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My #IIH Diagnosis Story

Before recently, I’ve never been someone who had any physical health issues. I’ve dealt with my fair share of mental health struggles, but I have a great support system and honestly was super excited to finish out high school, become a camp counselor this summer, and move on into college.
Throughout March I started to have upper back and neck pain as well as double vision. I, thinking it would just go away (honestly I- why did I think that?!?), just kept living my life in a pandemic as best I could. But the pain and the double vision got worse and more frequent.
My family and I first tried a chiropractor for the back and neck pain, and she said that it was due to a concussion I had last year and that a lot of bones in my spinal column were out of alignment. She also said that this was causeing the double vision.
It was when my eye physically shifted over that we went to an ophthalmologist who within the first ten minutes said I was going to need to go to the er the same day. The appointment was at 3pm, and we left the ER at 2am with a diagnosis. This, naturally, was after a lumbar puncture that took three attempts and an opening pressure of over 55.
Did I mention this was two days after my 18th birthday?!? Anyway, they gave me a prescription for a pretty average dose of diamox and sent me on my merry way and I thought that would be the end of it. Over the next few days, the pain and double vision got better, then increasingly worse.
I was back in the ER three days later, and was admitted for 5 days to the hospital. During that time, I had two more lumbar punctures (opening pressure 56 and 20, respectively) and my diamox was increased to 4000 mg a day.
I left the hospital on April 2 and I have not been able to return to normal activities due to symptoms and medication side effects. I am not in school, not creating videos for my YouTube channel, not working, and pretty bummed out about it, honestly. I’m exhausted 25/8 and so my bed has become my favorite place (and the place I am writing this from).
I do see the next level of specialist on May 6th, so hopeful that they can lower my dosage then!🤞
I wanted to share all this because I was curious who else out there is like me, and would love to get to know you!
#IIH #iihwarrior #RareDisease #IntercranialHypertension #idiopathicintercrainialhypotension #Diagnosis #mystory

1 comment

My world is changing #IIH

I have always been in pain, as long as I can remember, I used to cry myself to sleep when I was a child with arthritis pain. Later cronic fatigue and Fibromyalgia joined the party, bringing their mate depression along for the ride. But I pushed through, it's all I've ever known. When people say they remember what it was like to be pain free I can't relate at all.

But everything has changed this year. This year has pushed me to my very limits. 2018 was a good year, I think my Fibromyalgia was starting slowly to get better, I'd recover quicker from activities and was less tired. Then in December my once or twice a quarter migraines started happening every day. I thought it was stress, I was looking for work, my grandfather was dieing, packing to move house and the dreaded letter from the benefits moving me from DLA to PIP arrived.

So I suffered till after the funeral in Jan and headed to the opticians for a check up.

An hour later I'm in hospital, having test after test, the realisation that I'd already lost some vision without realising.

Two weeks later I'm out of hospital, medication in hand and determined to cope. It's nearly July, and pain is the least of my worries, I've lost most my peripheral vision, I have black spots and bleared vision, my hearing is messed up, I have super sensitive painful ears that can't hear some sounds and constant tinitus that is disorientating. My hands and feet are numb from the medication and my sense of smell and taste is off. I have no balance, walls are my friends now.

Pain I can cope with, but I could still experience the world as normal, now I can't eat what I want, can't see well, can't feel fine textures, can't smell flowers, can't hear whispers. My whole world has changed.

The neurologist says some of this might improve, I might get better, not my eyesight, but hearing and touch, but for now to save my sight I have to persevere. I have to live in this changed world.

I will cope, I don't know how but I have to.

#IIH #idiopathicintercrainialhypotension #cronicpain #Disabled #RareDisease

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