Heptic encalapthy

[Tonisha123-mm]

I had a heptic encalapthy diagnosed in 2020 and although I'm on rifaxmin and have non alcoholic liver disease , with this condition I couldn't speak or walk or do anything for my self and touch wood I haven't had a bout of HE since then , although I do find however that if I'm so so tired or run down I get so confused and start talking to people or what I think are people and I suddenly realise they not people and I tend to fall a lot and I'm so terrified of HE happening again because the liver speaclist has told me that I'm not completely safe from HE and wanted me to speak to my family to tell them what to look out for and when to ring for a ambulance now that's scary because I feel like every day is a bonus to me each day I don't have a bad HE episode and when I get over tired I tend to talk gibberish or make loud noises in my sleep , what is other people's experiences like or does it happen so often or not so often , when I start talking rubbish or going off track if somones talking to me and I come out with something totally different and they like are you OK I then say I think I need a sleep and tend to find that if I've had my rest I come back to normal what call normal anyway because I know how fast HE can happen so fast because in 2020 one morning I was eating breakfast at 9 am and felt OK a but tired but nothing new and my midday I stood up and just went straight back down my whole mobilty had gone just like that and I started shouting swearing not making any sense and they rushed me in hospital and my daughter took videos because I can't remember at all about going in the hospital let alone a ambulance and I'm looking at them right threw them with my head uncontrollably nodding has I had no control and waking up from icu I still couldn't speak propley , I remember trying to ask a nurse for a pen to write because of my speech and she couldn't understand me at all which was very frustrating thinking is this going to be me now not being able to talk propley with no mobilty the hospital but a dols in place for 12 months but never lifted it until I left hospital to go to rehabilitation, what's other people's experiences please into HE after they have been really bad before being put on rifaxmin x

[Colourist]

I know this isn’t a lot of help but, it’s called Hepatic encephalopathy but, I knew what you were on about. I’ve had something similar as I have Autoimmune Hepatitis. Only I was diagnosed with psychosis. I had some of the symptoms you had. I think they were not totally sure which I was suffering from as I was given a lot of Lactulose everyday ( which is a treatment for Hepatic encephalopathy) although I was terribly constipated as well. I try to make sure that I don’t ever get that constipated as I feel this could be a cause. However I was also on a very high dose of Prednisolone which can cause steroid psychosis. Im on a much lower dose presently but, still get brain fog. Hepatic means relating to the liver and encephalopathy is a disease ( dictionary definition) in which the functioning of the brain is affected by some agent or condition( such as viral infection or toxins in the blood) I also had sepsis twice during this time and that is caused by toxins in the blood. Which could have been due to a number of things, chronic constipation, a virus, the fact that the nurses had cleaned me incorrectly underneath, susceptibility to a virus or bacteria due to being on steroids and also an immunosuppressants. I try to be as careful as I can given the little knowledge that I have. I think what I’m trying to say is they don’t know exactly what’s causing it for each patient as we are all individuals. My Consultant currently wants me off the 5mg of Prednisolone- weaning off slowly as although it saved my life it does other deleterious things to the body. My problem is I also have severe asthma and it’s possible the 5mgs is helping me ( a bit! ) with this. This at least is to be investigated soon. I sincerely hope you never have Hepatic encephalopathy again. Best wishes xxx

[AyrshireK]

The British Liver Trust has an excellent page covering HE including a Covid Passport that can help with monitoring of symptoms. britishlivertrust.org.uk/in...

My hubby has a diagnosis of mild Hepatic Encephalopathy with symptoms being concentration difficulties, understanding stuff and making himself understood, fatigue, sleep disturbance and issues with keeping focussed on tasks.

He is on both Rifaximin (since 2014) & Lactulose (since 2012).

Katie