Well.. I spent the day at the ER yesterday. Fortunately, they saw me and immediately got me a room. I could barely speak and spent my stay all curled up in a pitch black room with a towel over my head. The staff were very nice about working in the dark.
I had the most agonizing headache of my life with eye and skull pain. I’d say a 9 out of 10 and wish there was a better word than “headache” to call it. Anytime I’d move my head or change position, the pain become even more severe and throbbing and it felt like my eyes would explode out of my head. I barely opened my eyes all day. Light and sound are painful. Today the headache is still horrible, but the strong pain meds are allowing me to look at my phone long enough to type this in my dark room. I can talk in short sentences every once in awhile, unlike yesterday. The pain is a 7/10 and when I change positions, a 8.5/10. I don’t plan to find out if it is still as severe without the meds as it was yesterday. I slept about 40 minutes at a time last night.
I was and am still vomiting and the meds aren’t working to stop it. That’s very problematic for my POTS. I got fluids yesterday and hope I can keep some down soon today so I don’t have to go again today. My blood pressure yesterday wasn’t cooperating at all either, which isn’t a problem usually as long as I remember my meds, and was 80/60 or something like that.
I’m going to be okay. All of these things are normal side effects and I have no regrets. Next month we will run the IVIG slower and I will take steroids beforehand. The IVIG day itself was comfortable except for some vertigo.
I’d type more but typing this is making me more sick pretty rapidly! Just wanted to update everyone.