u/Exciting-Shoulder-22

I’m no stranger to chronic illness, however I have learned to live with my other diagnoses, but the IIH diagnosis is new to me 🤪!

I think i’ve had IIH for awhile, but my symptoms finally stopped being ignored by my doctor when I started having vision loss. On top
of that, my health has been much worse since I started diamox - so I’m juggling that and using intermittent FMLA time for my really bad health days.

I had a conversation with my supervisor right before my hospitalizations and he said I was on track for a promotion and that I had nothing to worry about. I’ve been keeping up with my workload, but have been out a decent amount of time (probably a total of 3 non-consecutive weeks over 5 months). Anyway, I found out Monday that I didn’t get the promotion and I was disappointed, but thought - maybe next time, etc etc. Today I found out that everyone else in my position in my department was promoted…except for me 🫠

When I have a chance to get my thoughts straight, I am going to address this (from a standpoint of curiosity) with my supervisor, but right now I am just feeling a little devastated.

I wanted to share with y’all just because I know you understand how hard things are with IIH. I’ve missed out on a lot of personal things too, so this is all just insult to injury! I’m frustrated and sad.

I appreciate this community so much, you all truly make things more bearable ♥️

About 1 month before I was began my diagnosis journey with IIH I had a crazy amount of nerve pain on the left side of my face and on a large portion of my right arm and arm pit. I went to urgent care at the time and ultimately they were unhelpful.

During the process of my IIH diagnosis, I let them know about what happened and they didn’t feel like it necessarily had anything to do with my IIH (spoke with neurologist and neuro-ophthalmologist). Which I feel like is strange since they do that little tissue across your face test and in my case, I definitely have less sensation on my left side (also my swollen optic nerve is worse in my left eye).

I still have residual nerve pain in my face (though not in my arm, and nothing near as bad as when it happened at first).

Has anyone else had this symptom and had a more satisfactory answer from their medical team? I suppose I’m more curious than anything else.