memory/confusion/concentration issues and dizziness etc is driving me mad at the moment.. my partner gets frustrated with me as when she is talking to me about something I've already forgotten what she's taking about 20 seconds in!
Reading is also increasingly difficult as I read words differently to what they actually are. More annoying than It sounds.
Anyway my appointment is in Professor P Newsomes hepatology clinic at QE next Thursday, my question is would they prescribe rifaxamin off my symptoms alone? I really hope they can prescribe me on the day this is debilitating. Weird mood swings and being mean at times without wanting to be. I feel like I've also become really lazy.. not like me at all.
Thanks for reading!
Written by
ktan49
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It's completely normal how your feeling I now can't remember 3 years of having h.e. but I know I was a dopey bugger and had no interest in anything, don't feel guilty it's just part of the journey unfortunately ...
Regarding your partner, has she had a look into h.e.?
My friends and family used to come look after me a few times a week to give my husband a break from me ..
Your consultant if he thinks you're symptoms are bad enough should prescribe you rifaximin but you have to remember it's not a miracle drug, I was still in and out very often with h.e even when I was on it ... Keep drinking the lactose that keeps you moving and also removes the toxins x
The best thing you can do is arrive at your appointment with as much information as you can gather. Make sure you bring your partner with you as she can give an independent description of your behaviour compared to how you are normally.
The British Liver Trust worked with a drug company to produce a very helpful aid to help you live better with the specific neurological effects of liver disease. Not everyone will have hepatic encephalopathy (H E) as a symptom but understanding the condition and its effects is a good place to start. The publication as well as being a guide, enables you to keep a record of the day to day difficulties that you experience and helps your medical team in deciding on the best way to treat your condition.
I was seriously affected by H E and spent quite a few days (80) in hospital during just one year. Eventually with the use of lactulose and Rifaxamin this was reduced to no admissions and becoming well enough to deal with the assessment process and eventually a transplant. This isn't to suggest that you will be the same as me or need the same treatment, that will be for your doctors to decide.
I hope all goes well with your appointment and in the meantime try to keep active, eat well and don't worry too much.
I feel for you and your partner HE in my opinion is one of the worst symptoms of liver disease. My husband had numerous bouts prior to transplant. He says he has no recollection or very vague recollections of these times. I unfortunately remember it all and it is heartbreaking to see. At the time I supported him, kept him safe etc. As Jojo says in her post Rifaximin may not cure it all but it’s definitely worth taking as it may? or at least reduce severity? We became obsessed with lactulose and bowel movements, keeping on top of this to remove the toxins will really help. Jim’s post is also great and hopefully this will help you and your partner cope at this stressful time. Take care and good luck at your appointment.
Thank you everyone for replies. On the plus side the days and time is going so quick! The last 6 months have been life changing for the worst. Can't even remember my 30th bday in November
Hi Karl,
As Jim has kindly already shared we do have a useful publication on HE and an 'HE passport'. Maybe yourself and your partner can have a read of these prior to your appointment.
It is very important to tell the prof how severe your symptoms are and how they affect your life, all this information will help his assessment.
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