Hi
@crypt0cu1t, as we "discussed" I also have Autoimmune Encephephalitis, but mine presented in a different way than yours. However, something you mention is something I've been having and just figure they'd go away on their own...the pressured headaches. As I told you, I believe that it depends upon which part of the brain is affected. You sound very much like the young lady who wrote the book, BRAIN ON FIRE.
I understand that you can't read it yourself, but perhaps your girlfriend could read it and underline important symptoms for you. Also, in the book is the hospital and the name of the doctor who recognized what she had and helped her on her road to recovery. I can't tell you how sorry I am that you're having to fight this once again.
Personally speaking, I'd be inclined to get in touch with the young woman and find out the meds she was put on at the time, and I do know her recovery period was extended...probably like you're describing. Or, if you can and want to, perhaps you could have an appointment with the doctor who diagnosed her. She was so, so close to being sent to a mental institution, one meeting saved her and and her life. I'd make use of that knowledge as much as possible. If I knew the meds, I'd tell you, but I don't have that and, to the best of my recall, don't think they were mentioned in the book. Still, I'm sure she would speak to you. Have you looked online for an Autoimmune Encephalitis group? I haven't, but I'm certainly going to do so now.
In my case, I was told I was drinking too much water and not taking in enough salt?!! OK, perhaps that's true, but I do know that's not the beginning and end of this story, and I like to find out what's at the bottom of a problem. I promise to try to find out for you, at least online, and do hope you have a good neurologist. That will be your best chance, although I'll tell you that I was seen by a multitude of specialists in the hospital and not one could figure anything out. A short synopsis of the young woman's book may help...I don't know, but I'd try.
Unfortunately, we're at the forefront of a new illness that not much is known about. I'm on strong doses of keppra, an anti-convulsant, taken two at a time, once/day. I also take Electrolyte Salts (don't overdo it) cut back on my fluids to 32 ozs. as instructed and eat a banana each day for potassium. I'm still not back to where I was before this all happened, but I consider myself lucky that my own neurologist was able to figure out the types of seizures (which left me unconscious for 2 days over 2 different times). He has his own troubles, and I'm touched that he took the time to follow my case, rather lead it. However, I should tell you that I've been seeing him for 35 yrs. Thus he does understand me and my different problems; not many doctors can do that.
OK, I'm going to go right this very minute and see if I can find an association online that may be of some help to you. In the meantime, don't hide this from your family or friends, you can't help it, not much is known about it, and you need their support....from a distance, at least until the immunization is a reality for most of us. And that's another question: Where does this leave us? Should we or should we not be immunized. I'll try to find some answers and will be in contact. Be brave, and think of the young woman who wrote a book about a new illness. You have a wonderful girlfriend by the look of your photo. Yours, Lenora.