I didn't even realize that I had posted this thread so long ago. I think I made a more recent post this year.
But I wanted to reply to the last few who have commented.
I had a VP shunt put in last September after my LP ones failed. My VP shunt blocked twice and I needed revisions last December and January... as well as a number of adjustments (those were easily done by a special magnet).
I have been suffering from a lot of cognitive problems since I got IIH. My disability carrier finally paid and arranged for detailed neuropsych testing which was done in June of this year.
I am now officially diagnosed with brain injury. Although I tested in the superior range for my mathematics ability, and high average in other areas, my tests revealed that I am mildly to severely impaired in the areas of: memory, working memory, auditory memory, visual memory, multi-tasking, and coping with multiple inputs. I have severe sensory hypersensitivities, especially to sound. I have a hard time functioning in many places. The verdict is that I am considered medically physically disabled and it is believed this is of a permanent nature, although it does say that only time will tell, as I may be able to recover some skills and adapt with time and occupational therapy.
I know now that it wasn't all in my head. But I am also upset that I've lost things. But what makes me even more upset is that looking at some of the medication my doctors had put me on, some of that may have been a contributing factor or the very reason why I'm cognitively impaired. I didn't know that the benzodiazepines that I was put on (ativan, oxazepam, and earlier on I was on clonazepam) - they are only intended for short term use and are linked to cognitive impairment. I was on them for 3 years!!! I fought so hard to get weaned off of them, and now I'm completely benzo free.
A lot of my abilities have returned. I can think much better now. I can hold multiple ideas at one time and my ability to multi-task has increased. I no longer get lost. I can remember much better than before. Now... although I can't say for certain that it's all due to getting off of benzos, but I believe that was a huge thing that helped. Also, my brain could have been recovering from the injury that it sustained. It could have been a combination of both things.
Either way, I'm doing better. The sensory sensitivities are terrible. I have had to move multiple times. I have been trying to find a quiet place to live, as constant repetitive sounds seriously drive me crazy. I can't handle it. The last place I moved to was going to be so good, but then the landlord placed their hot tub right outside my place and left it run 24/7. The buzzing and vibrating sound that never ended was just so overwhelming. So now I'm in a place that isn't great and am hoping that the new place I move to in December will be better. But this is all costly on a disability income, and my 13-year old child is getting so frustrated with having to move around so much. But there isn't much for decent, good, quiet housing here. I'm so frustrated. I wish I wasn't a single-parent. I wish I had someone else to help with all the rent and expenses and someone to share my life with :(
Anyway, I wanted to share all that. I hope you all are doing well :)