Cirrhosis makes me sleep all day & night -- any remedies?

[RosaRugosa]

Hi! I'm new here. I have had NASH for many years and it has now turned into cirrhosis. I have numerous varices, and had a near-fatal episode of bleeding from my varices a few years ago. The varices have responded well to banding, but I am now astonishingly tired. Sleeping 18 to 22 hours a day is not unusual for me, and I can't seem to sleep at regular times. All the sudden, I am exhausted and then I'm out like a light. I really can't do anything because I am almost always asleep.

Any advice for me? I take a number of drugs for my cirrhosis, including diabetic drugs such as metformin, Victoza, and Actos. I take a little bit of nadalol (20mg/day) to keep my varices small. I recently had a series of iron infusions. I take statins to protect my heart, valsartan to protect my kidneys, and lasix to reduce edema. I also take milk thistle.

I'm really desperate to find something that will help keep me awake. I feel as if my whole life has been stolen by sleep.

Thanks for any suggestions! -- Judy

[AyrshireK]

Sleep distruption and sleeping for lengthy periods can be symptoms of hepatic encephalopathy which is another side effect of cirrhosis. Amongst your list of medication you don't mention any which would tackle toxin build up which causes HE. It would be normal to be taking lactulose to ensure you are using the toilet frequently and evacuating toxins in your frequent stools. The normal treatment of HE involves Lactulose in combination with Rifaximin and it would perhaps be worth asking your GP to test for ammonia and toxin build up and to see about treatment for this and perhaps seeking treatment for possible HE.

Katie

[RosaRugosa in reply to AyrshireK]

Thank you very much, Katie. I hadn't really thought this might be hepatic encephalopathy because I seem pretty alert at times. Also, my MELD score is still quite good. However, you are correct, I should look into HE.

I have now sent my hepatologist a message asking about this. I am familiar with Lactulose (I was on it after my variceal bleed), but am not familiar with Rifaximin. I will look up Rifaximin and report back here if I have questions about it. Thanks!

-- Judy

[AyrshireK in reply to RosaRugosa]

I know you are posting on the Liver4Life page here and that they have their own information on HE I find the British Liver Trust information a bit more detailed and it can be found at:- britishlivertrust.org.uk/li...

Definitely worth checking out what your toxin levels are and whether this could be HE symptoms. My husband has been on lactulose since initial diagnosis with cirrhosis in April 2012 as a preventative measure and since he attended the liver transplant unit in 2014 and they found he had modertate HE symptoms he has been on both lactulose and rifaximin.

All the best, Katie

[pip-lit]

I too have iron infusions (monthly), because my constantly tired due to my very low iron. My liver consultant had thought that I had internal bleeding, so I've had cameras up and down a couple of times. Nothing found. About six weeks ago I saw a blood consultant, who thought that I might have myeloma and ordered a bone marrow biopsy. Get the results next week. It might be worthwhile asking....

[GrandmaDylan in reply to pip-lit]

You're describing me to a T! I was diagnosed with anaemia last February and was told that it was probably myeloma...fortunately it wasn't. I would fall asleep anytime, anywhere. We went on a cruise and I slept on the hop on hop off buses all the way round Barcelona, Lisbon and Monaco 😴 I had a gastroscopy and colonoscopy and even a camera endoscopy where you swollow a large pill with a camera in it. I've since had a further 2 gastroscopies, ( another one next Monday) 2 CT scans, MRI scan, liver biopsy, dozens of blood tests and a partridge in a pear tree 😂😂 I hope you get things sorted out soon. Deb

[Abby14]

I would not take staitns as they are liver toxic, you need to have a chat with your DR about coming off them! I was told that by a dr & would not touch them! I to have had NASH for years & have delpoved chrroiss lucky for me it is in early stages & i have no varices I have the same sleep problems as you & once slept & enrine weekend! I am worn out all the time! It drives me mad! Ask about lactouse to help you go to the loo & it helps remove toxins! also keep hydrated, this will help remove toxins & keep you regular. Exercise can help, although its the last thing you feel like doing! it can help make you feel more awake! so sorry you are so poorly I hope I have been some help

[gwillistexas in reply to Abby14]

Abby14...actually, research has proven different with statins. Anti inflammatory, antifibrotic & anti cancer.

[Abby14 in reply to gwillistexas]

Ok Thanks I did not know that! Just going on what my dr told me. Very intersted to know more.

[gwillistexas in reply to Abby14]

I understand. That info comes from a liver specialist who speaks at the PBC conferences. You’re welcome 😊

[Abby14 in reply to gwillistexas]

Thanks What is PBC?

[gwillistexas in reply to Abby14]

Abby14...Primary Biliary Cholangitis

[RosaRugosa]

Hello! I just got a notice saying someone had replied here. I didn't realize there were so many replies. Thank you to everyone who posted!

My intense exhaustion doesn't seem to be hepatic encephalopathy -- I am glad that I don't have both HE *and* life-threatening varices. Also, I have a good blood specialist. I will not even ask about myleoma, because it would insult him. I asked my heptologist about HE, and he never responded -- not because he doesn't know about liver disease, but because he is a renowned liver specialist. If I had HE, of course he'd be treating me for it already.

Sleeping for an entire weekend would not be a problem. It's more like I sleep for a month, with just a few hours awake here and there. I'm way behind on my bills, not because I don't have the money (fortunately, my husband currently has full-time work.) It's that I can't stay awake long enough to pay them.

I'm now convinced the problem is my immune system attacking my liver. Immune problems can cause overwhelming exhaustion, and this sometimes happens with liver problems. My immune system clearly is attacking my liver -- although, not to the extent that happens in cirrhosis that is purely auto-immune, instead of due to NASH.

I was seen by a very prominent immunologist when I first learned of my liver problems, and he said there was no treatment for the immune problems. Everything available was either a blood thinner, and too risky, or was a corticosteroid, which can cause Type 2 diabetes and fatty liver even in people who previously had no metabolic problems. So, the available treatments just made things worse. But, that was four years ago. I will go back to the immune clinic, and ask again. Maybe there is something new that would help.

I am also interested in trying supplements. Supplements usually don't get tested for effectiveness (or for safety, for that matter), because the drug companies cannot make money off of them. However, I have heard reports -- more like rumors -- about various supplements that might help with NASH.

So, does anyone know anything about the following supplements? SAM-E, Co-Enzynze Q10 (aka Ubiquinol), and Lecithin? Also, I am interested in knowing of any other supplements thought to help with liver problems. (I am already on Milk Thistle.)

Thanks!

Judy Sarayda (aka RosaRugosa)