British Liver Trust

What do you feel like when you have a HE episode?

Mine is like,

Yes, I know the wall is supposed to be the place where you do wee wee. Doesn’t everyone?

I make a cup of tea then go on 10 diffent tangents like sweep, mop, dust etc then wonder why my tea is cold.

I know what year it is! Don’t you?

Then when I recover from my bout of HE, I get told what I did. I sort of remember doing the stuff but it feels like I am seeing me as the 3rd person.

It’s a bit like a strange bout of dimentia??

What have others experienced?

Cheers,

Brett

13 Replies
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Hello Brett.

I was/am impossible to live with, how my poor wife put up with me, I'll never know. Mind you, if the truth be known she was normally the cause of a lot of my anxiety and stressful situations. I've tried to explain it in words that people might understand by using this scenario.

There you are totally relaxed one evening watching TV. The adverts come on and you decided to go to the toilet. In order to get to the bathroom I have to walk through the kitchen. As I reach the bathroom door, the wife calls out, "Make us a cup of tea babe?" Normally this would never be a problem, but with HE the stress begins to mount. You now have another thing you have to do. So you think to yourself, I'll go and put the kettle on and that can be boiling while I'm having a pee. So, you walk back in the kitchen. Fill the kettle up and switch it on. You then grab two cups and put the tea bags in. To cut a long story short. You've made the tea and sit back down, the TV program restarts and there's a nagging feeling that there's something you've forgotten to do. You find your no longer watching the telly, but racking your brains instead. Finally it comes back to you. You forgot to go to the toilet. Your now angry with yourself for being so forgetful and even more annoyed that your now having to miss the TV program in order to return to the bathroom. What then tips you over the edge is when you reach the bathroom door, the wife calls out, "A biscuit would have been nice". What follows is an unprintable verbal response.

Ok, so I've tried here to make light on the subject, but in reality its horrible. The anxiety and stress causes blood pressure to rise and you can feel your heart racing. Sometimes it feels like your heads going to explode. I had my liver transplant 15-months ago now, but for me the damage caused by ammonia on my brain is permanent. Most HE if discovered early enough can prevent this damage from occurring.

I am having to accept the fact that this is now the new me. I can get away with it most of the time, as I'm just about to turn 65-years and everyone knows me as that grumpy old stupid git.

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Thanks for that Richard. I sort of know that I’m having an episode and I know my actions are not correct at the time but I can’t stop it happening so I go along for the ride. It’s hard to explain in words though.

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The other problem I have is one of guilt. Everything seems to be my fault. I think this is because of the forgetfulness of the condition. I seem to forget to do things, and then I blame and punish myself for forgetting. People just don't understand and think your being a pain in the bum. It's always your fault.

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Every time I had an episode I could not understand what everyone was on about.

There was absolutely nothing wrong with me and I wished people would just leave me alone. As for going to hospital and wasting NHS resources for nothing, I wasn't going anywhere, perfectly ok at home.

But of course that was just my view, I had no insight at all. Even at the hospital discovering that I couldn't tell the time, and being informed that the queens name is not Margaret, that didn't matter at all.

A few days later, I would understand that I was actually in a hospital and had been there for days.

Eventually I agreed to believe it if I was told that I was having an episode and go voluntarily to hospital. I always went from A & E to a ward within a short time as they knew who I was and for a while it was almost routine.

On the right medication and with better management the admissions and episode became less often and not so severe. However, the well known symptom of the inverted sleep pattern did persist until I had my transplant 14 months after diagnosis.

Jim

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That’s exactly the same with me. I’m not insane, it’s all the others lol. My episodes have stopped now ( touch wood) now that I’m on the poo juice and Rixafin

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Same here - one episode occurred because I convinced myself (delusion) that the Rifaxamin tablets were not really necessary and as they are huge anyway, I was hiding them.

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Rifaximin even

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Hi brett, ive done things like putting fabric softener in the fridge and also sound drunk on the phone mainly evenings. My long term memory is great but short term is poor. I'm sure a tabĺet called rifaximin is for HE but perhaps someone could clarify this,

Best wishes, julie

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Rifaximin is used for HE but only if you use lactose also. Rifaximin is also used for holiday sickness?? Rifaximin Cost about aud $750 for a months supply. I just pay AUD $6.50 as I am on a disabled pension.

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I get it in all forms. I don’t go to hospital with it, not even the first time when I presented with dementia type symptoms and no memory at all. My partner did not know what to do, it was a weekend so.he watched over me, made sure I got my meds etc. I was terrified when I came back, having no idea where I was, when I was, etc. after that the doctors explained and it was decided he could take care of me unless something bad happened. Now, I have gone to the hospital and been there for other things and THEN had attacks. Movements out of the home can often cause stress and put me into an episode. Our first holiday ti Glastonbury I missed 21/2 days having HE. That was costly.

I often feel guilt and shame and weep a lot. But my family is very supportive. My partner is the best. Thankfully his job is high up enough in banking that he can miss it, or take meetings at home via phone or Skype.

I often get sick afterwards and vomit.

Once I tore out my pic line in two places.

I take 2 antibiotics now for over a year.

I made the huge mistake of of letting them put a shunt in me after my first new liver started breaking down. Thus I developed HE. Prior to my first tx I had bad ascites, getting drained every ten days. I never got HE then, so it was assumed the stent would not cause issues. They were so wrong.

I take lactalose, but also enemas at home. Not that it’s a contest, but I’ve now had it it nearly everyday since last summer. Prior to that it was bad, but I had no clue how bad it could get.

I’m on the waiting list, but the new liver has to be really good because it’s a second one.

My life is no longer my own. I am so powerless, always terrified of the next episode.

I sleep a lot, have low blood so no energy,

I can’t go out without my partner as we can never tell when it’s coming.

I get it it in all forms, with varying symptoms.

Thanks to the original poster and those of you who are responding.

Just yesterday in another post I was responding too I was asking for help and support.

I find myself so depressed and self pitying. I also feel like it’s all I ever talk about since it encompasses my life.

Oh, just like the cold weather effects our liver disease, it can make my HE worse also.

Thanks for reading.

Love to all of us suffering with HE.

And it’s true. Unless you’ve experienced it you really can’t know what it does. I almost wished it was happening around the clock..that way I’d never even know the difference, and what it was stealing from me.

Oxoxox forgive mistakes,

Kimberly

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Sending you strength and healthy vibes from NZ. You are courageous, but in being so, look after your own spirit. Everyone on this forum appreciates your contribution Kimberly, hugs from Down Under, Sooze

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I take Rixafin and lactulose ( or Poo juice as I affectionately call it!) to help my HE

Hit and miss when I get it at home, I’m probably not fully aware of the extent as I’m in a comfortable known enivironment and feel safer. I started to notice it more when I left the house especially to go to the supermarket , I was very conscious that I was standing many a time like a rabbit in the headlights , and even with a list it was of little help. My partner refers to it as my bubble mode and became increasingly worried about me leaving the house on my own, suffering from anxiety before I was diagnosed makes it worse. We get around it by online shopping when he’s away for work or he will come with me. It’s heartbreaking that I was very independent before and I now I feel silly. I

t’s not nice to hear that other people are going through the same experience but comforting that I’m not alone. I think Richards analogy of making the tea hits the nail on the head perfectly

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We all seem to have quite similar experiences. That is comforting to know though.

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