I never had the symptom and your husband may not either.

But there is a thing called asterixis, more commonly known as hand flapping. You stick your arms straight out in front of you with your fingers pointing straight up at the ceiling (you really need to bend your wrists towards your body, almost perpendiular to the arm). With most people your hands are perfectly still.

For some people with high ammonia or HE, they can't keep their hands in that position, there will be a lot of movement, hence the flapping comparison.

Like I said, doesn't affect everyone, but a possible test.

Hi rummi...........Just had to say that my husband told me that my breath smells strange during the times when I have had HE episodes.
He mentioned it to my liver specialist during a routine visit and was told that it was the smell from the ammonia. High ammonia level is what causes the HE to begin with. Lactulose (which some find difficult to take) helps the ammonia to be metabolized and expelled before it goes through the system to the brain.

When I asked my husband what the smell was like he said, " a combination of something very sweet and alcohol breath." Of course, he knew I don't drink at all (neither does he anymore) so he knew it had to be something other than alcohol breath.

The hand flap test is probably a pretty good indicator as WilburTheCat pointed out, of someone experiencing high ammonia levels.

Hugs and prayers are with you and your husband.........CarolLentz

I cant speak from the outside looking in, but HE can be very hard for people around you to understand. the smell is just the tip of the problem. If you suspect HE go directly ti emergency. we don't even know its going on, only others around us can see it at times . what i thought was normal was lost to others. you can't belive the thoughts you have while in HE. and all may feel normal. continuse sleeping, loss of reality , time and down right anger can be the side effects of HE. seek advice from his liver doctor.

Terry is so correct about HE, the person experiencing it doesn't really know.

I live alone and at my worst a few years ago time slowed down, sped up, I'd call a friend and not hear back so call again, thinking it had been days when it may have only been a few hours.

I also did some other really silly things. The drain stopper from my bathroom sink disappeared, as did a knob from my oven and a pair of bifocal glasses. Not just misplaced, but gone. I'm guessing since they caused slight anger issues, during HE episodes I probably just tossed them and never recalled the situation.

I hope you can get things under control. Stopping drinking and taking the medications can make a huge difference, uncomfortable and hard to do, but often the liver can heal itself or at least not get any worse, just need to follow the rules.

This sounds corny and overused, but your husband has to make the decision to stop drinking (if he still is). No matter how other people treat him, lecture him, how sick he may get, he's the only one who can make the final decision to stop.

Probably one of the worst effects of HE, the person who has it often doesn't realize it. It's up to others to hopefully help out.

thanks everyone! Im still not sure what is going on with him but he refuses to go to the doctor. He has had a bad headache for 3 days now. I dont want to give him meds because Im scared of the effect. He says that his stool is normal and I did look at his urine yesterday and it looked fine as well. It doesnt appear to have a strong smell or anything. I dont know guys, I am soo confused on what to think. In the mornings he seems to be lucid but in the evening is when he appears drunk to me. He still insists he is not drinking and I cant find a bottle anywhere. I hate to not trust him but he has lied to me before about not drinking and then I find a bottle somewhere. I did the are test Wilbur and he passed that. Last night however he was super sexual and I just couldnt understand how someone that is sick can still be in the mood. I apologize if that's too much information. I just really am worried and confused. Thank you all for your help. BTW, I did go get him sinus medication this morning to see if it helps his headache. He does have mucous drainage too which leads me to believe that perhaps it is just a sinus infection. SOOO confused! I got him tylenol sinus. I know that Tylenol is not good for liver patients but I believe there is a recommended dosage for liver patients. Not sure what that limit is . If anyone knows please let me know. I figured acetaminophen was better than ibuprofen because of the bleeding potential of an NSAID. Please share any insight if you can! Thanks again!!

NSAIDS (ibuprofen, Aleve, etc) and aspirin are totally off limits for me because of bleeding issues.

I'm allowed up to 2 grams of Tylenol a day (most people can tolerate 4 grams). But that information should come from his doctor, not off an internet forum.

Hi Rummi,
I dug up some information for you concerning HE. I hope it helps you out. I imagine you know but cirrhotics persons using alcohol will cause the disease to accerlerate. I am sorry to hear of you husbands condition, Limit his proteins and talk to his doctor about about prescribing lactulose and/or Xifaxan. Take care,

Randy




Symptoms many begin slowly and gradually worsen, or they may begin suddenly and be severe from the start.

Symptoms may be mild at first. Family members or caregivers may notice that the patient has:
Breath with a musty or sweet odor
Change in sleep patterns
Changes in thinking
Confusion that is mild
Forgetfulness
Mental fogginess
Personality or mood changes
Poor concentration
Poor judgment
Worsening of handwriting or loss of other small hand movements

More severe symptoms may include:
Abnormal movements or shaking of hands or arms
Agitation, excitement, or seizures (occur rarely)
Disorientation
Drowsiness or confusion
Inappropriate behavior or severe personality changes
Slurred speech
Slowed or sluggish movement

Patients with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma.

Patients with hepatic encephalopathy are often not able to care for themselves because of these symptoms


Disorders that can mimic or mask symptoms of hepatic encephalopathy include:
Alcohol intoxication
Complicated alcohol withdrawal
Meningitis
Metabolic abnormalities such as low blood glucose
Sedative overdose
Subdural hematoma (bleeding under the skull)
Wernicke-Korsakoff syndrome

Hepatic encephalopathy may occur as an acute, potentially reversible disorder. Or it may occur as a chronic, progressive disorder that is associated with chronic liver disease


The severity of hepatic encephalopathy is graded with the West Haven Criteria; this is based on the level of impairment of autonomy, changes in consciousness, intellectual function, behavior.
Grade 1 - Trivial lack of awareness; euphoria or anxiety; shortened attention span; impaired performance of addition or subtraction
Grade 2 - Lethargy or apathy; minimal disorientation for time or place; subtle personality change; inappropriate behaviour
Grade 3 - Somnolence to semistupor, but responsive to verbal stimuli; confusion; gross disorientation
Grade 4 - Coma (unresponsive to verbal or noxious stimuli)

Thanks for the info Randy. Have never come across that before.

My math skills are fine, no euphoria, but I do take Xanax for anxiety.

Probably rate myself a 1, with hints of Grade 2 showing up occasionally.

Interesting you mention handwriting. Sometimes it's fine, but other days I can barely read what I put down. After several years, finally noticed it's related to diet and hydration, so the better I eat and drink (juice, sodas, water, etc.) I am much better off.

In my situtation it was reversble and by taking care of myself have done pretty well. But if I start skipping meals or not staying hydrated, little things start to go wrong. Luckily I can recognize them and correct things before it becomes a problem.

As a bit of an aside, skipping meals is terrible for you. I literally have no appetite and could go for days without eating. I finally put myself on a schedule and force myself to stick with it. It has helped a lot.

Hi Rummi-

I could be wrong on this one...but I have noticed a strange odor with some patients that I take care of with high ammonia levels. Usually the treatment that is prescribed is Lactulose and I always figured the smell was the ammonia coming out.

Also, with dialysis patients, I notice an odor there, too, which us caused by toxins coming up through the skin. Not everyone can smell it, but I can.

Bring it up with his doctor the next time you are able to go to an appt, As I said, it could just be me and my funky nose.

Good luck and make sure you take care of yourself, too

Tess

Thank you all for your feedback! Sorry to say but I found the culprit......a litter of vodka! I feel so stupid for believing him about not drinking. I looked for that bottle up and down and since I couldn't find it I thought perhaps it could be his ammonia levels that were giving out that odor and strange behavior. Well, last night I looked some more and found the bottle. I was so disappointed but oddly enough relieved as well that it wasn't HE. However, I do realize that eventually this drinking will catch up to him. He has been lucky to not suffer any of the symptoms of his liver disease in the last 8 years. He had a variceal bleed then that almost took his life. Since then he has been in good health. Although we did end up in the ER a few times thinking he had another bleed however it would turn up as alcohol intoxication instead. His last scope was done 3 years ago and the doctors said he had no varicies. That was great news, however I believe that gave him the green light to keep drinking. He always uses that as an excuse when I tell him that he needs to stop drinking. I know I signed up for this when I married him but I guess its not until now that Im living with him that I am really getting the bulk of it. Im scared and Im sad that the man I love will eventually die, perhaps much sooner than I would like. And the problem is there is nothing I can do about it. It really is hard to be a wife of an alcoholic / cirrhosis patient! I love him dearly and I will not abandon him knowing he is fighting this dual disease, alcoholism and cirrhosis. However, I prey that my faith in him and in my Lord will get me through the pain and hardship that these two awful diseases bring into our lives! God bless us all!!

Vodka is a tough one, probably the easiest to cover up the odor with mints, eating something spicy, etc. But there is always a giveaway, something that's not quite right.

Glad you found out. Hopefully he will admit to his problem and put a stop to it.

I've said this elsewhere, but the decision to stop is up to him. No matter what you or his doctors say, he's got to stop on his own.

Just because varices have healed is not a green light to go back to bad behaviors. They can come back and he could literally bleed to death from them.

Thanks Wilbur, I appreciate your comments. Vodka is easier to cover up than whiskey but I still can smell the difference between alcohol and no alcohol. Like I said I was just a bit confused this time because I wanted to believe that he really wasn't drinking. He had been doing really well as far as I knew. I guess he just got better at concealing the breath and monitoring his consumption. He says that he had that litter for over two weeks and had been sipping on it. I told him that he was crazy to believe that a liter of vodka in two weeks is ok! Who does that?? I know, an alcoholic! However, I do believe that he had only 1 liter because he didn't have any money to buy booze. You see, I monitor all the money for the sake of our financial security. He has a debit card but he knows that I check the account online so I will know if he withdraws money. His purchases I monitor and of course I'm always looking where he bought something and how much it cost. It sucks, I know, that I have to do this type of damage control. Plus he doesn't drive so he relies on me to move him around. Unfortunately he always has his drunk friends that come around and sneak him out of the house the moment I step out.

I know it sounds crazy what I do to protect this man from himself but it is what it is. I gain comfort in knowing that because I'm such a pain in the butt I make his drinking a lot harder than if i wasn't around.This man would most likely be dead if I didnt intercept all the booze! I hope to God that sobriety comes soon! I'm not sure who will outlast who! I know he's tired of me nagging him and keeping tabs on him and Im tired of searching for bottles! I guess we will see who gets tired first! It would be awesome for him to finally realize that drinking is just not worth it!! Just like you did!!

Rummi, this is not meant as insult, but sounds like you're a good influence for him, you may just "nag" him into behaving. Could actually work, enough guilt trips might put him on the right path.

Good luck

I, too, realize that HE seems to come on with me when I have let myself dehydrate or if I have gone without eating for a very long time. At first, I thought the symptoms were of a blood sugar drop but with the strange smelling breath as my husband describes and with the fact that I have no recollection of some of the time during past HE episodes have made me more careful to stay well hydrated and I won't go longer than 5 hours without eating (except at night, of course). I also drink plenty of water when I take my meds twice a day.

My doctor said that many cirrhosis patients cannot link anything with the onset of HE episodes. I guess that means that I am lucky in a way. When I start feeling strange and realize that I am just "not right", I have something small to eat and a glass of water. It doesn't stop the episode all the time but they seem to be not so severe. The longest an HE episode has lasted for me was just over an hour and I was totally exhausted when I finally started coming back to a more normal state. So much so, that I had to go to sleep for several hours. Then, when I woke up, I really didn't remember much about what had happened although my husband said I continued to talk but slurred my words and he said I seemed to have a difficult time focusing my eyes on anything........sort of like someone who is intoxicated.

He also said that I was horribly confused as I couldn't find the bathroom in our own home........He said he told me to go to the left and I went to the right and then yelled at him because I bumped right into a wall........He then realized that I was in trouble and he got me into a chair and practically sat on me so I wouldn't get up........He said I was talking but not making any sense for about an hour......Then I broke out in a drenching sweat and began coming around. I sweated so profusely that I had to take a shower right away and get out of the wet clothes and then, went to sleep.........Couldn't prove it by me because i can't remember a thing. I can just imagine that it was a comical site to watch.

Since I was put on lactulose, my HE seems more controled I think.
I take if faithfully. It doesn't seem to have too much of an unpleasant side effect with me.........again, I must be lucky. I do wonder sometimes if the amount of lactulose will have to be increased as time goes by. I find the taste of it grossly sweet and hate taking it but it beats the alternative. Hugs and prayers to you and your husband.........and, of course to all the experienced folks on this site.......They are "keepers".......CarolLentz

Carol, if you do have to increase your lactulose, be sure to increase you water intake also.

When I was first hospitalized I was on huge doses of lactulose (4-8 ounces, three times a day). I still remember one night the nurse came in with eight little nyquil sized dosage containers. Absolutely horrible to drink, but necessary. To bad they couldn't have put it in a larger container so I could just guzzle it down and get it over with, but no luck. Had to drink eight of those horrid little containers one at a time.

They would never prescribe that dosage at home, but since I was hospitalized, IV fluids being pumped in, they could monitor me and make sure things were okay