Since my first episode of HE a few weeks ago, I was prescribed Lactulose and Rifaximin (as you would expect). Unfortunately I was still getting cramps and spent the nights jerking and awake, so my doctor prescribed 200mg of quinine for the cramps. Surprisingly I have slept well every night since.
Quinine isn't without risks though. I was wondering if anyone else had tried this with any success?
Mike.
We tried tonic water 😆😆 and it worked to some degree - they wouldn't prescribe hubby quinine xxx how are you feeling now ??? HE is horrendous 😢😢 hubby suffered terribly xxxx remember to try and keep as 'regular' as possible - rifaxamin helped loads xxx lots of love and best wishes 😘❤️❤️
Hi, poor hubby, 'HE' is a horrible part of the disease. My best wishes to him. A caring partner and good friends are so important at this difficult time.
Personally I try to stay clear of fizzy drinks owing to the sodium content so I havent tried tonic water. I am pretty regular with the meds. I've been taking the quinine once each night and it seems to give me a good night's sleep (the odd night I've tried without it has left me awake with cramps and jerking).
I can't understand why the doctor wouldn't prescribe quinine to you, both my gp and liver guy were happy for me to use it, did your gp give you a reason?
Good luck to you both.
Mike. X
Have you had much discussion on HE? Peter the moderator asked me to stop canvassing for HE sufferers to talk together. I have followed his demands. I suffered greatly and feel this subject should not be taboo, sure some mad stories might come out, but for those suffering (alone) some might be quite scared...... I was lucky that I found my antics funny, I coped well with a lot of family understanding and support, had that not been so, I can imagine huge suffering could ensue,I have no idea why Peter wanted to close subject down, some silly idea that mental issues should not be discussed? embarrasing? I dont know, there was a survey in uk, Germany and USA by a rifaximin type manufacturer, 50 subjects found in USA and Germany, I was the only one they found prepared to be surveyed in UK! strange! I still have slight HE 8 months after transplant, but NOTHING like pre transplant.
Hi Mike,
I was never offered Quinnine, I would jerk my legs and suffered huge cramps for months (before transplant) now 8 months post transplant all is going well in that department. I am picking up on your mention of H.E. that I really suffered from dramatically, earlier I posted asking if people wanted to share some HE experiences, Peter the moderator asked me to stop, but I still feel some people must / might suffer from HE and struggle with it IF the effects are as strong as I experienced. If you want to talk on HE subject let me know, I am most willing to describe my experiences, which could either be amusing or helpful for other "sufferers" to share. In a way I "enjoyed" the experience, but I am aware of some who are quite cowed by the experience. Good luck with HE, Cramps, Lactulose and rifaximin, and the quinnine. My warnings from my experience : balance gets worse, lack of inhibition (HE) caused me to take risks, had many falls, one serious, if it takes you this route, be warned! how I never broke a bone is unbelievable, especially as my calcium was almost non existant..... other HE stories are crazy, I was li8ke a different person much of the time. best of fortune, Charlie.
Hi charlie, I daresay the moderator believed he had good reason, although I can't imagine what that may be. Personally, I feel that 'HE' should indeed be discussed in the blog, a lot of us are fairly new to this and it can be a lonely and confusing world to be thrust unwittingly into. There isn't a whole lot of support for us and what there is is difficult to find for many. This blog and the subjects covered is so needed.
All the best.
Mike
People need to know more about HE !!!!! My husband suffered so bad and is now (13 months post transplant) having investigations into ??? Permanent damage 😓😓 he still gets muddled and is really forgetful 😁😁 - He often went for walks ??? Even leaving hospital in 'spongebob squarepants' pyjamas to walk along a dual carriageway (he wanted a steak) and ended up being returned by police covered in mud 😫😫 he also got 'pava' sprayed and hand cuffed whilst refusing to go back to the ward - this went on for 18 months and he was totally oblivious !!!! bless him 😩 I had the wonderful 'wifely' duties of giving him enemas when he became more confused 😝😝 and also 'physical' fights when he wanted to leave house at 2am to find something ??? We ended up with 'alarms' on the doors and a 'police escort' every time he had to go to hospital !!! Hepatic Encephalopathy is most defiantly the worst part of cirrhosis !!!! People should be more aware so they can do everything in there power to avoid it !!!!!! Protein - was another one !!! Had to eat low protein to avoid HE but have enough to keep strong enough for transplant xxxxx
Robs 'twitchy' legs (not cramp) would come and go and they just said it was 'restless legs syndrome' - he still has it from time to time but it's not a big issue - he still sleeps a lot - do you ??? Rob has HCV also xxx please don't be put off sharing your experiences xxxx you should be allowed to discuss anything relating to your 'liver disease' ❤️❤️❤️😘
You have both had an awful time of it, I am amazed at how strong you have been throughout Robs problems, you have my admiration. Where would we be without people like yourself. I am lucky as my wife is also so supportive.
Strange that they now tell us that a high protein diet is required.
Regarding the amount of sleep, with the quinine, I manage about 8 hours sleep at night with a couple of toilet visits. I also sometimes have an hours nap in the afternoon if I'm feeling rough otherwise. If I don't have the quinine, my night sleep is an cramped and fidgety 2 hours with spending the most of the day in bed trying to catch up.
Best wishes to you both. Mike XX
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