. Unfortunately, I kind of need those optic nerves to see. The damage so far has caused severe blurred vision and double vision. It’s frustrating to deal with on a daily basis, especially as I go to work and stare at a computer screen all day. If the pressure doesn’t decrease fairly soon, my vision will become compromised and I could be blind for the rest of my life.
I just want to fit in.
Instead, I woke up one day in August with a rare neurological disease. It was random. Unexpected. Definitely not in the plan of how I saw the rest of my life panning out.
I want to do all of the things that my peers in their mid 20’s are doing. I want to enjoy theme parks. I want to go on long hikes in the snow. I want to start a new, odd hobby. I want to train for a run. I want to go scuba diving. Maybe volunteer or taking a cooking class. I want to try new happy hours with my friends after work.
Instead, I’m in pain. All the time. I’m worried about what will happen to me at any given moment.
But you wouldn’t know that looking at me a majority of the time. I’ve gone pro in hiding how I feel. I plaster a smile on my face and force myself to get out of bed and do the things I need to do as my life progresses.
That doesn’t mean there isn’t a chronic, invisible illness behind this smile.
It’s there and I’m thinking about it every moment of the day. I’m constantly scoping the area around me to find the safest place to throw up or pass out if I had to. I always carry medicine in my purse to slow my heart rate when it gets too high. I have to plan my nights out with friends around the last time I’ve eaten or how badly my head is pounding.
We all struggle with different obstacles, and this is mine.
Thanks for looking.