Encephalopathy (HE), a visit to an ancient brain

[nash2]

Hepatic Encephalopathy (HE) -- A stranger lives inside me.

I've talked with many who have experienced the condition but this was my first time. It was very different from what I imagined. This blog is particularly aimed at care givers and family members who find themselves interacting with someone that they don't recognize.

It is not an uncommon course with this disease in its advanced stages for the patient to become angry, short tempered, and even mean. We see reports from people who no longer recognize their loved one. The warm, gentle, loving person they have known has somehow become a vengeful tyrant. This makes the job of caring for the needs of that patient very difficult. I can't help much to lighten the burden but perhaps a bit of understanding can make it easier to accept.

When I was delivered to the ER due to critical calcium levels I was at risk for a heart attack and/or kidney damage. It was a clear emergency and I'm fortunate to have suffered no long term damage to either organ. I credit my wife for acting when I was not capable of much rational thought.

As I've had time to reflect on the experience I realize that I also had my first experience with encephalopathy. I've talked with cirrhosis patients who suffer with it and have a new appreciation for the complexity of the event and thought I'd share a few thoughts which might be useful to folks at risk and their care givers.

The thing that surprised me most was that it wasn't a blank place. A personality lived there which I guess was me but it was foreign to me. I easily became that person and I had control of my body but the emotional world I lived in was quite different from my normal life.

I don't think I ever reached the full expression of HE as I spent several days in a strange in between place where I was aware of both sides of that event. I'm sure that there were times when I became the "other" person and was cut off from my normal self but I believe those were brief.

The "other" person that I saw was watchful, aggressive, and easily angered. Quite capable of lashing out and uncaring about the feelings or safety of others. Quite unlike who I fancy myself to be. I was shocked by the high level of stress that seemed to drive my "other".

I believe there is a good explanation for what happens to us with HE. The modern human brain has a large cerebrum where we know that most of the processes that make us what we think of as civilized reside. We never think about the brain that developed over millions of years and allowed our species to survive before the modern brain evolved. I've seen that called the reptilian brain and it is more primitive but governs much of what happens out of sight of our conscious awareness. The beings who lived long before us survived by being constantly on guard. Aggression usually won a disagreement. Kill, flee or be killed was a common situation. I believe that that evolutionary heritage lives in varying degrees below the civilizing processes of our modern anatomy. Our modern brain can be overcome by changes in chemistry and the older, more ingrained responses can express themselves. That suppression of our normal mental state is what we call HE.

We see the altered personality in advanced liver disease but I think it is part of society in broader contexts as well. The very dramatic examples are probably cases where someone suddenly murders people that they seemed to love. Psychotic breaks are likely examples of a sudden dominance of these far older responses. Those are the headline producers but we see many angry, mean patients that require care in the grip of illness as the common expression of this "other".

I realize that this discussion does not solve any problems, but perhaps understanding that it is a burden for the victim of HE as well might help. It does represent the loss, temporarily perhaps, of important aspects of our personality and puts us in the grip of emotions not subject to the calming influences of our normal processes. To the extent we remember we likely have regret for our actions.

A final thought. Not everyone has the same experience. Some people become far nicer with HE or become clingy or afraid. Others seem mostly normal but may forget to put clothes on when going out. There is wide variety in response but all are the result of the suppression or alteration of the normal brain functions due to chemistry changes. They deserve compassion not anger.

fattyliverfoundation.org/en...

[Livmar]

I recently experienced a very brief bout of HE. I never had it before. I was talking to my wife about my hepatologist and pronouncing her name. I started to get irritated when my wife kept asking who are you referring to. I was saying the name very close to what it was but not the true name.

I also recently experienced edema in my ankles never having experienced it before.

This liver disease is such a monster and attacks in so many different forms. I would beg those not with advanced liver disease to look after themselves, become as much educated as you can about liver disease and advocate for yourself . Do everything you can before you get to cirrhosis!

[Golendoodle]

My brother suffered with this condition for his last year of life and it was awful. He had to drink lactose which gave him diarrhea to help remove the toxins that would build up in his brain. It’s a horrible condition for the person that is experiencing it and for those who watch their love ones go through this. I pray Wayne this never happens again to you.

[nash2 Partner in reply to Golendoodle]

Thanks, I hope I don't have it again too, though it will probably be on my dance card at some point in the future. I'm working hard on my lifestyle in the form of diet and exercise to delay it as long as possible. My hepatologist thinks that my most important battle for now is the cancer which makes sense. Fortunately beyond the chemo drugs diet and exercise are also important for that disease. Realistically they are beneficial to most of the diseases that plague us so I'm good with that.

[Golendoodle in reply to nash2]

Wayne, I thought you had reversed a lot of the scarring from your liver and no more fat . My brother had end stage cirrhosis when he developed the build up of toxins . So does this occur with people that has scarring in their liver as well? I’m not seeing a lot about reversing the scarring or how long it actually takes but I keep trying . I know there is a medication coming out what looks to be March but as far as how much actual scarring it removes I don’t know.

[nash2 Partner in reply to Golendoodle]

Scar formation is a multi step process. The ability of the body to remove it depends on how much is old scar tissue. You can read about the process here, but when they tell you that scar tissue can't be reduced in reality it depends. We all have had scars on our hands that have disappeared over time. The question is always how long and that depends on an individuals chemistry.

fattyliverfoundation.org/re...

[Golendoodle in reply to nash2]

Thanks Wayne I now understand how fibrosis works . I’m wondering with the new medication that’s coming out soon will it be able to break down the fibrosis.

[nash2 Partner in reply to Golendoodle]

It isn't a simple process since it is a complex chemistry but that is probably the way it really works to reduce fibrosis. It makes it easier for the body's normal clearing processes to work again.

[Fibro2021]

This is very interesting information. Many cases of hepatic encephalopathy remain outside the attention of doctors, especially in the early stages of liver disease or non-cirrhotic conditions, and perhaps also with certain objective difficulties in diagnosing cirrhosis. The social consequences of hepatic encephalopathy certainly require the medical community to take the problem of early diagnosis of this condition seriously. Patients with chronic liver disease should be evaluated for hepatic encephalopathy as early as possible, since minimal hepatic encephalopathy can only be detected by a targeted search using special psychometric tests. Determining the level of ammonia in the blood also helps in diagnosing hepatic encephalopathy. Unfortunately, doctors often neglect to check ammonia levels even in patients with cirrhosis. Sometimes low levels of urea in the blood can be indirectly associated with increased levels of ammonia because a diseased liver reduces the synthesis of urea from ammonia.