Hello and first of all Merry Christmas/Happy Holidays 🎄🎉
Chronic daytime sleepiness has been an issue for me since developing PBC. Fatigue and cognitive issues have also been significant at times too. I’ve found the cognitive issues improved significantly after starting Ocaliva in June last year.
But at the moment my need for sleep is huge. I’ll sleep at night and then often sleep for several hours in the afternoon and sometimes morning. I just simply won’t be able to hold my body up and stay awake. I’ve just woken up from another afternoon sleep and feel I could easily go back to sleep.
Is anyone else experiencing this with their PBC? Has anything particular helped? I’ve also developed the symptoms of mast cell activation syndrome (MCAS) so I’m not sure what is causing what, as apparently both can cause significant daytime sleepiness.
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Turquoise2075
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I'm so sorry. Somehow I missed your post. Fatigue is such a common factor for many with PBC - certainly to varying degrees. How this much be impacting your quality of life! Not sure if you are here in the states or not but there is a drug called Provigil (Modanfinil) that used to treat excessive tiredness or sleep conditions. You might just mention this to your doctor. I know many in my other support group had success with it. Let me know if anything seems to help...
Many thanks Donna. I’ll have a look into that drug. I’m in Australia. The more I’m reading about mast cells, I think they’re quite an important part of the picture. They seem to be overactive in PBC and part of the biliary damage and potential fibrosis. I’ve developed full blown mast cell activation syndrome this year, triggered by the oestrogen in HRT medication which I’ve had to stop. But I think it’s taught me something about the role of mast cells in PBC too. I think if I can find ways to reduce the mast cell activation I will have less severe sleep attacks, which is the best way I can describe this strong need for sleep. I’m researching as much as I can. Yes, I will let you know if I find something that works.
Last Spring I was in Edinburgh for their International Summit. There was an amazing woman there from Australia. Sally Castle is the CEO is the liver foundation in Australia.
please reach out to her... sally@liver.org.au Please keep in touch.
Hi Turquoise2075, your post caught my attention because you're dealing with MCAS, like me. I currently have the opposite issue with sleep (not always able to sleep as much as I need to) because of high histamine related to the MCAS. (Histamine is excitatory.) Since working with a great naturopath on reducing histamine and stabilizing mast cells, I'm better able to sleep a normal amount. However, I used to have significant daytime sleepiness when I had an excessive amount of candida overgrowth, and probably other gut overgrowths. Correcting these overgrowths has been a work in progress for years, but I'm slowly getting there. I no longer have candida overgrowth but do have other bacterial overgrowths that are being addressed. One of my issues is extremely low stomach acid, which contributes greatly to the overgrowths. Once I started taking betaine HCL when I ate protein, and general digestive enzymes with snacks or meals without significant protein, the overgrowths improved, particularly the candida (which did cause me excessive sleepiness). I'm sorry you're also dealing with MCAS in addition to PBC.
I am just now looking into the whole 'gut health' information. It has such an impact on our whole body. Do you have a book on it that you recommend? Glad you found something to help you.
I've read so many books or parts of books that discuss gut health it's hard to know where to start! I'm going to give you a list so you can maybe read descriptions of them or find the table of contents online and see which might be most pertinent to you. I also have Hashimoto's and some of the books I'm going to list are about Hashimoto's but they have sections that discuss gut health protocols that are excellent, so I'm including them. I feel like since Hashimoto's is far more common than PBC there is a lot more written about it, but I think the gut health is as much (or even more) tied to PBC as Hashi's is.
A good general book is: Digestive Wellness by Elizabeth Lipski, PhD
Another is: Healthy Gut, Healthy You by Dr. Michael Ruscio (he also has a podcast)
If you wonder whether you have low stomach acid: Why Stomach Acid is Good for You by Jonathan Wright, M.D.
If you suspect food intolerances (or even if you don't, it's a great book and does discuss gut health): The Elimination Diet by Alissa Segersten and Tom Malterre. Alissa Segersten has several great cookbooks, also--gluten and dairy free.
I've learned SO MUCH from both these books: Why Do I Still Have Thyroid Symptoms AND Why Isn't My Brain Working -- both by Datis Kharrazian (gut health is the root cause and these books do a deep dive--highly recommend! He also has a website and online courses, and if you search his name on podcast platforms you can listen to interviews.)
Hashimoto's Protocol by Izabella Wentz (she has a comprehensive website where you can likely find a lot of great info on gut health.)
Beyond all of that, if you look into autoimmune diets you will also find a lot of information about gut health and how it relates to whole body health. Good places to start include:
The book The Wahl's Protocol by Terry Wahls, M.D. (Your library may have this--the author dramatically reversed her M.S. by changing her diet and working on her gut.)
Dr. Sarah Ballantyne, previously known as Paleo Mom, has written several books on the Paleo diet, much of it geared for people with autoimmune diseases. Her older information was very helpful to me. She has in recent years changed her tune on her perceptions and I think she's off base now (my opinion).
There are other books and cookbooks on the Autoimmune Paleo Diet out there that have also been helpful. And lots of podcasts. If you want more details, let me know. I can be more specific.
I hope that's not too many choices/too overwhelming. Hopefully you can read reviews online and see what resonates with you. I definitely think working on gut health is a critical piece that we all should be working on, and it's often overlooked by our hepatologists and other doctors. The work I do with my naturopath has rescued me/saved me from more severe symptoms and disability.
Hi periwinkle88, Thank you so much for your response. I have had sleep issues in the past in terms of not sleeping but at the moment I’m sleeping a lot, I’ve had huge issues with histamine and I’ve had to go on a low histamine diet. For a long time I couldn’t keep food down if it contained histamine, liberated histamine in the body or was a DAO inhibitor that inhibited the enzyme that breaks down histamine. Thankfully that part is starting to improve. I take DAO supplements before many meals.
That’s interesting the daytime sleepiness you experienced with a candida overgrowth. In 2022 I was found to have an overgrowth of a bacteria in my gut following microbiome testing with a naturopath. The supplements he put me on cleared it and also balanced my liver readings for the first time in several years. I feel there are connections between all these things. Thank you for sharing your experience as it could well be another overgrowth contributing to the sleepiness now. My histamine intolerance was so bad I had to stop my supplements which may in turn have led to an overgrowth, along with my diet becoming limited.
I’m sorry you’ve had to deal with similar challenges. Like you I’ve found it’s the naturopath who’s been more helpful. Doctors haven’t known or understood MCAS. I think I may be returning to the naturopath soon. Thanks again 🙏
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