Hi, my husband has recently diagnosed with PCS. He has sleep deprivation and has been taking Ambien to help with it. Based on his research, the Ambien is not good for the liver so he’s trying to minimize the intake. Is it true? and if it is, is there any herbal supplemental like tea to help improve the sleep quality? or taking Melatonin is the best option? What is the effect of Melatonin to the liver? Thanks for the inputs!
I’m sorry to hear of your husband’s diagnosis but you have come to the right forum. We are totally dedicated to the support of patients and families of patients with PSC. Any and all questions are welcome. We want to provide you with the very best information we can as he faces this new challenge in life. Education is key, and the more you know about PSC the better he will be able to manage symptoms, etc.
Of course, any decision about medications or supplements need to be discussed with his hepatologist. Please make sure he’s seeing a hepatologist with a major transplant center. Try and avoid your hometown GI doctor as they just don’t have the specialized training to deal with this disease in most cases. I believe Melatonin is a very good choice for aid with his sleep. In addition to helping him rest it promotes bone health and other things as well. I take 6 MG of Melatonin right before I climb in bed of a night. I get mine online through Walgreens in large quantities. (https://www.walgreens.com/store/c/walgreens-melatonin-sleep-support-3mg-quick-dissolve-tablets-cherry/ID=prod6253527-product)
My hepatologist has approved the use of Melatonin and indicated no issues in taking it. Again, check with his hepatologist to be sure. We look forward to hearing from you and please encourage your husband to join in the online conversation as well. It’s important he not bottle all this up inside of him. He needs his family and close friends to learn all they can about the disease so they can give the love and support he will certainly need as the progression of the disease comes about. Take care.
PSC 2011 / Liver Transplant 2015
Thanks Mark for your kind words. I have mentioned to him about this forum and he’s still struggling with the fact he has a chronic disease so he’s still in denial and sometime avoid talking about the subject with others. I’m not trying to push him. I think he needs to do it on his term but at least I can provide support for him. He does have Hepatologist who will monitor his condition going forward and I will suggest him to bring it up on the use of Melatonin. Thanks again for the support!
Just a quick follow up. I know well the struggle your dear husband is going through. When I was first diagnosed so many things went through my mind and heart. Who would take care of my wife and children, and the list goes on. But after the initial shock of all that and the heart break and heart ache, I had to pick myself up and fight to live. I educated myself in any and every way I could about PSC. I live and breathed it yet at the same time I went on with my life. He must do the same. Get it all out and then purpose in his heart he is going to live and fight this thing. He must live for you and your family. Just take one day at a time. When he’s having good days just carry on as normal as possible. When he’s just not feeling all that well, well just slow down and get right down in there and do the best you can and enjoy that as well. I tell you one little thing that was so precious. When I came home from work and just collapsed in my recliner from exhaustion from the weariness that PSC causes, my dear youngest daughter would come in from work and rub my feet just about every evening. My wife and daughters would rub my back and feet, anything to bring some relief, even if it was only temporary. Those were special times that I will always cherish.
Please tell him if he ever wants to talk with someone who has been through this disease I will be glad to have a man to man phone conversation with him. Anything I can do to encourage him through this struggle, I certainly am willing. Just private message me and we can arrange an appropriate time for both of us. That is if desires it at some point, no pressure whatsoever.
Granted, I’m not a medical professional, but there has been no actual clinical studies done that indicate melatonin helps with regular insomnia. It appears to be most helpful with shift work disorder and jet lag on a short term basis.
I also find it disconcerting that melatonin is now being championed as helping with the following:
Alzheimer’s disease, tinnitus, depression, chronic fatigue syndrome, fibromyalgia, migraine, irritable bowel syndrome and epilepsy…
Really? Does that sound more like snake oil than anything else to anyone else? I personally have very strong doubts about melatonin. I think the best thing you can do for good sleep is to develop a good night schedule and pattern of behavior. Trigger your body that it’s time to sleep by doing the same thing every day to get ready for bed.
I have also been told by neuros that part of maintaining good sleep is getting up at the same time every day. What time you go to bed isn’t nearly as important as what time you get up.
Thanks Mark - I’ll keep this in mind
Thanks Azurelle, I’ll mention this to him. It must be hard at start to maintain a consistent time to get up but I think as time goes by our brain and body will adapt and adjust.
Good advice Mark. Having sleep problems is a common problem for people with PSC. One theory is that it reverses your inner time clock. I became a night owl. I found good sleep hygiene helped but I’m not good at routines but it helps. Most important is shut off tv, computers, smart phones two or three hours before bed. No napping. Reduce caffeine. Go to bed and rise same time every day.
I am sorry you and tour husband have to face a psc diagnosis. Letting him find his own process for dealing and with your love and support is wise. It’s so hard to deal with a chronic disease with no cure or prognosis. I’m glad you found this group. We have all experienced getting the diagnosis and living with PSC. Remember PSC doesn’t ruin your life but it changes your life.
Thanks Jennifer for the kind words and support.