IIH won’t stop me
Not many people know I was diagnosed with IIH in 2018. and it wrecked my life. I was at stage 4, losing my vision rapidly, and the condition was so "rare" that they didn't have much information about it.
I was completely devastated because I was going to have to learn how to live with this disease and blindness just by going to the eye doctor for a regular visit. My life completely changed, and they told me this would be something I would deal with for the rest of my life.
My sister Arica went with me to the doctor's appointment, where they looked to see how severe my vision was. That doctor came in with all these student doctors and found my right eye was deteriorating, and the main vessel was dying. I was going to lose my sight first in that eye, but the left eye may be saved as long as I took the medication they prescribed. When they left that room
I tried my hardest to not cry, and my sister looked at me and lost it 😂
"You will see; you will be ok, you won't lose nothing. God has the final say." We spent the rest of 2018-2019 praying, testing, and keeping faithful to my healing.
For me, it was linked directly to stress, vitamin deficiency, and hormone imbalances. I had to learn what I was missing (without the doctor's help) and change my diet/ vitamin intake. The medicine they had me on was worse than the disease to the point I was ready to choose death over dealing with the meds and disease.
I spent days having deafening migraines, back spasms, tinnitus, and having brain fluid leak out of my eyes, nose, ears, and mouth. It's almost like you overate, and you have to throw up to release it and make room. That's what my body was doing. I wanted to die almost daily, but I made it through. I also lost a lot of my long-term memory and have issues with my speech and short-term memory which didn't help with the "you can make it through".
But my tribe kept me going, and around October 2019, I stopped the medicine and finally started getting better. I was in remission for the first time in 2020 but ended up having symptoms in early 2022. I was stressed again, and my body was not happy; the more I internalized, the worse it got. The doctor wanted to put me back on the meds and put in a brain stent to help relieve pressure, but I denied all dat. I knew if I could do it before, I could do it now, and I did!
August 2023, I was symptom-free again! This disease is still rare, but it's getting more traffic behind it, prompting them to fund more research.
I'm not going to go through this for the rest of my life, and I hope the rest of the people suffering from this disease are freed from it, also.
As of today, much of my long-term memory hasn't come back, and my speech and short-term memory have improved. Thank God.
If I had given in, I would have missed out on this part of my life - Healed.
If I gave up, my son would have no parents right now.
No matter how the road looks, keep going. Dealing with an invisible disease that attacks your brain is defeating but not impossible. Roll with the good days and rest with the bad; you will get through it, I promise.
When I first heard the words 'Idiopathic Intracranial Hypertension' (IIH), it felt like a foreign language. Honestly, it still sounds like a mouthful! But understanding what it truly means was the first step in my journey. Essentially, 'idiopathic' means they don't know why it happens – which can be incredibly frustrating. It's when the pressure of the fluid around your brain and spinal cord (cerebrospinal fluid) builds up without any obvious reason, mimicking the symptoms of a brain tumor. That's a scary thought, right? One of the most terrifying aspects for me, and for many IIH warriors, is the impact on vision. The increased pressure can push on your optic nerves, leading to papilledema, which means swelling of the optic nerve. This can manifest as blurred vision, temporary vision loss, or even permanent blindness if not managed. I remember experiencing rapid vision loss, and the fear was immense. It's not just blurry; it can be like blackouts or tunnel vision, and it's a constant worry. If you're noticing any changes, please get it checked out immediately. Early intervention is key to protecting your sight. Beyond vision, IIH brought a host of other debilitating symptoms into my life. The migraines were unlike anything I had ever experienced – truly deafening, as I described in my story. They weren't just headaches; they were accompanied by nausea, sensitivity to light and sound, and a feeling like my head was about to explode. Another symptom often associated with IIH, and one that can be incredibly disorienting, is vertigo. While I didn't explicitly use the term "vertigo" in my initial story, the brain fluid leaks and pressure sensations I described often coincide with dizziness and a feeling of imbalance. It's like the world is spinning, even when you're standing still, making simple tasks feel impossible. Living with IIH isn't just about managing physical pain; it's a mental and emotional battle too. There are days when the fatigue is overwhelming, or the 'brain fog' makes it hard to focus, impacting your short-term and long-term memory, just as it did for me. Finding your tribe – people who understand what you're going through – is invaluable. Whether it's online communities, support groups, or just a trusted friend or family member, having that emotional backup is crucial. I learned that accepting help and leaning on others isn't a sign of weakness, but a sign of strength. For anyone newly diagnosed or feeling defeated, remember this: you are not alone, and IIH does not define you. While there's no single cure, advocating for yourself and exploring different approaches, like dietary changes or stress management, can make a huge difference. Don't be afraid to question your doctors or seek second opinions. Understanding your body and its unique response to this condition is powerful. Awareness, symbolized by the IIH ribbon, is growing, and with it, more research and hope for better treatments. Keep fighting, keep advocating, and keep believing in your ability to find your path to remission and a full life.
I’ve been diagnosed with this back in 2020 it was so much worse for me then but I’m doing so much better today I have spots in my vision, I didn’t know memory was linked to this? I’ve been struggling to figure out why I can’t remember my childhood… or like yesterday I had a really good sermon and I couldn’t recall