Sleeplessness.

[Jaycee]

Hi There, I was diagnosed via,a biopsy and poor liver tests,I also have underactive thyroid,and osteoporosis diagnosed via a dexa scan, I started on Urso, at first I was ok with the Urso now I can't take it, after speaking with my consultant she is happy for me not to take the meds as my liver function tests have been normal for the last 2 years, I also have normal calcium levels and don't need meds for that either,I am very lucky, however, is there anyone out there suffering from really bad sleeplessness,I wasn't always like this and wondered if it's anything to do with the illness, I also have the dreaded fatigue, so with the 2 combined, it's not easy, any advice would be greatly appreciated, Thanks for listening, Stay well everyone.

[cazz22]

Hello Jaycee.ive been struggling with urso capsules and now have tablets which are much much better however I feel better without taking them .my bloods are only slightly high and the only thing I really suffer from is pain in legs and feet(another reason I'm sampling not taking urso).i also have noticed strange sleeping habits.i go to bed tired then either sleep for two hours wake for a while nod off again and so it goes on.most mornings don't feel refreshed(oh how I long for that feeling)I've tried separate beds more to give hubby a good nights sleep from my restless tossing and turning.nothing works.its either my age(54)or pbc.anyone know of a cure please!

[Saundrella]

Hey, I know exactly what you guys are talking about. For me, I'm experimenting with the idea the sleeplessness is not due to the disease, it's due to anxiety. We aren't the only people who are sleepless, ya know?!! Earlier, I used to not sleep at all, told my liver doctor and he gave me some medication he gives other liver patients who cannot sleep. The med didn't help at all so I stopped taking it. Then I decided to stop thinking so much about my disease, worried about this or that, doing research, thinking, thinking, and purposefully started doing something else, totally unrelated. I made sure to exercise regularly on the treadmill, eat well and in the process, right now, of returning to as normal a life as possible. Yes, I have fatigue, am not able to do as much as I once did but so what?!! I am able to do things other than thinking about my disease! I just started experimenting with this so it's too soon to tell if I'm on the right track but I do believe I am. I know, earlier, when the same thing was happening (sleepless), once I started doing something else, I started sleeping again. Now, I'm thinking about my disease, again, and am unable to sleep again. So I'm wondering which is it, do we get sleepless because of something about the disease itself or are we sleepless because we are anxious about the disease process or something else going on in our lives that we are unable to change. I'm doing what I can to get back to living as normal a life as possible in spite of PBC. Why let it take away whatever quality I have to whatever is left of my life. I'm well compensated, now, (no bleeding varices, yet) I don't know what tomorrow brings. I'll let tomorrow take care of itself. For right now, I just want to return to as normal a life as possible. I happen to think I'm going to sleep better, then, just as I did earlier. I do believe this sort of approach is like taking Urso, it's going to extend whatever quality I have left to my life instead of shortening it.

[POZY in reply to Saundrella]

I am soo with you Saundrella. It truly is about the NOW. I am doing the exact approach as you and feeling great. You have to be positive! Thank you for your post

[Saundrella in reply to POZY]

Hi, Pozy. What are you doing to help yourself do better? Saundrella

[POZY in reply to Saundrella]

Well I quit eating meat. I listen or read positive inspirational books or cd's and if I wake up at night I like to turn on real low a cd called Delta Sleep System. But I try and exercise even if it is a little bit. The fatigue gets to me to where I can exercise sometimes but.................. we do have this disease and are going to have to live with it and can not dwell on it 24/7. As the saying goes "it is what it is". We just need to learn to deal with it and get help and new ideas from others like you on this forum. I drink different kinds of tea which I never have before, which helps too. Good luck and if you ever want to talk let me know.

[Saundrella in reply to POZY]

Thanks, I'm making a note to myself about your offer! :o)

[Jaycee in reply to POZY]

Hi Pozy,Thanks for your reply, it's interesting what you say about not eating meat, do you think that helps and why,and your comment about the tea, what kind do you drink, because if there is one thing I could NOT live without is my tea, my hubby is a marvelous tea maker,it's true what you say, learning to live with this bloody illness is so hard sometimes and affects us all differently, good days, bad days eh, I think what has not helped me lately is the fact that I've just lost my 2 little dogs within 6 months of each other one was 18 the other 12 years old, and you think you can just get on with it but very quickly I've realised it's hit me really hard, anyway, must stay positive and move on, so once again, thanks for taking the time to reply, it's very reassuring to know someone is listening, and a huge thanks to all of you out there, without you all, where would we be, stay well and happy,:))

[POZY in reply to Jaycee]

Hi Jaycee, I felt better when I stopped eating meat because of the fat. Fat is hard on our livers to process and if I had a steak or piece of ham for dinner I would feel it at night and just all around I felt good a week or two after, no bloating or weird noises my stomach would make. LOL As for tea I will drink the Chamomile and Tazo Chai Organic spiced Black tea. Im sorry about your loss also. I have gone through 2 major losses myself and did some reflecting but always Jaycee try and be positive because it will make our lives better and everyone around us. Stay as healthy as we can!!!! Talk with ya soon!

[Hidden]

Hello all.

Has anyone had their iron levels checked as low levels can actually cause insomnia as a lot of other things can. I personally do not think that not being able to sleep is due to PBC unless of course you have the dreaded itch that I have at night and sometimes that can stop you from sleeping.

Not being able to sleep could also be due to the age factor and going through the change (as I am now apparently in perimenopause (I am soon-to-be 50).

I know for myself, my often not being able to sleep at night after a long day started way back in 1989 when my late first husband started feeling ill. Being asthmatic he would often wheeze at night and I was often awake with him. Following his death in 1993 and having our two young children to look after I went through what is probably considered the norm, fear of things happening, being on my own but as time went on I sort of got into a routine of not sleeping properly.

Following my first husband's death I was found a few years later to be anaemic and was supplied with iron for a short while. I've since had 2 short term courses of iron tablets.

I remarried in 2009 after meeting up with my husband in 2008. I wasn't even married a year when I started with the itch that led to being diagnosed with PBC Dec 2010. I do of an occasion if I know the itch is bad, come downstairs and end up having a few hours sleep before returning to bed not long before it is time to rise again. I feel guilty these days as my husband is now in the situation that I was with my first husband, having a partner who finds it difficult to sleep during the night due to the condition they have and now my second husband is often kept awake due to my often night time wakenings.

I know I would say that in the last few months I've actually felt much better and got more sleep during the night. I do not come downstairs in the early hours much anymore due to the fact that for me I find that if I don't fall asleep later evening and go to bed just before midnight I can sleep well. Might be worth a try. I don't get fatigued so I do not go to sleep during the day. Oh yes I do often feel tired but it is different to the fatigue that I did encounter during 2010.

[GrittyReads]

I agree with Peridot about menopause being a possible cause of sleeplessness, and I would second her about checking iron. In fact, get vitamin and mineral levels checked generally: partly because they can also be awry with PBC and the other conditions. However, insomnia is one of the noted symptoms of hypothyroidism, so maybe see if you should be having treatment, or check your doses if you are already on thyroxin. My insomnia was awful with the menopause. It was mainly nightly hot flushes for me, but it wasn't until they got so bad and I realised it was the flushes that I sought help - by that time I was having dreadful migraines and neck aches from the tension and complete lack of sleep.

[cazz22]

I've had bit/iron levels checked.i only have half a thyroid so have my thyroid profile taken regularly which is also fine.i think I agree more with the stress reply by saundrella.its not so much worrying about pbc but other things like aging parents and even could I get another dog after my old beauty(still here)has left.always said if I couldn't exercise or look after one properly il stop having one.guess I'm pretty devastated to think he may be my last one.sorry that's my personal moan.sure many people in a far worse state than me.apologys to all

[Saundrella in reply to cazz22]

Cazz22 I have a 97 year old Mom to care for, too. She's in a nursing home but has all sorts of problems. Nursing homes are not the best places. I have to stay right on top of things or her issues can be neglected. They do pretty well by her, now, because they know I am there. I feel for those residents who do not have anyone to advocate for them!! I also have a problem within my marriage relationship that is not resolving easily although we are working on it. I could name you several other things that concern me but who needs to hear it. It's my stuff and you all have your own. So, for me, I think the sleeplessness is due to anxiety and stress level. I feel very overwhelmed, at times, and end up doing nothing even though I have much to do that needs to get done. That's the problem, too much to do, my mother depending on me, not being able to depend on my doctor to do the right thing by me (transplant in time before I get too old or sick for one). It's a big mix and I just need to shut it off and give myself a break. That's me. I was told my problem would be encephalapathy (toxins getting up to the brain) and so I was thinking my sleeplessness was a result of that because mixing up one's days and nights is a hallmark for that condition. It's such a mess because, once I started worrying about losing my mental faculties, I actually start losing them, forgetting more, because I was feeling more stressed!!. This is true of anyone who starts to think like that, though. So, there are a lot of grey areas in dealing with PBC. The doctor hears me say I'm having a hard time remembering things and at some point offers me a medication for it. YIKES! Apart from the pictures they have of our livers and the blood work, they have only what we tell them. And that can be inaccurate. To this day I don't know whether I am depressed about personal issues or having the PBC. And what is my fatigue all about? I suspect it's a little bit of both, physical and emotional. Mind and body, ya know?. So, you see, I need a break from my problems. I am smiling as I write this, talking about them!! But that's a good thing. I must not be taking them so seriously anymore!!

[KevinHall10_ in reply to Saundrella]

Good for you. I also have this disease on my mind, only because the symptoms won't leave me alone. I am in stage 2 from 2015. I get episodes of being really tired, which no longer working, so i just lye down. Some times last about 4 days. Other days i am tired, but can fuction. The episodes seem to be comming quite often. So when i dont have them , i could get caught up on things. I have an overlap from my first biopsy from 2015. I wished they would give me another biopsy just for piece of mind. My gastrointist told me i wad i. Stage 1 and then a specialist revief the sam sides and said it is stage 2. I am at a point, what do u trust???

[Val02]

Hi I have suffered from insomnia for the last 3/4 years. It comes in spells of 2/3 months, goes away as mysteriously as it started for several months then bam it's back. I think mine started about the same time as RLS. My doctor thinks it's a general autoimmune problem, and is related to the autonomic nervous system.

My doctor will medicate for it if it goes on too long - I fully sympathise it causes real misery. Take care

[Ellanvannin]

I too am suffering with only getting a few hours sleep. Once awake I get pain in my knees and ankles and burning up my shins. Not forgetting the sweats. ( too old for menapause)

I have developed awful pressure in my ears which is unbearable at times. Blacked out twice. wore a 24 hr. blood pressure monitor but Dr. has not got back to me so must be o.k. Having to care for my daughter who is recovering after 15 weeks in hospital after having had a stroke. Promised help has not materialised !! 72 and doing a 14 hr. day. If only I could get a nights sleep.

[Saundrella in reply to Ellanvannin]

Ellanvannin, if you haven't heard from your doctor, I would encourage you to contact him/her and get answers to your questions. I find, given the opportunity, doctors don't tend to share "bad" news, only the "good" news, unless a patient presses for the truth. Truth is important, to me. How else am I to know what's really going on? I would like to see you investigate, more, that pressure in your ears. Do you have portal hypertension? Do you receive medication to lower your pulse. I've had ringing in my ears for a long time, and never associated it with portal hypertension. I'm thinking, now, it makes sense I would have ringing in my ears due to hypertension. I don't trust doctors anymore. My earlier doctor told me much of nothing and so I had no idea there was anything seriously wrong with me, for years. If I had known, I now know there were things I could have done about it.... like taking the Urso 10 years earlier than I was finally started on it!! (Went to a different doctor) Now, I trust but verify as much as I am able. Having to do research, myself, is difficult but what's a body to do? Even at Mayo, my doctor is very well-qualified but even he tells me pretty much only the good stuff. I don't see him taking interest in doing something other than giving me the Nadalol to lessen my pulse so as to prevent a bleed. He gives me the Nadalol and waits until I have a bleed!! I would have him take some interest in slowing down the PBC autoimmune, inflammatory disease response. Why do some PBC'ers progress faster than others, for instance? Instead, the doctors have their official "protocol"...which says, "when this happens, do that". That's all they are interested in. Do I sound jaded? Maybe... but I don't feel jaded, anymore. I feel I'm being realistic, based on my bad previous experience with my original doctor. Now, as a result of trusting too much, I feel I need to keep my eyes and ears open and keep looking for someone who is interested in thinking outside the box in order to not just get along but do my very best getting along. Live doctors see so many patients. I could understand how they could get jaded, after awhile, seeing the inevitable outcome of PBC for so long. I think that outcome is on their mind, too much, and my having a life and desiring to make the best possible of what's left of my life doesn't seem to be on their radar screen. Twenty minutes for an appointment? At least my Mayo doctor will talk as long as I want but, even then, I don't see that sort of interest in me that I would like to see. Like my Mayo doctor told me, "Doctors don't practice medicine like that, anymore." No kidding!! :o)

[Kaywal]

Hi Jaycee. I've suffered from chronic insomnia since starting on urso which was ruining my life quite honestly. I've reduced the amount of urso I take and now I'm back to pain in colon, joints, reduced mobility and elevated enzymes. I was told when I was diagnosed that PBC isn't a serious condition and that it's far better than having, say, gallstones. It has certainly been my experience since that the medical profession don't really recognise any of the problems we have outside of those specific symptoms that PBC is known for such as fatigue and itching. The specialist (registrar, I've never in fact seen my consultant after first visit) says that my insomnia is caused by stress and my gp can only offer anti depressants.

It feels good getting that out!

[Jaycee in reply to Kaywal]

Hi Kaywal, I'm very lucky in that I don't have too many problems, I have the aches and pains, but I absolutely refuse to take the Urso again, since stopping it I have my life back, I insist on seeing my consultant before I go and she agrees with me re the Urso, as it's clearly not doing me any harm,but as for saying that PBC is not serious, who diagnosed you, an idiot???? I sympathise with you ,and anytime you want to talk just message me again, I will be more than happy to listen, try to keep positive, easy to say I know, you hang in there now.:))