Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH cirrhosis. My episodes were isolated, when I was not having one I was perfectly cognizant, and I either woke up with that fog or I could predict it coming because I would get a very upset stomach and feel tired. Since they were predictable I was able to drive right up until prior to having a transplant in September 2016, even driving alone on 3 hour drives up until the last summer before my transplant. At that point, I told my husband I did not feel comfortable doing that anymore. That was after having to resume taking lactulose.
I had a number of hospitalizations also due to HE episodes. Most of my episodes were mild enough that I could just sleep them off but a few were more severe and landed me in the hospital for about 3 days generally.
Has your hepatologist considered putting you on xifaxan? After I was diagnosed I went to Boston, to Mass General Hospital, and the hepatologist there prescribed xifaxan. I was able to drop lactulose and the xifaxan alone kept me from having an HE episode for almost a year. Then when I did have another that was signal that my liver had deteriorated further and I had to resume lactulose along with the xifaxan.
I was prescribed Lasix and then Spironolactone two or three months prior to my transplant. Prior to that my fluid retention did not require it. At that point though, about six weeks before I received my transplant, I gained about 35 pounds of fluid.
If you do have any questions, it sounds as if we have some common problems from your situation -- have you been diagnosed as having cirrhosis? -- please feel free to ask away.
JK