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