How are you sleeping?

[IAmTheGlue]

Literally… how on earth are you sleeping, because I can’t sleep. I have PBC/PSC overlap and am in early cirrhosis. I take Urso, Ocaliva, Prednisone, Salagen and thyroid meds by prescription.

I was taking Benadryl a couple days and it was perfect, out like a light. I read Benadryl may not be safe for long term use with liver disease/cirrhosis. I had melatonin in my hand ready to take when I had second thoughts and looked it up and read it may not be taken with prednisone.

Anyway, I am up every night at 4am and I can’t go back to sleep. I am a little itchy but not terribly. I get plenty of sunshine and exercise, my only caffeine is coffee at 7am.

If you’re sleeping well, please let me in on your secrets.

I am going to email my doctors for advice, I just wanted to know what you guys are doing.

[gwillistexas]

Good Morning. I sleep very well. The only time I don’t, is when my thyroid is in hyper mode. Do you think the prednisone may cause it?

[IAmTheGlue in reply to gwillistexas]

Thank you for your response. ❤️

Maybe it is my thyroid? I have been on prednisone for 5 years so it would be unusual for it to start causing sleep disturbances now.

Maybe it’s just stress… I’ll email my doctor and ask him for suggestions.

Thanks!

[PollyO in reply to IAmTheGlue]

You can also use pot. My step daughter uses a small amount at night in a brownie and it really helps her sleep and takes down the inflammation her rheumatoid arthritis causes.

[4pjx__]

Hi! I have cirrhosis as well. Not too sure what stage. Anyway, my sleep is often rough. I usually fall right to sleep but wake up sometimes between midnight a 3 A.M. This has been going on for more than 20 years. Sometimes I listen to a YouTube meditation. Lately I like the ones from The Mindful Movement. Sometimes it helps me get back to sleep. Not always though. If I feel too tired during day I will take a short nap. I do excersize every day . I have even tried working out extra hard but that doesn't seem to help me sleep any better. My thyroid seems to be okay.

I hope you can find a solution

Pam

[IAmTheGlue in reply to 4pjx__]

Thank you for your response. That sound pretty similar to my situation. I try to lay quietly as well until at least 6 am. I don’t want to make my husband nuts so I try to be in bed for the normal time. I think I will do that, get a meditation ready to go for when I wake up and just pop my AirPods in.

I did the same thing. I try to really wear myself out. I got 18k steps yesterday, dripping sweat on my treadmill, yoga, bowflex for a little strength training and still 4/am and I’m wide awake.

I usually have to take a little nap in the afternoon as well. I am thinking maybe I need earlier morning sunshine to straighten out my circadian rhythm.

Thank you again. Have a great day!

[JBH2000 in reply to IAmTheGlue]

I have an awful time sleeping. I’m on Urso, but recently had to take steroid pack for a week, and that was awful for sleep. I do have a medical pot card, but that doesn’t really help. I listen to podcasts - set the timer on my phone for 30 minutes- usually I’m asleep within 10 min!!

[IAmTheGlue in reply to JBH2000]

I will try that. I will try anything at this point. Maybe I need an audiobook or podcast.

Thank you for your suggestions!

[hypnovoice in reply to IAmTheGlue]

I have the same problem, waking up between 12 and 4 A.M. actually. I do fall asleep around 7:30 though because I am tired from waking up so early. I have tried taking Tylenol PM and Trazodone to sleep longer and go to bed later, but they make me groggy for the rest of the day.

[IAmTheGlue in reply to hypnovoice]

I added a protein shake at bedtime of casein protein powder and almond milk. I’m going to switch to soy milk when my almond milk is empty as it is another complete protein and I don’t need the calories of adding like 12 oz of milk.

Anyway, I’m sleeping much better.. up to 7 hours in a night. I still need a nap in the afternoon, but It’s just a protein shake not a magic potion. I hope that helps you, too.

Have a great day! ❤️

[hypnovoice in reply to IAmTheGlue]

Thank you. Have a Happy Day as well.

[PollyO]

I stopped reading our US news in bed. I generally fall asleep right away. If not I get up and eat something and that does it.You an I are almost exactly the same in our autoimmune although I don't take anything but Ursodiol and of course vitamins to fight the leg cramps.

Try a flat ice pack on your neck, does the trick for me most nights.

You cannot take anything like Benadryl for sure unless it is non-drowsy. In fact, cut out all the drugs that are not absolutely essential.

The other thing I started doing in advice of an oncologist who knows PBC, is to use a protein mix to keep my body from eating my muscles and it shores up our blood vessel walls. Another fella who knows physiology told me to use casium (sp) or "slow" burning protein mix at night.

Hope that all helps.

Best.

[IAmTheGlue in reply to PollyO]

Thank you! I will look for that protein mix. I drink a protein shake in the morning, but maybe I will do protein at night as well.

[IAmTheGlue in reply to PollyO]

Thank you again for this suggestion. I’m probably a week into drinking the casein protein shake at night and I’m sleeping so much better. 🙏🏻

[hypnovoice in reply to PollyO]

Hi Polly. I find your comment about a protein mix to stop your body from eating your muscles and shoring up blood vessel walls interesting. I did not realize and have not been told that PBC causes this kind of damage to muscles and blood vessels, but this has been happening to me, so I will try a protein mix and see what happens. Thank you for the information.

[Terri-Lynn]

I too am a troubled sleeper and have been for several years. Started using a C-Pap machine and once I'm asleep tend to sleep for a longer period of time. Have physical appointment with my primary and have this topic on my list. Have been taking Urso for almost 2 years along with thyroid medication since my I had cancer. My normal regime is to put a quiet-type movie on with the TV on a timer for an hour and usually asleep by the time it's off.

If you find any other solutions, please share. Thank you so much.

[IAmTheGlue in reply to Terri-Lynn]

I have been trying 30grams of protein at bedtime and it seriously helps! I have the casein protein powder on order, but what I am using now is members mark protein shake and even that helps. I’m sleeping markedly better.

[islandanonymous]

I have PBC and compensated cirrhosis. I've been sleeping extremely well these days but seem to go through spells when I wake up in the middle of the night and can't get back to sleep. Hasn't happened in a long time though. I've always fallen asleep as soon as my head hit the pillow. When I had a hard time sleeping I found that a sound machine helped tremendously...I have an inexpensive one by Conair that has a lot of different sound settings. I think an eye mask might help too.

[IAmTheGlue in reply to islandanonymous]

I’m going to try those, I ordered the eye mask this morning. I added a casein protein shake at bedtime and I’m sleeping sooooo much better. I do workout quite a bit, so maybe I really needed the protein? I don’t know but it seems to be helpful.

I was reading that people think of sleep as a period of inactivity but it’s actually when your body is working hard to repair, so some people need that protein to help their body heal.

Thank you for the suggestions!

[islandanonymous]

Good luck with it! All the best!