I had difficulty when I first began experiencing "hepatic encephalopathy" from the ammonia level in my blood from protein buildup......I had only fleeting symptoms at first....just enough to know that something was wrong but didn't know just what. That is when it is a good idea to speak with the doctor he is seeing for his liver; when you suspect "something ain't right"..............

Again, we are all different and re-act differently to everything from food to drink to environment. I wasn't really "off in space somewhere" when I first began to have symptoms of HE but after a while, each episode got worse that the previous. Then, I would go back to being ok for a while until the next time.

The Lactulose has helped very much for me. I have short episodes and not very often. The episodes aren't seemingly serious and as long as I am with my husband, he watches closely and knows what to do if I get into trouble. I am confused especially with left and right.......I have to stop and "think" and realize this. It's not all the time just once in a while but is enough to take extra precaution and certainly enough to make me stop driving altogether.......(boo hoo.....t'was a sad day when I sold my littlel purple Cadillac Eldorado.......my dream car.) As long as it was sitting in the garage, I was always tempted to "just drive a short distance here or there" until my husband said, "NO MORE!" (and the doctor agreed with him)...........Oh well.........someday.......
Hugs and prayers...........CarolLentz

Thank you Carol for replying. I have to ask, did you know you were feeling off or did your husband tell you? And if so, what were your behavior changes like? My husband is not confused left from right. His symptoms are: hypersexuality, loss of interest in his responsibilities, depression, and somewhat spacey! Not sure if this is due to ammonia levels or a bipolar mania. He eats fine and is coherent to conversation. I did notice that he is walking slow and he appears to be a bit uncoordinated. Im just not sure and he refuses to go see a doctor so Im not really sure what to do. Is there anything I can do from home to alleviate the symptoms? Also, do the ammonia levels go up and down throughout the day or is it something that lasts until treated? Thanks for your help! I am so desperate to find answers!!!

I knew something was wrong when I started having HE from the ammonia levels. I didn't know what it was at that time and I believe it was pugdaddy from this forum who told me it sounded like HE so I asked the doctor at my next visit. The first really bad time, I vaguely remember what was going on for the hour and a half that it took it to dissipate. Some people, depending on the levels of ammonia and other things, don't readily come out of a HE episode.

I was in my own home.....and I remember that I was trying to go from the kitchen to the bathroom which was just at the end of a hall from where I sat in the kitchen. I couldn't determine which way to go, left or right. Then, I began talking to myself and when my husband came in after hearing me speaking, he said I had glassy eyes, a horrible sickening sweet smell about my breath and I was totally in a stupor. He sort of kept me in the chair (we are both handicapped) and he wouldn't let me up until he was sure I was not going to fall.) I guess we talked and I cried (I didn't make sense or so he said but he did what he could to appease me so I would sit still) and then, after an hour and a half, I broke out in a drenching sweat.......totally wet from head to toe and had to go to the shower. My hair was plastered to my head with sweat and my shirt was totally drenched. After the shower, I was totally exhausted and had to lay down and I fell asleep for several hours. My husband couldn't wake me so he left me be realizing I was on the bed and safe from falling. He stayed right with me.

When I woke up, I was starved......and I had very little recollection of the incident. I just knew something had happened.

The next time it happened, I was at a volley ball game with my grandkids. My husband went to the truck for something and when he got back into the gym, I was totally spaced but sitting by myself with nobody else around me. I have NO recollection of that incident. I just know that I was ok one minute and the next thing I knew, the game was over and people were leaving. I don't recall the game at all. I don't to this day know what the score was.

I visited my liver specialist at Cleveland Clinic a few days later and he put me on Lactulose 2X per day. I have had a couple of short incidents but nothing like those first two. Bear in mind, I don't have other psychological issues that I am aware of.......although I do feel depressed more often these days most likely due to the lack of ability to get around. That is because of my dystrophy, however, and not my liver disease (as far as I know).

I know that when I found out it was ammonia from eating protein foods, I immediately wanted to stop eating meats especially. My doctor had put me on a diet to include lean meats a few months before the first HE incident because he said I was losing muscle mass due to eating only vegetables and fruits and grains. I had been pretty much vegetarian for quite a few years at that point but I do love meat, especially red meat. My doctor warned me against discontinuing eating the lean meats, however so apparently stopping the source of ammonia wasn't the way to go after all. The liver specialist always asks me at each visit if I have had any other incidences of HE. So far, so good. I think I have had a couple of minor episodes but regained my composure on short order. I take the Lactulose religiously.

I don't mind that I have had to stop driving a car but I surely don't want to ever get to the point that I have to stay away from my grandkids due to HE episodes. We watch out for that at all costs.

I do wish your husband well. This disease has many symptoms and, 'tho we all seem to experience most of the common symptoms, every body is different in how they display the symptoms or when and why the symptoms come on. Again, the doctor would be able to help your husband (and you) better deal with his illnesses. Hugs and prayers..........CarolLentz

Thank you Carol! You have been very helpful and have given me a basis to work from. From what you described of your experience I do not believe my husband has HE. Today he is perfectly fine. He definately has a distinct smell but Im not sure I can describe it as sweet and horrible. Maybe he has mild episodes and just the beginning of his ordeal with HE. I pray that thats not the case but I know how cunning this disease really is. I will continue to monitor him closely and hope that I can convince him to go see a doctor soon. I know that we have a long road ahead and I want nothing more than to be informed about the symptoms and best treatment for him. Thank you again for your help and may God bless you for your willingness to share your experience.

Just to lighten things up....

Carol, seriously? A little purple El Dorado?

El Dorados were never little, they're like driving a tanker truck.

Seriously. My little Eldorado belonged to an elder lady who was dealing with cancer. Her husband had the car customized for her i.e. the dusty amethyst color (which was certainly not stock) and the pale beige interior. It was a '95 and, although the car was started and driven short distances weekly by her husband, it was in perfect, mint, showroom condition. She was sick and didn't get to drive it much but took so much pride in ownership of the unique car.

When her cancer returned for her in 2006, her husband wanted to buy her another Cadillac and they sold me this one. I was the first person they showed it to when the decided to sell it and I had the cash money in hand and bought it on the spot. It was every bit as good as it looked and served me well. I didn't drive it real often due to my dystrophy but it was my "independence" sort of and just knowing I had my own car that I could drive when I needed to was satisfying enough. It was beautiful.

When I developed HE, I had to sell it because the doctors said I should not drive anymore and we couldn't justify paying to have it stored. I didn't think I could trust myself to "never drive it" if it remained too close, so husband thought it best to sell it.

I had been used to driving huge, huge old cars like the Cadillac Fleetwood and we also had an older Lincoln as a 2nd car for a long time. Also, a huge station wagon for taking the kids with us years ago. I was used to big, long cars so to me, the Eldorado was "small". I don't know how old you are but, I am from a time when the cars were really BIG.........long, lowlying to the ground, etc. My Cadillac was just the right size, 2 door and full sized car but still, much smaller than I had been used to.

It was a real boon to the old ego to go driving with my husband in that little car (he is 6'3" tall and he had a horrible time getting in and out of it but humored me anyway). When someone would pull out to cut me off, I would remind him that "Purple Cadillac Eldorado's" always, always have the right of way even over the U.S.Mail trucks. He would laugh but I think he sort of half way wondered how much of it was teasing or was I really seriously thinking that I always had the right of way? It was funny...........Ahhhh.......the good ol' days.

When I had to have life saving surgery back in 2000, and I came so close to dying, I promised myself that I was going to get me a purple Cadillac......husband just laughted and said, "They don't make purple Cadillacs" and I told him that God had worked one miracle in keeping me alive against all odds and if He could do that, He could get me a purple Cadillac. Can you imagine the look on his face when, a while later he read the classifieds of our local news paper and saw an ad that read, "For Sale. Low miles, showroom condition, dusty amethyst (purple) 1995 Cadillac Eldorado with light beige interior?" Well, we drove right out (I think he had to just see it for himself) to see the lady and her husband and I drove home the most beautiful little car I can imagine. He HAD to agree that God does work miracles for he had just seen 2 performed with his own eyes..........I recovered from near death and I had a purple Cadillac Eldorado to boot.

This is 100% a true story. Nothing made up about it. In fact, nobody COULD make up something like this, do you think?

Hugs and prayers WTC and rummi and all..........Just had to explain to WTC that "Yes, they do make little purple Cadillac Eldorados."

Now the rest of the story........(as Paul Harvey used to say)......I sold the car to my brother's lady friend. She is sick from a neck problem and can't drive it very often so, once again, the little purple Cadillac sits in the garage.......showroom new........waiting for someone else to come along who might be interested in a unique kind of car. Who knows? I might get to buy it back from her someday.

LOVE the purple cadillac story. :)

Oh Carole - I LOVE that story. You'd told me previously about your purple Eldo, but never in such detail..!! xxoo

has he been to a hepatologist (liver specialist)? if he has stag 4 cirrhosis he should be taking lactalouse a drug that will clear the ammonia levels from the body. my husband had stag 4 in may of 2011 he was hospitalized numerous times. he has finally received a transplant on aug 2 2014 he is doing well. you must get your husband to see a hepatologist. Dr Mitchell Shiffman he is in VA. if you wish you may email or if you wish to talk email me your contact info.
If your husbands ammonia levels stay too high for to long he could have brain damage. I will pray for you both.
Dawn

Another word on the Caddy story; "big car" is a relative term! The Cadillacs and Lincolns from the 1990's look large to us today, but they were significantly smaller than the behemoths that preceded them...and I do recall that the Eldorado was somewhat smaller than the deVilles of that era. My dad had a 94 Eldo, presumably similar to Carol's 95, and by the standards of mid 90's American luxury brands it was not an especially big car - for example, it was nearly a foot shorter than that year's Sedan de Ville, and weighed several hundred pounds less. Carol, big or small, I wish you had your Caddy back!!

Oh Pugdaddy.........So do I! I would love to have the cute little thing back if only to park it in my spot in the garage. Since we moved this summer, I now have garage space. And, you are right..........My Cadillac was a 2 door instead of 4 and it appeared so much smaller and sportier than the other styles of Cadillac all the way through the '90's.........

Those cars of the long ago era were HUGE!!!!!!! We had a Lincoln and a T Bird and a Caddy DeVille that were so big even my husband had difficulty parallel parking them. I also had a Cadillac Seville with the little snub trunk and longer front end that was a desert rose color and everyone called it "Carol's pink Cadillac"........That was back when I owned the restaurant and could better afford more pricey things....Now,I am just "po' folk"...........Be well everyone!!!!!!!!!!Hugs and prayers.......CarolLentz

I just read a study that says that there is poor correlation between measured Ammonia levels and HE. It is unlikely then that this is the cause of the issues.

Is he taking Lactulose? I find if I skip a day or two stuff starts to get weird, and I am on Rifaxamin too.

HE is a bugger that is for sure.

Ammonia levels are one of the most difficult blood tests to run, terribly inaccurate, my doctor won't even use them.

Your blood has to be put in ice immediately, or the blood drawn starts changing. Even then there can be huge differences in the levels from one day to the next, it's very hard to get an accurate reading.

I've never had it, but they can do an Arterial Blood Gas, which is still a difficult test and much more expensive but supposedly more accurate.

The ammonia level and HE are becoming more and more questionable, but medical care is constantly evolving.

If you can handle Lactulose, it certainly can't hurt. Some of us just can't deal with it.

"If you can handle Lactulose, it certainly can't hurt. Some of us just can't deal with it"

I am one of those who uses it as a last resort. I can't handle sitting on the commode all day or having to plan my whole day around a bathroom.
I think my ammonia level rises and falls depending on what I eat the previous day or within the past few days. For example the other day I went overboard whacko nuts and had a meatball sub from Subway because I was really wanting one, and a day and a half later I've got a headache, weird "visions" when I lay down to sleep, and a nasty odd smell emanating from my body. I took a swig of lactulose last night just to help the stuff I ate pass through my system. So I think it does rise and fall depending on different things.

Thank you all for your feedback. Since my husband also has bipolar disease Im not sure if the behavior change is coming from a mania rather than ammonia. Again this week he is manifesting behavior changes. He is irritable, he looks drunk but I dont smell alcohol. He eats normally if I remind him to sit down and eat if not he just snacks all day. His memory is ok but when I attempt to have a normal conversation he cannot maintain fluent conversation. Its like he mixes things up or cannot draw a conclusion. My husband is normally very articulate and intelligent so I can tell the difference right away. His tone in speech also changes. It gets a bit raspy and slower than usual. Another thing is that he wants to sleep alot during the day but at night he wants to stay awake. I dont know! The bad part is that he refuses to go to the doctor so Im left guessing. He goes to the bathroom quite a bit and his urine is clear with no odor. His breath also fails to have a smell. Like I said, his last episode was last month and now again this week I started to see similar signs. Im not really sure how to help my husband in this situation. Any advice is greatly appreciated!!!