Cirrhosis Support Group

I posted a little over a week ago regarding feeling slightly fuzzy, and have been reading that one of the early symptoms of HE is "day-night inversion" where people tend to sleep during the day and stay awake at night. That's been happening to me going on a couple of weeks now. I'm literally awake through the night until after sunrise, sleep/or exhausted during the day. I'm very concerned about this as I've read HE can spiral out of control rather quickly. As far as I can tell I don't have "liver flap" but I do feel foggy when I am awake. Very, very worried.

Hello Winson, My husband has never had liver flap and he's had 3 known HE episodes. He says he can't remember if his head got fuzzy. He noticed his 2nd one because he couldn't read his watch - he said it looked up-side-down. Make sure you take your lactulose (you do take it right?). Watch your BM's. Try Mike's thing - do the 5 pointed star.

My husbands sleep pattern all along has been out of wack and for us doesn't show a sign of HE unless I can't get him to wake up and respond coherintly. He sleeps only a few hours at night and then is awake then he falls asleep bout 11am and sleeps most the day until I force him up about 3 or 4 and most times that doesn't work.

Talk to us during the day if you are worrying about and HE episode, usually Mike, Dennis or Gail can tell by what you are saying or typing if you are having an HE episode. Have someone with you.

I pray you are okay. If you get too concerned go to the ER have them do an amonia level test. I know what you mean being worried and I don't have it my husband does.

I'm sorry I'm not much help but know I'm around and I'm sure there are others here or will be.

Bless You........

The sleep inversion is more a pattern of cirrhosis than of HE.

Jim's sleep pattern has been off for years. He did not have HE until March. I first knew something was wrong when in the hospital, he was seeing things and behaving erratically. Going to the bathroom and using the corner of the room was a good indicator something was off. Later, could not get him to wake up. Remember, worry and stress can wreck your sleep. It's very easy to think any off thought of movement is HE. Jim's in the middle of his 2nd episode. It's a huge difference!

Hi Winston,

Have to agree with MommaMac on this one. Being so anxious I keep thinking every muscle twitch is HE. When I was off balance for weeks and the doc told me anxiety I thought NOPE must be HE. I had pains in the centre of my chest a few weeks ago and thought I was gonna have a bleed. Then I thought about it, I had been swimming a lot and using chest muscles for breast stroke! Only get sleep probs if itching is bad although I do get tired in the afternoons. Try and either walk a few miles each day or swim. Gives you more energy during the day and helps you relax at night. Mind you Winston, this is all very easy for me to say as I take anti depressants at night which does help me dose off. One other thing I find excellent is read a book with a dim light on. Works wonders!!

Thank you all for your thoughts and answers. What is the five-pointed star? Drawing a star? I know motor control can be affected by HE, so maybe that's a test for it?

Hi Winston - Mike came up with the idea - it's where you put a pencil to a piece of paper and draw a 5-pointed star without lifting the pencil. He also has another incredible idea on how to track HE. Write your signature - daiy I think - and when the HE is really bad you can see the difference. Hang in there! Ru

I agree with Mike. The day/night inversion is not really related to HE but to cirrhosis in general. Liver flap, if it occurs, is obvious you would definetly know you had it as it is an uncontrollable movement.

HE when mild is cause for caution. If it is going to spiral out of control "very, very quickly"....one would have to be "very, very sick". I say this as I remember the battle Mike had prior to transplant. When his HE was very bad he was an extremely sick man. If most things are normal, HE is likely not going to to spiral badly unless someone is (as MommaMac's hubby) really very very ill.

Also, as I've heard here and now recently from my hepa, your ammonia level is a test for only ONE toxin in the scheme of things. There are others, but no test has been devised for them, so a patient can have HE on the basis of one of the other toxins unidentified, even if the ammonia level is not that high. As my hepa explained it, it's one of the flaws of medicine.

And, not everything is related to Cirrhosis. As we normally age, our sleep patterns can go out of wack. We can also forget things and anxiety over possibility of having this disease can cause sleep disturbances and mental disturbances. I've had one bad episode of HE and it was apparent to everyone. When I get 'too' forgetful I watch myself closer. I take my meds and then go on to live the best life I can live. PBC is not going to take over my life!