Hepatic encephalopathy : I always use... - British Liver Trust

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Hepatic encephalopathy

Smyally profile image
19 Replies

I always use this guide to help people understand the stages of HE. Especially helps when I’m having a moment myself. Thought I would pop it on here to see if it can be any use to others as well

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Smyally profile image
Smyally
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19 Replies
GrandmaDylan profile image
GrandmaDylan

I have noticed that I sometimes use the wrong words when I'm speaking. I also can't always think of the word I want when I'm emailing. Is this possibility stage 0?

in reply toGrandmaDylan

Hi

What a brilliant guide, I've noticed a I have started having a few strange behaviours. Thank you for posting. Hope you are ok.

How are you grandmaDylan? I have pm you. Love and hugs Lynne xxxx

Smyally profile image
Smyally in reply to

Thanks Lynne. Hope you are ok too. Just keep an eye on things. I do get a lot of HE moments now which makes me question everything I do and reread everything I write to make sure it’s appropriate. I get close friends and family to let me know as well xxx

in reply toSmyally

Thank you.

I've not been good at the moment, continuous pain as well as my other conditions. My consultant has referred me to a pain specialist at wythenshaw, he injects electrodes into you. My GP said make sure you ask about the success rate as well. My consultant doesn't want to see me until February!! I think I may be on to his secretary to get an earlier appointment. I think the waiting list at wythenshaw will be a long one!! Hope you are ok today. Love and hugs Lynne xxxx

Smyally profile image
Smyally in reply toGrandmaDylan

It could be GrandmaDylan I think it’s if you notice these symptoms happening more than what is the norm for you. Just keep an eye on it. Write down in a diary when it happens (if you remember to) and mention any concerns to your consultant. Take care x

davianne profile image
davianne

Thanks Smyally, that's very interesting. I have minor symptoms of HE occasionally, partly grade 0, and a bit of grade 1, but definitely not inappropriate behavior !!!!!🤣, but it might just be my senior years.

David

Skabenga profile image
Skabenga

Great reference, hit stage 5 a few times in the 2013, before I had my transplant. Very disorienting waking up in a different place from where you originally were!

Smyally profile image
Smyally in reply toSkabenga

Yeh I’ve hit the later stages a couple of times too. Woken up in hospital without having clue how I got there or what happened in the previous two days xx

taar profile image
taar

Thanks, this is very helpful to me.

Hi Smyally,

Thank you for this. It is helpful.

Best wishes,

Mary

Smyally profile image
Smyally in reply to

Thank you. Glad to be of help. Take care xx

kyia profile image
kyia

Thanks for sharing - it's really easy to follow. In the early days post-diagnosis of cirrhosis, my partner had a couple of really bad temper tantrums and I've always wondered if they were caused by slight HE. His liver has been compensated for about a year, and there have never been any more similar episodes.

hillbilly59 profile image
hillbilly59

IM glad i found this chart i got lost in walmart. that was very scary

Hi

I know what you mean. I've nodded off sometimes and then can't remember anything from before I'd nodded off!! I wake very confused. My son said I wave my arms about when I'm asleep as though I'm having a fit. Love and hugs to you all. Lynne xxxx

Red50 profile image
Red50

Hi Smyally, thank you for sharing this information 🌷suffering from HE is awful even early stages and very difficult to understand and especially explain to your family and friends, warm hugs and wishes coming your way 🌷👍

Popel profile image
Popel

Wow reading that guide has made me realise how bad I was.although diagnosed with mild HE so the doctors told me.id still forget what I was talking about mid sentence or forget were I was if I went through work to a customers house and how to get home but the most worrying was forgetting to turn things off at home like the cooker or the fire.

Jammymags profile image
Jammymags

Thank you for this. I’m always looking out for HE with my partner, I think he displays grade 2 more often than I realised. Never want to panic him but it’s good to have a better understanding.

janeytrace profile image
janeytrace

i feel i could put myself at grade 3, but this hasnt been mentioned by the dr. Although i am undergoing neuropsychology testing and my MoCA test score was 20/30 i think and further testing required as hard to make a diagnosis due to many different things it could be. I may have to have a lumbar puncture if the retest whenever that will be (was told a long wait) comes back the same or worse. When labs are taken would the results show HE if present, how do I find out if I have it?

Smyally profile image
Smyally

Hi janeytrace

Are you being seen by a liver consultant? If you feel you have symptoms, especially at grade three I would contact your consultant and let him/ her know your fears Explain your symptoms, they can do a blood test that measures the ammonia levels in your blood and will be able to treat you further with medications . I will add that when I was at grade 3 I was laying in a hospital bed unable to do anything much for myself at all. I hope you feel better soon as it is not a very nice thing to suffer from. Take care x

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