Hi, my partner has PBC and has been added to the transplant list this week which is positive. He is still working and generally in good health (liver issues aside) On Sunday morning I woke up to him being sick (not totally unusual) but he wasn’t fully conscious. Long story short he ended up in A and E where he made a rapid recovery and came home Monday. We went to see his consultant yesterday for some feedback on the trip to A and E. He was told that it looks like a seizure and not HE which we’d though was the answer. Has anyone had an experience like this? We were advised that HE wouldn’t have caused such a rapid reaction and recovery. Bit confused. Sorry to sound so vague. He’s now been referred to Neurology, in the meantime he’s been told he can’t drive.
HE or a seizure? : Hi, my partner has... - British Liver Trust
HE or a seizure?
Hi Jammymags. It's good news that your partner has got a place on the transplant list. I'm not an expert on all symptoms of HE but I can tell you that when I had it I was never sick. I was very confused and apparently I was saying very strange things. I was so confused that I couldn't use a bowl and spoon (I tried to eat the bowl). Also I didn't know which room was which in the house. I thought that the hallway was the bathroom. It was total confusion really, a detachment from reality. It was more frightening for my family than me as I was oblivious to the fact that there was anything wrong with me. I'm sure you will get some other members of the forum soon who will tell you of their experiences with HE as I'm sure there will be forum members that have suffered from different symptoms to mine. Wishing you all the best. Alf
Thank you. It was very scary but fortunately he isn’t able to remember any of it. its good to have someone’s experiences to compare, makes it all a little less overwhelming. Samantha
Hi Samantha. Yes, it really can be scary. In my case I was oblivious to everything it was my wife that was having to deal with it having never experienced anything like it before. I have absolutely no memory of it. My wife told me all about it a few days later. I have heard some people on the forum refer to it as being like brain fog. I think that this is maybe when they are aware that there is something wrong but they are still trying to function normally. Hope they are able to sort out for certain what it was soon. Alf.
Alf, Jammy. I hated going to the doctors and hospital, would do anything to avoid it but you know you get those times when you just think, you know what, there right. Perhaps the easiest one to explain was one Sunday, my sister came to visit my wife and I. Anyways I was chatting quite the thing, nothing wrong, then went to get a glass of water. Must have been away about 10 mins. Noy you can see into my kitchen from the living room. Anyway the mrs shouts on me, I blank her so she starts to get up to come through to see what I was doing.
So I’m standing there, glass in hand looking at the tap. Motioning my hand towards it. That taps broken, it won’t give me any water!!!! Points at incessantly. What do you mean?? It’s broke it won’t work look. You need to twist the tap, look.
I’m standing there as if she’s just parted the Red Sea!!!
What is this wizardry???
Are you serious? Come on stop playing about.
How, how did you make it do that??
Another 10 mins of come on your going to hospital. No I’m not, I knew it, my mum was right, I’ve married a witch 🧙♀️!!!!
Another half an hour of this and in sitting down. Didn’t say anything for ages. You know you might be right, I think I should go to hospital.
That was me for the next 3 weeks it’s funny now but at the time it must have been the scariest thing they had seen. No strike that, that was when I thought I was trending #1 on twitter world wide. But that’s another story. It’s funny to look back at it but not at the time. Hope this has raised a wee smile for you just now.
Cheers will
Hi will. wife told me that I couldn't work out how to use anything or even open doors. Luckily I was good humoured with it all even if I was difficult to control. I thought that I was invincible. Looking back, we have a laugh at the things that I got up to but as you say very upsetting and scary for the ones looking after us at the time. All the best. Alf
Alf, that’s not even that half of some of the stuff that I’ve done and I’m sure we’ve all got some belters. I thought I had been kidnapped and was in the sick bay on Star Trek, ah bless they royal nursing staff. Unless they have a video of me chatting to jean luc Picard. To be fair the nurse did have a different colour tunic and well bald. Easy mistake to make in that condition. We should all share these and get them in a book.
HI
Alf has put it very well, my experiences were the same.
No sickness as well
David
Thank you David, the sickness does seem to be the head scratcher. Thanks for the reply
Again firstly, congratulations on getting on the (drumroll) ‘list. I was held back at first for 3 months before going on to it so I remember every feeling about it, more importantly to my family. But as far as HE goes, I had this on and off for 2 years and I sort of had both issues you’ve mentioned here.
There were a few times when initially I was violently sick first and remember everything thing about it, apart from why I was being sick in the first place. Then others I was told I had been being sick for days while I was in hospital and don’t remember a thing about being sick in the hospital. So I guess it can happen both ways.
Them main thing is that if they are worried about you having seizures they can give you something to try and stop you having them. I only had 1 that I could really be described as a seizure when I was under when my varices burst but I was totally under at the time so don’t remember it. So I’ve been taking anti seizures meds since. Better safe than sorry and don’t interfere with anything else so I just keep on taking them.
Guess what I’m trying to say is that although it can be scary and concerning for everyone there are things that can be done to elevate the worry and stress that this can cause. It’s the same with a lot of things with this illness, it’s really scary but after the first time things happen there’s normally something that can be done done so it doesn’t happen again.
Nice to see my ‘trying not to go off topic’ working ..........
Thank you, hearing others experiences is so reassuring. Horrid you’ve all had to go through it of course! He’s been referred to neurology and said they’d put him on AED’s his consultant is amazing and he couldn’t be in better hands. I think the driving thing is hitting him harder than any diognosis wish there was more I could do
Trust me, just you being there will more than make up for the driving. The other part is that once it gets sorted out and is taking medication if he needs it he’ll be back behind the wheel. It can seem a long process and as if nothing is happening but sometimes that’s a good sign. Your in the right place and he’ll get all the help he will need, if any is needed. In a wee while he’ll be sick and tired going back and forth but it will be worth it.
I think that at least one person on here will have gone through the same as you and your partner will be going through and everyone is happy to help. So no matter how small you might think it is, or I’ll sound daft asking that, don’t, ask, trust me, we’re not a bad bunch. Good luck and if there is anything you need or want to get off your chest. Everyone is here and been through it all at some stage. Let us all know how you to are going.
Cheers William
Hi
I'm really pleased he's managed to get on the list. I have had stages of confusion but not full he, sorry I can't be much help but just wanted you to know I'm thinking about you both. Love and hugs Lynne xxxx
Hi, also had a couple of incidents like your partner, i.e. waking in middle of night and just wandering obliviiously into the bathroom just sitting on toilet and unwrapping toilet roll all over the place, my partner tried to get me back into bed, but i wasn't having any of it, and he also described my eyes as like pin prick pupils, i just went to bedroom window and stared at nothing (no way was i going to settle)! The next evening, i was trying turn television off, but i couldn't do it (very frustrating), it felt like my brain knew what to do, but i just couldn't function properly, it was like i was in another world! Informed doctor for possible seizure and he sent me for tests for possible TIA's, but nothing found? I also have liver chirossis and diabetes type 2!
Yes, I remember trying to work the remote control for the TV and wondering how come it was broken? ( I normally had no problem with it, my wife jokingly calls it my hand extension). Only a few hours later I didn't even know what it was!
My partner thought i was going off my rocker and messing around, which made the situation worse for me. (don't get me wrong as he is very supportive too, but i think it scared him a little, as out of character for me! What is HE excately?
Hepatic encephalopathy. It's when ammonia and other toxins that are normally metabolized by the liver build up in your system because the liver is not working properly and the toxins affect the brain. There are medications that can be taken to make you go to the loo regularly to help flush the toxins out of the body.
Hepatic encalopathy (think that’s how it’s spelt) Described to me as chemical build up that effects the brain. He’s been told it isn’t this and he has no memory of the episode so I guess we’ll put it down to just one of those things
Would you know which medications there might be for this condition, so that i could perhaps mention to my GP or Consultant? If this breaks the rules of this site then best for you not to mention, if this puts you in jeopardy!
There are laxative meds and if the HE is prolonged I know there are laxative enemas and also antibiotics. All cases differ in severity and are treated as needs be.
Thank you for info, but i go to the toilet regaularly anyway, (so laxatives are probably out of the equation), but will look into other meds mentioned! How are you by the way?
Lactulose which is a laxative also has the property of removing toxins from the bowel so it is usually the first line treatment for HE symptoms. Often it is now used in conjunction with Rifaximin and this is the antibiotic which others have mentioned for the treatment of HE. Rifaximin is usually a hospital prescription at first with repeats done by GP's.
For more information about Hepatic Encephalopathy - signs, symptoms and risks etc. have a look at the British Liver Trust page about the condition. britishlivertrust.org.uk/li...
Katie
Thanks for that, will look into it! Hope you are ok!
These make you go to the toilet several times a day to get the toxins out of the body as quickly as possible! I'm 8 months post transplant and doing very well. Had 3 spinal fractures through falling after transplant because I had been ill for a long time with NASH and HCC and become very weak. Have absolutely no problems with my new liver just some pain after fractures. I'm stronger now though and managing to stay on my feet, LOL. Thanks for asking.
I had no memory of incidents either, and doctor couldn't diagnose it either! However at the time i was taking Amitryptaline on top of my Mirtazapine 45mg anti-depressants (as advised by my my consultant for pancreatatic pain), but no longer do this, and touch wood it has never reared it's ugly head since!
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