Cirrhosis Support Group

Hi there. We were told last Monday that my husband, who has NASH, has HE.The confusion has been happening on and off for the last 9 months and in some respects we are both glad that we know what it is. I have been unable to find any real info other than the medical stuff and was so pleased to find this support group this morning. Reading the posts has really helped and I no longer feel alone. I see a lot you of live in the US. I am from Scotland.

Welcome AnnieCat from Scotland! You found the right place. Most if not all of us have been through HE. It's a scary time because, in my case, a loved one's personality change is scary and so wrong. He felt so bad afterwards, wondering what he did. Our doctor told us that they don't know what causes HE just that Amonia is a MARKER! So we call lactulose Magic Juice. Is your husband put on Lactulose?

I'm sure you will hear from others who can help better then me but we're here if you want to vent/talk.

Post edited by: booky1961, at: 05/21/2012 09:14 AM

HI AnnieCat

HE can certainly be frightening. I assume his Dr started him on Lactulose , or something similar (not sure what is carried in Scotland)He should also avoid animal proteins especially red meat (which is harder to digest) Some chicken is usually OK as well as fish. Plant proteins are easiest to digest.

Watch out for other causes of HE such as Infections , GI bleeds , dehydration , and some meds.Also low sodium can also cause the same symptoms.

Please check out our site

http://mysickliver.weebly.com/

Hi..yes my hubby has been put on lactulose. At the moment we are still trying to find the correct dose for him. Yesterday he spent most of the day sleeping and appeared to have very vivid dreams not realising for a good few minutes after waking that the were simply dreams. He also was very jumpy (hands, legs) while sleeping. I realise that the sleep is part and parcel of HE and wondered if others have these vivid dreams and jerky movements while sleeping. Last night when I was getting into bed he woke up and asked me what I was doing getting into bed with him when he was in hospital - he had dreamt that he had been readmitted. It's just so good being able to talk to people who understand.

Welcome! I've had the dreams and shaky limbs too. Now that I have the HE under control, those have diminished. So glad you found us!

Oh yes, the things we do and hear and see and say!

We've a couple of members both in the UK and Ireland.

Welcome Annie. My husband has non-alcholic cirrhosis (i presume that is NASH). He has had about 6 bouts of HE, landed in the hospital (since Dec. 2010) three of them I had to call 911. He is taking lactulose and Xifaxin. He also takes Propanol for esophageal varices. Taking a lot of meds & vitamin & iron (not too much iron as you can have too much) He has beef twice a week, other days chicken & fish. Trying to keep salt intake down to 2,000 mg. I counted yesterday what he had had & added up to 1562 mg. not counting the 1/2 banana and apple. My husband is also a diabetic on top of this.He has had very vivid dreams, has been cold, slipped on stairs (when I was not here) and shower (looking into a chair for shower) I was also told by support group might be good idea to get a urinal. My husband does sleep a lot during day, trying to get him walking. He is also bending over and slouching a lot. No acites, no itching. Knock on wood!

I have been to Scotland - Inverness, Edinburgh and others. I have a friend I Jazzercise with - has a flat in Hatfield. Great country and great people!

This is a great site to be on and just vent. I have been learning something almost every day.

Hi annie, welcome to the group. i found it very difficult to access any information on HE ( in ireland) and the medical stuff was way too complex to follow. theres very little information available to the patient or family here and our GP wasnt too well up on the condition, in fairness he became an expert on the subject and helped in any way he could.

the nightmares and jerking during sleep seems to be a very common problem but when you get the balance on the meds does make a big difference. the members here have so much knowledge its amazing so dont be afraid to ask questions.

Hugs Colleen

Hi Annie,

I am in Canada but (used to be) a regular visitor to Scotland. I have daul citizenship as my Mom is from Sterling. I still have relatives in Sterling, Dunfermline, Edinburgh and Lochgelly. I was set to study in Glasgow but a change of plans at that time...anyway! Been a few years since I was back but love it there

I hope you get things under control for your hubby and get the HE settled down. This site is great and we have our own website full of info that MPMOM mentioned to you, and a newsletter, so you are in the right place. Always someone around and always lots to read. Go back in the threads, search by what you want some info on like "HE" or a derivative of that and many older threads will also pop up for you to read.

Welcome!

Hi again....hubby is also an isulin dependant diabetic and has been for nearly 30 years and, of course, this comes with its own problems. He has stage 3 kidney failure because of this. He is on Propanolol, amongs other things as he had intestinal bleeding some years ago.

Today has been a bad day. He has spent most of it sleeping and is rambling when he wakens ups.He is convinced that his dreams are real and keeps repeating the same questions. He had breakfast but wouldn't eat anything until about an hour ago. Thankfully, our GP is coming in tomorrow so we'll see what she says. I suffer from depression and today is one of those days....hair won't sit right, feel fat etc etc. Oh well, tomorrow is another day!