Re: Hello Again/Encephalopathy

[Guest guest]

A good article on it may be found here:

http://gastroresource.com/GITextbook/En/Chapter14/14-13.htm

[Guest guest]

Hi Ken;

Another good article on hepatic encephalopathy is:

Encephalopathy, Hepatic

http://www.emedicine.com/med/topic3185.htm

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

> I know I have suffered from this in the past, although some new symptoms

> in the past few months have made me question whether what I thought I

> knew about this is in fact what happens.

Ken,

Sorry to hear about your troubles with encephalopathy. What are your new

and old symptoms? I agree that the standard lists of signs and symptoms of

HE can be rather vague and confusing. What does it really mean, for

example, for your " personality " to change? If I am more tired than I once

was or in more frequent light pain or look different than I once did so

that I have less energy for social activities, keep up with fewer

interests, dress and eat differently (and in so doing spend my time with

different people doing different things), has my " personality changed " or

I am just tired? The symptom that confuses me the most is sleep reversal.

It is very difficult for me to fall asleep much before 4-5AM. Most days, I

have to get up around 8AM to go to school but on the days that I don't I

will sleep through the day until about 5PM. Is this HE or just a messed up

sleep pattern caused by sleep deprivation and compensatory sleep? Over the

past few months, I have tried various pharmaceutical and

non-pharmaceutical methods to try and obtain a normal sleep cycle but with

limited success. Most Rx sleeping pills leave me feeling drugged and not

rested the next day and even at tiny doses (say, 2.5 mg of Ambien - a

quarter of a tablet) will knock me out for 12+ hours at a time.

My doctors think, and I am inclined to agree with them, that the things I

have described above are the result of sleep deprivation and not HE. But

sometimes I still wonder/worry...

Kate (in WA) is the caregiver to someone with significant HE. They haven't

had much success with Lactulose or with dietary changes. Hopefully she

will be able to reply to your message with more specifics.

Best Wishes,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ Duke, MELD=16)

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[Guest guest]

Hi Ken,

Sorry for the delayed response. Its a combination of computer virus

and overload of " activity " that have kept me away lately.

RE: Hepatic Encephalopathy, from personal experience as a caregiver,

its the caregiver (or astute medical provider)who usually recognizes

symptoms before the individual does. The symptoms may be very subtle

to begin with, such as forgetfullness, loss of concentration, etc.

that can also easily be the result of stress, loss of sleep, etc. It

may progress to difficutly with driving (forgetting where you are or

where you are going...), memory loss, and coma in the worst cases of

untreated encephalopathy.From my understanding, encephalopathy is

usally just diagnosed bases on clinic findings rather that diagnostic

tests (tests not felt to be reliable). In Deb's case, it was the

doctor who told her to stop driving, not me (I always drove when we

were together and I didn't realize she was having trouble). She quit

work and has not driven now for about a year and a half and her

encephalopathy has gradually worsened over time...For her, the

treatments have been only partially effective. She has very poor

balance, diminshed coordination, pressured speech at times, poor

short term memory, and insomnia. She is banned from the stove now,

as she laid down and fell asleep while she had something on the

stove. She ending up burning her hand and we were glad that was the

extent of it!

She takes a " connect the numbers " test at every clinic appointment

and when she first started, was able to connect 1-20 something in

less than 15 sec or so and this last time, couldn't keep track of the

number sequence and the nurse finally told her to stop after 3

minutes! Its a sorry state to be in, but we foudn the humor in it.

Shauna, contrary to what your doctors told you, Deb's doctors have

all said that the insomnia is related to her encephalopathy and end-

stage liver disease. However, this is not to say that everyone with

insomnia would experience what Deb does or everyone with

encephalopathy would experience what Deb does. I think most people

are treated effectively with lactulose or similar product that binds

to the excessive ammonia in the body or diet changes(vegetarian).

If I could give one piece of advice, it would be:

to the person with end stage liver disease: listen to people who may

be telling you they are concerned for your safety and ask someone to

ride with you when you drive sometime if you live alone. Talk to your

doctor if you are concerned.

to the caregiver: don't be afraid to express your concerns to the

individual or to the medical provider. Be a rider in the car

sometime, to see if judgement is impaired. Safety is more important

than independence. I think there was a research article recently on

HE and drving response, maybe a few months ago?

Anyway, that's our encephalopathy story in a nutshell. If you haven't

already, Ken, talk to your family/friends and doctor...

Kate

caregiver for Deb. Meld 14, listed for TX in Washington since Feb 03