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Signs You Have Hepatic Encephalopathy

When we are having trouble thinking clearly with hepatitis C, it might be time to look for signs you have hepatic encephalopathy, or HE. It’s very frightening because we can go in and out of it, depending on how much ammonia is in our blood stream, what we ate, or how well our meds are working. I had HE for many years and didn’t know it. Even after my diagnosis with hep C, my ammonia levels would be fine, and I could still be having an episode. Once you begin to notice the symptoms, it can be easier to detect, but many times we need help from medicine, our doctor, and a caregiver when we have HE.

Here are some signs that you may have hepatic encephalopathy:

Slugglish mind

At first, we appear to be taking a second to think about something. The truth is, thoughts slip away and we don’t even realize it. Forgetful – It’s easy to become scattered with our thoughts and we may have trouble remembering what we are doing or saying.

Disorganization

This may apply to our thoughts, and certainly describes most of my life. I carried planners, day books, and had sticky notes all over my house, car, and at work. I appeared organized, but I was a hot mess.

Personality changes

This one is sad, because my daughter said that I became argumentative over silly things. It’s usually not my style, but with HE, I would take a stand over things that really didn’t matter. She learned to overlook it.

Denial

It’s not like really in denial because we don’t remember saying or doing something.

Poor judgement

Silly things like putting the leftovers in the bathroom cabinet are fairly harmless. Trying to drive when we are too foggy to find our car keys is another.

Vulnerable

With hepatic encephalopathy, we can easily trust the wrong people. It’s important to surround ourselves with people who will tell is the truth in a loving and respectful way. They can warn us and protect us about from someone who may take advantage of us.

Shaky

We may have slight tremors when our brain gets too foggy.

Slow movement

This is one we have to be careful with. During an HE episode, we can become clumsy. Dizziness may even bring on an unstable gait.

Drunk-like feeling

I vaguely remember some events and conversations in my life. There were many times I was in a dreamlike, drunken state.

Anxiety

It’s hard to keep your marbles when they’re rolling around everywhere. That’s how I felt many times. I wanted to get it all together and have things in order, but thoughts, actions, speech, and emotions seemed to swirl around. It’s a scary time.

In the long run, the signs you have hepatic encephalopathy are a lot like the signs of other health conditions, or even simple signs of aging. HE can be diagnosed by your doctor with blood tests (labs). These tests are fairly reliable, but my doctor saw signs of HE even when my ammonia levels were low. He prescribed Lactulose and Xifaxin, which are 2 powerful drugs to help lesson the effects of HE. They can prevent you from going into a hepatic coma.

If you have hepatitis C, liver disease, or cirrhosis in addition to the above signs, please let your doctor know right away. You’re not alone in the struggle, so please reach out for help.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • BrendaAnderson
    2 months ago

    Thanks for this.

  • Lucilleharrell
    4 months ago

    He’s told Drs about stomic swell.nothing yet .thinking cause he was on meds for hep c..now may get help he’s done with meds..

  • Karen Hoyt moderator author
    3 months ago

    So sweet of you to be looking out for your husband while he’s on Hep C treatment. The doctor can tell by looking at his bloodwork if there is something going on. Also a physical exam might reveal why he is swelling.
    Talk to the doctor about swelling and liver disease, and also about bowel movements and diet.
    Please let us know what they are finding out. xo Karen

  • Lucilleharrell
    4 months ago

    My husband has been swollen stomic (above )it’s taken out but he just finished meds..2009 had hep c..stomic just started 6 no.ago..no help yet

  • William Osborne
    4 months ago

    I have nobody to talk to about my hep-c.was diagnosed 2008.not sure when I got it.havent done anything about it.now my stomach is swelled up,and I have scabbing and sores.on my arms.i am really scared.just wanted to get this off my chest.god bless.

  • Susan Simon moderator
    4 months ago

    William, have you seen a doctor about the skin issues and the swollen stomach? Knowledge is power. Please see a doctor and get these things attended to. Ignoring symptoms is not the thing to do. I know you are scared, but don’t let that paralyze you and keep you from getting help. Please talk to a doctor. (Sue, Community Moderator)

  • Lucilleharrell
    4 months ago

    He has told Drs about it .they gave meds didn’t help .but was treating meds hep c.praying for help now he’s done with meds hep c.

  • Carl
    4 months ago

    Can you have HE after being cured of hep c. ?

  • Susan Simon moderator
    4 months ago

    Carl, that is a question for your doctor. My best GUESS would be that you can if you had late stage disease when cured. But I am not a medical provider. This would be best answered by a physician who treated you. By the way, there are medications that can help HE. (Sue, Community Moderator)

  • highmaintenance
    4 months ago

    I have a cirrhosis-tic Liver and Have been diagnosed of having HE. My ammonia levels don’t always show off in my labs oftentimes I’ve noticed. I was taken Xifaxin & Lactulose to keep the toxins flushed out of my system. I filled for assistance for Xifaxin & after taking them for a little over a year I don’t qualify. The best price That I can get is $1,600 30 days. I haven’t taken them for near 4 months now. Sorry if’n I come across complaining, I’m extremely Grateful for all received.
    Grace & Joy to God’s own.

  • Karen Hoyt moderator author
    3 months ago

    Sue is right and the brain, diet, liver, blood sugar level can be a mess. For many months, my ammonia was fine, but I was sleeping in my car in parking lots when I should have been at home. That’s when they insisted I take Lactulose.
    Adding Xifaxin was truly helpful, but when I ran out, I didn’t get a refill one time. It seems like the price needs to come down and make it available to all. It’s sad when you are trying to make it financially and need to be a little more poor.
    I don’t hear you complaining. The reality is that Hep C was a terrible virus and damaged our liver and our lives.
    You’re one of many remarkable testimonies of how we overcome the odds and obstacles are become Hep C free!
    Hang in there, brain fog and all, you’ve got a great future. I hope you get help paying for more Xifaxin in the future.
    xo Karen

  • Susan Simon moderator
    7 months ago

    Thank you for this article, Karen. I assume that these changes come on fairly slowly and may not be noticed early on by the patient. I think it is worth noting that simple brain fog, common in many chronic illnesses, shares some of the same symptoms but is not nearly as serious as HE. So, if a patient feels foggy, a bit forgetful, don’t jump to the conclusion you have HE. But tell your doc what is happening.

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