hepatic Encephalopathy

[Kingbilly3]

morning, can anyone advice me about hepatic Encephalopathy ? I have stage 4 liver desease and was feeling so confused last night with things like time and thinking lights were off but were on is this the start of it? Last time I was like this was last march when I had my diagnoses, I take lactose which is bad enough cos am never off toilet so is this the normal process and how worse does it get?

[AyrshireK]

Are you also on Rifaximin? Might be worth asking at your next appointment. As regards your current situation if you are feeling muddled up then it would be best to get checked out for HE though having an infection can also lead to varying levels of confusion.

Are you well hydrated? Especially in light of recent warmer weather and if you are toiletting frequently you could be dehydrated which can very quickly trigger a spell of HE. Some blood tests would reveal if you have other issues. (When my hubby had his acute spell in December he was dehydrated having been sleeping lots and also had high calcium levels & very high blood sugar).

Katie

[Kingbilly3 in reply to AyrshireK]

Just lactose I drink lots of fluids as well, do episodes come and go or are they always there?

[AyrshireK in reply to Kingbilly3]

I can only speak from our experience.

It can vary, my hubby has had years of what they call 'covert HE' which is like a background level of confusion, sleep disruption, inability to concentrate etc. T

owards the back end of last year it became more 'overt' very, very obvious - slow movement. co-ordination problems, stumbling and falling, very confused as to where he was etc. etc.

He was hospitalized with an acute episode where he spent several days barely awake. When awake he didn't know our address, his own age, date of birth etc. That rectified to his base level whilst in hospital but he now remains very affected with great confusion, inability to dress himself, clothes going on in wrong order etc. Unable to follow instructions, very frail and muddled and unable to eat (just chewing food and not swallowing) and more.

It can be episodic, come and go, some days he's slightly better than others.

If in doubt get checked out because it can get bad quite quickly.

The BLT has useful information about Hepatic Encephalopathy at:- britishlivertrust.org.uk/in...

Katie

[Kingbilly3 in reply to AyrshireK]

Thanks for advice, is it possible just to get it for like just a day then goes away then returns? Sorry to here about your husband

[AyrshireK in reply to Kingbilly3]

I guess if you've not shifted enough toxins you could be foggy for short spells.

My hubby is awaiting transplant due to his HE.

Katie

[Liverlife in reply to AyrshireK]

My husband takes Rifaximin and lactulose. He was able to cut back on Lactulose after starting Rifaximin. This is to control the Ammonia levels, which when built up goes to the brain and is the cause of confusion , balance/sleeping issues. Water is a huge part of his life now. He drinks 6 8oz. Glasses per day. This has enabled him to control build up for 4 years now. Good Luck! 🙂

[Kingbilly3 in reply to Liverlife]

Av been on lactose for year now and feel like all I do is sit on toilet for no reason cos most time there is no bowel movement will rifaximan make the same happen just I feel I can’t go out the house!

[AyrshireK in reply to Kingbilly3]

Rifaximin is an antibiotic and it's usual to use it in combination with lactulose. Lactulose dosages can be tweaked yourself - enough to go to the loo up to 4 times a day but if you are going more often then you can usually adjust your own dose.

My hubby is on 15-20 ml twice daily, adding another dose if he's not been sufficiently.

If you are on more than that and spending too much time on the loo or dashing maybe you should ask if it is ok to regulate your own dose.

Katie

[Kingbilly3 in reply to AyrshireK]

I have have tried different doses and it only makes me feel like I need to go all the time but nothing happens, I do tend to have 3 but spend so much time on loo for nothing

[AyrshireK in reply to Liverlife]

My hubby has been on lactulose since 2012 and Rifaximin since 2014. Always has had the 'covert' HE from the start. Late last year went down hill with it and has now got very overt HE. Definitely worse when not hydrating properly.

They added a new medication too late last year (LO-LA - L'ornithine l'aspartate) supposedly for some it's a miracle cure, sadly, seems to have had no positive effect on hubby so we are now awaiting transplant.

Katie

[Kingbilly3]

I had it really bad last march when in hospital it lasted around 5 weeks, I am ok today just last night I went so confused only lasted about a hour then went 🤷‍♀️ a will keep eye on it Thankyou

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Kingbilly3,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a group on Hepatic Encephalopathy.

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Liverlife in reply to BritishLiverTrust3]

Is there any support groups in Canada that anyone knows of?

[AyrshireK in reply to Liverlife]

There appears to be the Canadian Liver Foundation who seem to be similar to the BLT. Details at:- liver.ca/

Katie

[Liverlife in reply to AyrshireK]

Thank You😊

[Ewife]

HE can definiately come and go in spells. As others have said, Rifaximin makes a difference alongside Lactolose.We used to notice constipation, not drinking enough fluids and "overtiredness" all could make it worse.

All the best

Ewife

[Millie09 in reply to Ewife]

Hi Ewife .How are you ? More so how's hubby getting on ? ..Hope he's not as delirious as he was .

Linda x

[Ewife in reply to Millie09]

Thanks....yes, ive been meaning to do an update but hardly had a minute spare! He was discharged Sunday afternoon to continue his recovery at home. The delirium was the worst ordeal of the whole thing...ill do a post sometime today after his clinic appointment. Its going to take all my strength and time to get him out the door- see you later

[Millie09 in reply to Ewife]

Bless you, totally understand how very hectic all this is for you Ewife but I'm happy to hear he's home to continue his recovery .. don't forget you have lots of support on here if you ever need it Stay strong

Big hugs 🫂

Linda x

[KingsKidEveryDay]

Hello,

I am on rifaximin and lactulose as well. I had a bad episode of HE after having a procedure. I ended up at ER with crazy ammonia levels.

Since then I have tried numerous things to stay regular and not stay in the bathroom. Drinking plenty of fluids and miralax 2 times a day has definitely helped me.

Life can go back to almost normal you have to learn to read your body. I know to be more aware if I do not go at least once a day.

Good luck!

[Charmy1233567]

yes that is the start. Lactulose is do awful and painful, I was luckily able to get Rifaximin 550mg (Xifaxan) prescribed. It’s expensive but my doctor really fought for me to get this. It’s so crazy I was in so much pain for over a year before a new primary doctor mentioned this. Not even my specialist. See if you can get it, my dr petioles my insurance and I was able to get it. This med improved my quality of life by 100 %. No more pain constantly, i have had a couple episodes of encephalopathy but not like it was when I was on lactulose. It kills the ammonia in your gut rather than flushing it out through diuretics. As long as you have 2 bowel movements a day you won’t have to take lactulose. I hope this helps. I had a car accident and was bleeding all over my house without realizing the seriousness when I had one of the episodes of encephalopathy so I hope you have someone with you. My case was extreme I know, but be safe. Eat a good diet, keep your extremities elevated, and see if you can get that med. I also know of some herbal remedies but doctors don’t recommend homeopathic remedies so that’s up to you. I’ve really tried to explore all options. I will send that info if you like.

[EmmaThom in reply to Charmy1233567]

Don't take milk thistle or any herbal remedies, the only thing my consultant would be willing to endorse is coffee. Rifaxamin and eat your own weight in fruit veg nuts seeds beans eggs yogurt and 3 litres of water. But push for Rifaxamin, it is expensive but that's not our issue, blame big pharma for that

[Kingbilly3 in reply to Charmy1233567]

Thankyou, I live alone and luckily other day I was on the phone to my friend who said he never had a clue what I was talking about and neither did I, he came straight up and waited 2 hours then the confusion past, I bearly new who I was it was strange and scary

[Meanies]

I was told while on rifaxaimin not to drive even though I had no episodes from 2022 they said they would report me

[Kingbilly3 in reply to Meanies]

Oh well that’s not good as I drive

[AyrshireK in reply to Kingbilly3]

It's not the Rifaximin that means someone shouldn't drive but the H.E. itself. Hate to say it but having had a bout of H.E. that had you in hospital and you are currently on treatment for it in the form of lactulose you also should have been advised that it is a condition that you should notify DVLA about and it does affect your driving licence.

Just by you saying you have these wee spells that come and go shows how it can be potentially lethal to get behind the wheel.

HE is wrongly lumped under the alcohol related conditions list of notifiable conditions. (Wrongly because HE can obviously also affect prople with non alcohol related liver diseases).

Your doctor should have told you to notify DVLA or maybe they have but you've mot realised.

Alcohol-related disorders

Group 1

car and motorcycle Group 2

bus and lorry

Examples

■ hepatic cirrhosis with chronic encephalopathy

■ cognitive impairment

✘- Must not drive and must notify DVLA.

Licence will be refused or revoked until:

■ recovery is satisfactory

■ any other relevant medical standards for fitness to drive are satisfied (for example,

Source - gov.uk/guidance/drug-or-alc...

Katie

[Kingbilly3 in reply to AyrshireK]

My liver specialist says I have no signs of he 🤷‍♀️

[AyrshireK in reply to Kingbilly3]

I thought you said you had it for 5 weeks in hospital last year and are on treatment for it. Now I am confused.

[Kingbilly3 in reply to AyrshireK]

Just 5 weeks of total confusion and memory loss but can’t remember at the time any talk of he, and I have mentioned confusion since then but on my letters always it says no he that’s why am wondering if I have it or if it’s just confusion for some reason which is getting more frequent

[Kingbilly3 in reply to Kingbilly3]

Yes am still told to take lactose

[Lilu1 in reply to Kingbilly3]

hi, I have found that doctors have been hesitant to state HE on my dads medical notes aswell, even when test results showed that his toxins were through the roof. I think sometimes HE can be physically hard to diagnose, I have heard that blood tests are unreliable and the ‘flap test’ only shows when HE is severe or at a level 3 but It definitely sounds like you have HE and sounds like they are prescribing you the treatment for it. Not sure if it’s already been mentioned but LO-LA can sometimes work well for HE symptoms.

[EmmaThom]

I've been hospitalised twice with acute HE in the past year. The liver trust hosts regular HE forums on zoom ...they have been invaluable to me. We are all our wonderful unique people...one thing doesn't fit all. I was taking laxido, lactulose and senna. But with good hydration and a healthy diet I don't need them at all. However I am on 550mg rifaximin twice a day, I have missed a few and boy don't I see the difference when I do. But I'm not a clinician so please don't quote me. Kingbilly I hope you can join us on the next HE forum...there is hope my friend I promise you are 100% not alone.And listen to Katie aka Ayrshire...we are all indebted to her. When I was first diagnosed with terminal liver failure her guidance and kindness has given me the strength to stay positive,

Things are not as helpless as you probably feel at moment

Hope you can join us on the next HE forum x

[Kingbilly3 in reply to EmmaThom]

What is this he forum how do I find it? Thanks

[EmmaThom in reply to Kingbilly3]

If you call the office number for the liver trust they can add you to the invitation list I can't ask you to put your personal details/email address on here so just call LFT main number. Its been a lifeline to me, and reassures you that you are not bonkers