u/Advanced_Talk3250

I feel like I’ve lost so much of what made me me. I can hardly keep up with those around me, I had to give up my dream job (atleast for now, I’m trying so hard to stay hopeful), and I’ve just become this angry, disheartened mess. Angry about how much of all of this is effecting me, that I can’t do as much as I’d like or used to do, that I have to base my activities around the severities of my symptoms on any given day. That I feel like no one around me is comprehending how devastated I am. That majority of my days revolve around appointments and blood tests now. Everyone around me is healthy and I’m so happy they are, but also so envious at times and feel alienated from them at times. That majority of people I’ve spoken to just always tell me to try and accept this, find peace with it, be happy I know partly what’s happening to me now, etc when I’m just not in the place to do that right now. I’m grieving. I’m viewed as negative if I express how heartbroken I am. if I’m not constantly the brave, inspiring, optimistic sick person then I make people uncomfortable, but sometimes I’m just so exhausted trying to hide how awful I feel. Most days I wish I could just give up.
I’ve been diagnosed with IIH, but specialists also have suspicions that I have myositis. Ontop of insomnia and bipolar 1.

Two months ago I started diamox. Two weeks ago I had to be admitted and given a lumbar puncture for the first time, which then had a leak and had to get a blood patch followed by more bed rest. My part time job I started a month prior began to cut my hours afterwards and management seemed to do a 180 on their attitude towards me, which is whatever I guess because I ended up having to quit anyway since connecting that all of my symptoms kept getting worse with working. Also worth adding, management blew up my phone while I was unconscious in the hospital repeatedly telling me to find coverage for my shifts which I found out is not legal in the state I’m in. My wife had to text them from my phone multiple times, repeating that I sent them a doctor’s note stating I have to go to the ER and physically can’t find coverage. I missed my one neuro ophthalmologist (only one specialist in my state) appointment that took forever to get into by being 10 minutes late because I was so dizzy and nauseous and struggled to locate which building of the multi-building hospital I had to go to so now I have to wait even longer. Which is my fault of course but just broke me.

I’m so tired. I feel like I’m failing at everything, I understand I may just be in the processing stage but it feels as though it’ll last forever. This level of exhaustion that never eases, this heavy weight in my chest constantly reminding me of the things I once loved so much being out of reach right now, not being able to show up for those I love as much as I’d like to, watching my wife taking on more while I’m stuck watching, and her getting mad when I try to push through, having to ask for help more than I ever used to have to, crying out of frustration whenever I have to slow down or stop whatever I’m trying to do when symptoms flare up.

I was supposed to move out of the US before all of these symptoms showed up, my family and I were so excited but my wife was too scared to move without knowing what was happening to me. So much of the money saved went to handling bills and expenses because I had to stop working and we ended up not being able to and now I can’t stop thinking about how I destroyed our dream.

I know there are so many of these posts and I’m reading them all, but just wanted to see if this is normal.
I had my first lp about four hours ago, they had me life flat for two hours and chug coffee. Whenever I did have to get up to use the restroom(diuretics, coffee, etc) I felt lightheaded and a pretty intense headache coming on that would dissipate once I laid down again. Is that normal for the first day or is it a sign that this may be rough? I keep seeing different responses on recovery and am not sure if it means recovery from headaches whenever standing or soreness from the lp.

Also a quick vent, my pressure came back in the normal range but on the high end. Probably did so because I’m on medication for iih so even though I understand they wanted to be sure I’m really bugged I had to go through this to begin with.

Trying to see if there’s a correlation between either of these symptoms and iih. I’ve been waking up with my face swollen everyday for the last year, and only swells up while I sleep. I kept getting told it was allergies or hereditary despite allergists and tests proving otherwise. The swelling goes down throughout the day thankfully but comes back whenever I sleep.

I’ve also noticed that my throat feels tight and voice gets hoarse and strained during certain situations. I’m still trying to pay attention to when it shows up but can say it’s definitely on bad flare days in general. It always accompanies feeling faint, lightheaded, a lot of muscle weakness, confusion/fogginess and feeling winded.

Currently not being treated but am diagnosed.

Does anyone else experience incredibly dry eyes in the morning that then tend to slightly get better throughout the day? It feels like someone took sandpaper to them In the morning, it’s awful and lubricant drops don’t even seem to touch it. It used to only happen on some days a while back but now it’s every morning. I’m also not on any medication as of yet.