Severe insomnia

[Bogeeman]

Does anyone else suffer from never ending insomnia ? I seriously never sleep. My brain will not shut down.

[Hidden]

Hi

Some nights I wake up about 2-3am and can't get back to sleep. Then other days I sleep right through. Not sure if it's the PBC or the Ursofalk. Maybe your worrying too much about the illness. I try to block it out so I don't stress.

Maybe see your GP or consultant and discuss it

Good luck

Mike

[Hidden]

I have poor sleep patterns, I am so tired by 9pm sometimes earlier, I crash out then wake at about 3am and that's it for the night, but that is 6 hours so I try not to worry about it. I think it's more important to have a good quality sleep over the number of hours. It's just very odd being up at 3am when everything else sleeps. Not sure it's related to PBC though, it only started when I retired.

[Hidden in reply to Hidden]

Hi 'candy12',

I also have sleep patterns similar to your's - 3 am is my time to 'surf the net' lol, not much else is open at that time of the morning.

My sleep patterns changed over a number of years (before I retired) which prompted me to do a bit of research to see if it was related to PBC, I came across a number of articles that pointed to 'sleep' abnormalities in PBC patients, one in particular states:

"Sleep abnormality has previously been documented

in cases of PBC, with patients who self-reported fatigue showing the greatest levels of abnormality."

The link to the full research paper is below - I'm a bit of a 'research nerd' so I read the whole paper, but just in case you don't want to read the whole thing I would draw your attention to the 'Results' section (a bit technical) and more specifically the 'Discussion' section. For me, knowing what/why things are happening make living with PBC a little easier.

Oh, I should also note that this particular paper is fairly dated, but I have not come across any later studies concerning 'sleep patterns in PBC' - that doesn't mean that they're not out there though.

onlinelibrary.wiley.com/doi...

[Bogeeman in reply to Hidden]

My problem is my brain never ever shuts down no matter how hard I try - I aging in dog years and debilitating fatigue is killing me..

[Hidden]

Thank you I will read the paper, I had read somewhere about the sleep and the liver but never followed it up.

[badpiglet]

I've suffered from insomnia for about 26 years now but at long last, over the last 6 months or so have begun to get on top of it. At it's worst I was getting 1-2 hours very shallow disturbed sleep a night, every night. Now most nights I can get 6 hours with maybe only waking once or twice - this for me is fantastic - I can function perfectly with 6 hours and not be suicidal or significantly, dangerous to others eg driving.

I'll list what I've changed to achieve this but bear in mind your PBC symptoms and state of health may have a different bearing on it than mine (symptom free).

The most important thing - 99% caffeine free diet ie limit of an odd coffee once every few mornings or so. Never more than one cup, never later than the morning. No tea, no cola, no chocolate. Reckon I might have been highly caffeine sensitive.

Restrict eating anything rich or big portions in the evening, or consuming alcohol or drinking too much liquid.

No daytime napping or evening dozing. Ever. If I'm seriously knackered then manage to keep awake till say 9.30 then go to bed properly and not rushed. This means no David Attenborough or most other nature TV programs as they always lead to dozing.

No computer activity after about 9pm or so. Or iphone or anything similar. Really lively exciting films also are bad and get your mind overactive but these days the number of good exciting films being made is few and far between! No manic evenings rushing around. Keep rushing around for the daytime. No computers or mobile phones or TV in the bedroom.

Keeping very roughly to the same bedtime with a calm, non-rushed bedtime routine. For me that's just calmly getting stuff ready for the next day, a nice warm bath (not too hot, not too long) and a good book. Avoid any conversations with partners or family that require too much thought or emotion. Try not to think during this time of anything that will stir your emotions - particularly negative emotions. Keep depression/sadness/anger/frustration for the daytime - not the hour or so before bed. Distract yourself with boring calm routine.

Have a completely dark bedroom that's not too hot with bedding that's not too hot. Buy top quality ear plugs if necessary.

If you're in bed reading, letting yourself go to sleep as soon as your eyes start closing ie never over-ride getting dozy eg never keep wake to read just a few more pages.

If you wake up, try if humanly possible not to get up or switch on light. If that's impossible, then read a book (but not one that's too good or too exciting) until you relax & your eyes start closing again. If you lie there and think of your problems, sleep will never come. So read a dullish book to stop any thoughts.

I've just read this list again and it sounds so, so boring and anal - but having been through 26 years of utter desperation for sleep, I will do anything now to get a few unbroken hours. I've needed dull and boring to stop the million manic thoughts whirling around my head like they're in a washing machine spin cycle. Dull, stable and boring for me is just fine - it's working for me and if it helps you Bogeeman, that would be great.

[Bogeeman in reply to badpiglet]

Thankyou so much-

[Harley2016]

I sympathise with you as i also don't sleep well now, my brain always feels active ,I just won't switch off , so I probably only get about 2 hours deep sleep. I never had an issue sleeping before , I would be sound asleep within minutes, it's now taking its toll on me as I struggle to stay awake at work and the simplest task is difficult.