First thank you to those who have responded on my first post. My parents and I are taking the advice to travel this April to the PSC conference in Denver. I’m looking forward to meeting more people who are struggling for answers like us. Currently most of my symptoms have remained dormant since Christmas, however I can’t seem to get my insomnia under control. I’ve struggled with severe insomnia for the past year and have been prescribed (by my family doctor) Trazadone, Ambien, Clonzeapam, Lunesta, and several others. I’ve also tried benadryl, melatonin, yoga and exercise before bed but nothing is doing the trick. I should also add I do not drink caffeine, I do not smoke and since my diagnosis I have not had any alcohol. I’ve reached out to my liver specialist via patient portal and have not received a response yet. I have my monthly blood work appointment on the 15th but i’m not sure I can wait that long. The insomnia is affecting my everyday life as I am still taking online classes through my university and working. I’ve also tried staying up the entire night hoping to fall asleep at a normal hour the next day only to have failed results with that. Has anybody or is anybody struggling with this? If so what medications or techniques were suggested for you?
It affected me too. I am up several times a night to hit the BR anyway, and there were many nights I was surfing on the computer with no hint of sleep.
Do I have any tips? Take naps anywhere and everywhere you can. There were many weekends I had three-nap days each day.I did not take medication for it.
Hello, Have any of you tried Doxepin? It is an older tricyclic antidepressant. A couple of years ago, by using a smaller dose (like 5 mg, I think) they marketed it as a sleeping pill. It does help insomnia, but you would need 10 mg minimum, or more. The good news with this medicine is that it also treats pruritus (itching)! People who use it as an antidepressant use pretty high doses (50-150 mg), so the 10 mg for sleep is a small dose. It will cause next day drowsiness. (P.S. the generic is cheap), Good Luck! Let us know if it works for you.
Hi, it affected me too up until my transplant. I tried everything from Melatonin to prescribed drugs by my liver doctor but nothing worked. Luckily i started working from home and I would just take naps through out the day and do most of my work at night. For some reason for me it was much easier to sleep during the day. Not sure if this is an option for you.
Hello! Thanks all for the responses so far. I contacted my liver doctor and he doesn’t seem to understand how severe my insomnia is and said that Tylenol pm and melatonin were their preferred methods. I do understand this but was very frustrated with him as I told him before unfortunately those do not work for me. He also said if I wanted ambien my PCP would have to prescribe which I was able to get him to agree to, however this can only be a temporary solution as it can affect the liver. I see my liver doc next Wednesday so I’m eager to ask him about the Doxepin to see if that would be an option for me. Right now it isn’t ideal for me to sleep during the day as I am still taking classes through my university.
One question I have for you. Are you doing a lot of heavy computer or television watching before you go to bed of an evening? I found out recently using high-quality blue light glasses one to two hours before bed will help you maintain melatonin levels to get a better night of sleep. It has done wonders for me. There are many different qualities of blue light glasses and I’ve tried a few. This is one that has worked great for me. I hope it may be of benefit to you as well. I wish I had known about these prior to my transplant.
I have been keeping my phone faced down at night, I am guilty of using my computer for a bit before bed to work on homework for school. I’ll have to look into these glasses thank you very much for the suggestion.
My wife turned off the blue light component on our computer. Not sure how, but that might be a possibility.
Great point. We did that as well. It kicks in at sunset till sunrise.
Many cell phones have this feature also.
I have taken Doxepin for several years now and have had months of insomnia along with months of good sleep. I use a powder called youtherory that I get from amazon and most of the time I seem to get good sleep. I also go lie down anytime I feel sleepy. My DO Dr. and I have tried many things also and since I have a lot of arthritic pain I have always thought that when I get my pain under control I sleep well. Maybe not and if that’s the case I really don’t have anything to contribute here. I thank God every morning if I wake up and feel like I have rested. I have dozens of other AI diseases also. Try doxepin. Who knows?
Glena374, welcome back!
I hope you have been doing well.
Hi! I’ve been struggeling with insomnia too. In my case it always gets worse when my iron deficiency is really bad. I am not sure if its even realted to my PSC. Maybe you could check your ferritin and transferrin levels, if you have struggled with iron deficiency and anemia before.
Doxepin helped me as well.
You might consider exercising very early in the day. If I did yoga and exercise before bed, that would keep me up.
I started taking Melatonin. Not sure if it helps or hurts. For the last several years, I might have some insomnia here and there, but normally, I have no problem getting to sleep. The problem is staying asleep for longer than two or three hours.