I was recently at my GI appointment and was telling her that due to my low mood and irritability, I'd started back on my light therapy. I have a litebook, which is a small portable device you sit beside you in the morning for 20 minutes while read or watch TV. Of note, it's also good for jet lag.
Anyway, I was telling her that I seemed to have more energy (still feel fatigue but not as severe) and my sleep has gradually improved. She said she was at a conference where they were discussing this study in the Netherlands using light therapy on PBC patients. She said that she didn't know if the type of light was the same or different than the my litebook.
Anyway, I found the study and it was on 15 people and early times for this type of research but subjectively, it has made some difference.
From the conclusions of the study:
"In the present study, we confirmed that non-cirrhotic patients with PBC and patients with cirrhosis of etiology other than PBC exhibit impaired sleep quality compared to healthy volunteers. In addition, we observed that a brief 15-day course of morning bright light treatment significantly improved both sleep quality and sleep timing in patients with PBC. Specifically, light exposure resulted in improved subjective night sleep quality, reduced daytime sleepiness and earlier sleep onset and get-up times. In addition, more robust aMT6s rhythmicity was observed in PBC and cirrhotic patients after light treatment. These are novel and potentially relevant observations that need to be confirmed and studied further for their potential efficacy in terms of amelioration of specific disease symptoms."
It was published in a very reputable journal Published online 2018 Nov 5.
The litebook I use is here though I can't say if they wavelengths are at all similar, just sharing this as I find it really helps. I plan on using it daily.
Thank you for posting this it's very interesting.I take hours to get to sleep it's usually past 2am despite being tired and trying to get to sleep from around 10pm.I might give this a try as I also suffer terrible fatigue.
You're welcome. I thought it was worth a try. I used to work at a mental health team and part of the treatment for sleep disturbance was setting your internal clock for waking up. Of course, with any sleep disturbance, the underlying diagnosis (es) may warrant other treatments. However, waking up at the same time each day and using the light around the same time each day was worth a try, I thought.
I'd tried Modafinil but couldn't take it because of the side effects (agitation and stiff jaw).
I wish you well, Jane, with your sleep and fatigue!
Thank you for posting, Iam one with disturbed sleep, I was given amatriptaline by the rheumatologist. However with sicca syndrome I couldn’t take it, it made my mouth so dry, it gave me a sore cracked tongue.
I had looked at these lights some years ago before pbc dx, I was thinking at the time that I never felt quite right once October came around and the days were shorter. I felt deprived of sunlight not exactly suffering with SAD but enough to want to sleep when it got dark. Its always been a family joke that I needed to hibernate all the time it was dark. So perhaps time to look at it again.
I have sicca syndrome too and amitriptyline is quite drying. With medications with dryness as a side-effect, I've found it really made my dry eyes significantly worse. I tried a teeny dose of it for pain and had to stop it.
I do think for milder forms of low mood/sleep disturbance, it can be helpful. I was skeptical when I first heard about it but heard about some people who seemed to benefit. I suspect a lot of people have mild SAD. PBC; it will be interesting if there is more research done.
You're very welcome, butterflyEi. I was glad my specialist mentioned the study as she'd just heard about it. It was just a coincidence I'd started on my light therapy a week prior. I have no idea if there are different light waves from the research and the regular lights for mood. Anyway, I feel a bit better; not huge but enough to keep using it.
I asked my husband how long it took him to feel a difference because I was wondering about the placebo affect but he said he notices a bit more energy right away. I wish people could borrow them to try them out.
That's really interesting, and I would like to pursue research into this.
I want to find something that would be suitable for my partner, who has terrible sleep and tiredness problems - and liver issues, though not PBC.
I see this article is in German (I think) and I could not find any obvious links on the site for a translation. Can anyone suggest information on reliable sites in English, for the types of light similar to this?
The article comes up in English for me. Perhaps you could try looking at it again with a different browser. Here's an article from the American Journal of Psychiatry but it's not related to fatigue from liver issues:
This is really interesting. I live in Miami and get outside at least twice a day, but maybe I should make more of an effort to really soak up the sun! Is the kind of light you are talking about supposed to replace sunlight?
This is the first thing I've seen that mentions interrupted sleep and early wake-up as a PBC symptom. It's been a big issue for me at least for the last three years or so. I have no problem falling asleep, but I wake up usually once in the night and at 6:30 a.m., on the dot almost, no matter whether it's the weekend or what time I went to bed. If I'm lucky I can go back to sleep until 7:30.
Good questions about sleep disturbance and PBC. I'm certainly no specialist on that but have heard it's common. Waking up in the middle of the night can be age-related. Again, not related to PBC but waking times are often related to circadian rhythms. Once's brain gets used to waking at a certain time so as you cycle through the stages of sleep, including the deepest sleep, a person's brain wants to cycle so you're not in a deep sleep when you wake up in the morning (wake feeling refreshed). Of course, those of us with PBC would love to feel refreshed. LOL Interesting aside: For people who do shift work the worst times for alertness is 3-4 a.m. which is when many of the world's biggest disasters have occurred. So, it's complex.
My apologies for being off-topic. I think the light therapy/PBC is something new but for people who would benefit from antidepressants, etc., I personally think for any significant depression, that I wouldn't call it the big panacea. I wonder about augmentation with light therapy but again, this should be discussed with ones's physician.
Thank you for the information. Sounds interesting. I actually got a light last year but I haven’t started to use it yet this winter. A note of caution. My husband is an eye doctor and he alerted me to the fact that we Should not look directly into the light. Otherwise he maintains it is safe.Thank you for motivating me to start up again!
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