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Posted 4/18/2010 11:09 PM (GMT 0)

 Hello everyone I am new to this forum but have been reading and checking out the post and have found them very informative and interesting.  My husband has End stage liver disease but actually doing pretty well.  He has had varices and is on the Liver Transplant list with a Meld score of 8 and has Hep C as well.  He has had a difficult time with encephalopathy but it's being handled.  He is 52 and hasn't drank alcohol since he was in his early 20's thank goodness.  My question is that he has his nights and days mixed up and he cannot sleep at all without Ambien and even with it he doesn't go to sleep till early hours of the morning.  It seems know matter what we have tried as far as baths, music, more activities, nothing works.  The doctor(Hep) would like him to be without the sleeping pills but then he doesn't sleep at all for days.  His primary care doc says quality of life is important he needs his sleep or the encephalopathy is worse.  I was just wondering what others have experienced and any suggestion would greatly be appreciated.  I am confused because I have read that at end stage liver disease the patient is sleeping a lot and my husband seems to be only sleeping with sleep aide and then that's all he wants to do is sleep.

Thanks everyone...

DDMom

Posted 4/19/2010 12:51 AM (GMT 0)

Hi, DDMom, and welcome to the forum!  Liver disease is a very individual thing.  If you read the folder entitled Hepatitis Resources at the top fo the page, you will get a lot of info.  Mixing up days and nights is something that is found often with liver patients, including myself.  I tend to stay up until the wee hours.  Then I'm up and down every 2 hours for a total of 11-12 hours.  My primary care doc will not prescribe sleeping meds, but did suggest melatonin, a natural hormone that is OTC.  I found that 3 mg made me have bad dreams, but that 1 1/2 mg makes me sleepy without the bad dreams.  Being a man, your husband could try 3 mg to start--but NOT while taking the Ambien.  It would replace the Ambien. 

Your husband seems to be doing well, and with a MELD of 8 he is far from a liver transplant.  It is people that are truly near the end of their lives that tend to sleep a lot--meaning 18 or more hours out of 24.

Hugs,

Connie


Posted 4/19/2010 1:43 AM (GMT 0)
I took Ambien almost every night when I was doing the interferon/ribavirin cocktail. After a while, it stops working. So I ceased taking it. Now, I sleep less than I'd like, but naps help with that. **David**
Posted 4/19/2010 7:41 AM (GMT 0)
Hello and welcome to the forum. I was going to suggest the same thing as Connie maybe going to a good herbal medicine shop (one that has been recommended) or trying some reflexology or aromatherapy oils, they have many theraputic values and some ones are excellent for helping you do sleep, a local therapist might help. holistic therapies are very undermined they can be excellent.
Posted 4/19/2010 7:42 AM (GMT 0)
Sorry i meant to add that you should check with the doctor beforehand to ensure treatment would be suitable
Posted 4/19/2010 2:56 PM (GMT 0)
Thanks, Connie, Allie and David for responding to my post and giving us some other ideas of what to try next. David my husband started on the Ambien during treatment as well but he definitely needed something during treatment as he wasn't sleeping at all and spent a lot of time in the bath tub as he was freezing. He tried treatment 3 times and didn't respond. The last treatment was stopped early as his body wasn't handling it well. It just seems now like his sleep is a cycle thing. He will do ok and seem like he has the sleep meds balanced where he's at least up part of the day and then all the sudden he's up for 3 days and nights. I know he was taking the 5 mg and it stopped working so now he is taking 10 mg and it's working to where he is sleeping to much. It's just frustrating but overall he is doing good so we are thankful for that.

Thanks again,
DDMom
Posted 4/20/2010 6:25 PM (GMT 0)

My wife (who is also suffering from ESLD) takes 5 mg of Ambien at bedtime. Even with meds, she sometimes will stay awake until the wee hrs of the morning one night, and then sleep for 14 to 16 hrs the next. We met with a group of other patients and care-givers last month during her annual transplant testing, and the majority of them also reported roller-coaster like sleep patterns. One wife said that she had to move to a different bedroom due to the fact that her husband kept her up all night with his bouts of insomnia.

Charlie

Posted 4/20/2010 10:22 PM (GMT 0)
Thank you so much Charlie for answering my post. It's nice to have others out there that know what your going through. I wish we had a caregivers support group at the transplant center my husband is going to. They do have a support group for the transplant patient but we haven't been to it yet. I definitely know the struggle to get sleep when your spouse has a bad time with insomnia. I try to figure out ways to help him out with the sleeping problem but have ran out of ideas. I think I am at the point to just let him do what he needs to do. Sleep when you can and try not to worry about what ever normal is.

Thank you so much....

DDMom
Posted 6/29/2010 5:29 PM (GMT 0)
my cousin is on the list at Lahey Clinic and really likes the doctors there. I pray that she gets a liver soon. She has been in and out of the hospital four times since December. It is so hard to see her not herself. I am the sole caretaker and am experiencing terrible migraines from stress. Any ideas on stress relievers/
Posted 6/29/2010 5:48 PM (GMT 0)
DD,

My husband has his days and nights mixed up as well. He is typically staying up until the wee hours of the morning, then they sleeping until 2 or 3 oclock in the afternoon, etc. I will tell you that with him the Ambien really seems to contribute to the encephalopathy problems (mental confusion, etc). So, sleeping pills are a no no in our home. Also, something to be careful about is that Ambien can be habit forming. I have given him an over the counter sleep aid in the past which helps some, but it seems to be a losing battle. So, I am just letting him sleep. Luckily when he is up at night, he just goes into the living room and watches TV. With my husband, I have noticed that it also goes in cycles.....I am ready for him to cyle out of this cycle...LOL! Hang in there, you may just have to adjust where you can. Take care of you!

Mer
Posted 6/29/2010 7:00 PM (GMT 0)
DD my Doug had the same issues.....it seemed like a new baby not knowing the difference between night and day. He would cycle not sleeping with sleeping alot also. He didnt take sleep aids as DR said sometimes it increases the confusion issues so we just rolled with the punches! I agree about the caregivers support group, there wasnt one here either! I offered to chair one if they wanted to get it started even drive to boston once a month and also give out my phone number if needed.
Sue
Posted 6/29/2010 8:22 PM (GMT 0)

Hi, Mallshopper.  Good to see you posting, as we haven't heard from you since April.  Is your cousin's liver status deteriorating or is it stable?  We have more caregivers here than patients, so you can get a lot of support here from those who are experiencing the same types of things you are.  One thing I can tell you is that it is necessary for you to take time for yourself.  It is the only way to avoid "burnout."

Hugs,

Connie

Posted 6/30/2010 3:30 AM (GMT 0)
Mallshopper, I can understand how your feeling it is very frustrating at times but I think the best thing I ever did was come to this forum. It has helped me out so much to be able to get answers and understanding from people who have been in my shoes as well as my husbands. I think it also helps to take some time out like Connie said and take care of yourself.

My husbands doctors don't want him on the Ambien as well but he started taking it when he was on treatment and won't get off of it. It's really strange because it doesn't work when it suppose to and I have told my husband that I don't think it works at all but he wants to think it does. The cycling is hard because you get a schedule down and think things are going good and then all the sudden surprise the cycle has changed again. We have gone to 3 different transplant centers and the doctors all have asked, does the ambien actually works for you and they tell us usually it doesn't work. His encephalopathy will act up when he doesn't get enough sleep and then is will act up with the ambien. It's a tough call. I have read my husband your post hoping he will get the fact that the ambien isn't working and it isn't helping the encephalopathy as well. He has been doing a lot better, I'm making sure he is taking the Kristalose and the Xifaxan on time and it has helped a lot.

The transplant center that my husband is going to just started a caregivers support group this month which is great but it's being held at a really bad time for us. But at least I know where it is if I need it but to be honest I like this support group as I don't have to leave my home and if my husband isn't feeling good I'm here for him and the forum is too!!
I truly appreciate all of your support and your posts,
DDMom
Posted 6/30/2010 3:58 AM (GMT 0)

I did a little research on Ambien and found that it is supposed to be for short-term use (7-10 days.)  Also, if a person has taken it every night for those many nights, there may be symptoms of withdrawal when stopping it, as it is a hypnotic central nervous system depressant.  It should not be stopped abruptly, but gradually stepped down.  People with liver disease do not metabolize it as quickly as healthy individuals (but that is true of anything liver patients take.)

Hugs,

Connie

Posted 6/30/2010 6:48 AM (GMT 0)
Mike had psychotic reaction to Ambien... had to quit taking immediately... just come info.. Sandi
Posted 6/30/2010 3:29 PM (GMT 0)
Thank you Connie for the information. He has been on ambien for years as he has always had a problem with insomnia especially since being on treatment then as time has gone by he just stayed on it. His hep doc knows he is dependant on it but I guess thinks thats the least of his worries. His hep doc does give him a lecture every visit on how he should get off of them and my husband has tried and then he doesn't sleep for days. I have suggested rehab and of course I get this look of why I'm not over dosing. I just can't sleep without it and then he doesn't sleep anyway. Oh you are right about the meds not going through his system like everyone else. Predisone sent him over the edge and other medications make him blow up like a marshmellow man. He is taking less ambien now but he should be off of it!! This is a frustrating subject for me as I know what he should be doing but I also know he doesn't sleep at all and then when he tries to do more activities to tire himself out it makes it where he doesn't sleep at all and it makes it worse. We've tried all kinds of different things and it just doesn't work. I even told him at our age early 50's that it's normal to have problems sleeping through the night that it's just an aging thing. I know I don't sleep very well but I'm not taking anything for it, sooner or later I'll pass out. This is a subject we will be working on because before there wasn't an encephalopathy issue and now there is. Thanks everyone,
DDMom
Posted 6/30/2010 5:48 PM (GMT 0)

DD, since it's probably not really working anyway, maybe you could speak to his doctor privately about decreasing the milligrams.  That way, your hubby would be taking less, but not really realizing it.  And, as I said, it needs to be decreased gradually anyway.  Did he ever try melatonin?

Prednisone sent me over the edge, too, but that was 35 yrs. ago before I'd been diagnosed with hep C, and I only took 2 capsules.  I had a psychotic reaction.  One of the many, many possible side effects of this nasty med.

Hugs,

Connie

Posted 7/1/2010 3:15 AM (GMT 0)

DD, when Doug would go through the not sleeping nothing seemed to work either, he joined netflix and would watch movies on his laptop.....I would increase his lactulose to try to keep the encephalopathy at bay..... again the juggling act! Just learned to do things day by day and never make plans for things to specific. Oh we might plan a concert but always had back people if we couldnt go. Let me tell u he would drink lactulose like crazy to make sure he wasnt crazy so we could go to a concert. He even hounded his Drs one time to discharge him to go see Jethro Tull in the city, he went IV lines and all. The only thing about that was figuring out if Tull was better younger or was it cause we were straight. Life is just a bigger balancing when sick...... you still have to find the humor where ever you can, the love in your partners eyes and never lose hope for each day!

Sue

Posted 7/1/2010 3:51 AM (GMT 0)
"The only thing about that was figuring out if Tull was better younger or was it cause we were straight."

Probably both, Sue! smilewinkgrin
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