Sleeping problems.

[Twojer]

Have any of you with PBC had sleeping issues and have been able to use sleeping pills with success and if so what kind?

I sleep 4-5 hours or less each night sometimes less. After about 6-7 days I might get 7 hours sleep and then it is back to the short hours of sleep. No over the counter sleep aids have seemed to help.

Thanks.

Linda

[Greeenbean]

I’m having sleep

Issues as well. Doc gave me Hydroxyzine to avoid opiates. Even 25 mg knocks me out for two days. So, I am hopeful someone will have other suggestions. Thank you, Genie

[Twojer in reply to Greeenbean]

Green bean

Thanks!Do you take it every night or just as needed?

Linda

[Greeenbean in reply to Twojer]

Sorry so slow to get back. As needed, but it really effects my day light hours.

[janetfolley]

Like you I have terrible sleep problems cannot sleep any longer then 2/3hrs GP won't give me any sleeping have been asking for years and over the counter tablets not good at all and now with covid can't even see a doctor

[Twojer in reply to janetfolley]

I don’t know what the solution is. I went to bed at11 last night. Just woke up at 3 am. I ram hoping several people will about what they are using so I can talk to my Gp about prescribing something.

[Biddyb]

Hi yep lots of problems lately sleep for a few hours wake up mainly for a pee then can’t get back to sleep for at least a couple of hours. My BP is sky high so one thing is feeding off the other, started to find a lot of calming and anti stress stuff on you tube and the last couple of nights I’ve done much better, BP also coming down a little. Might be worth giving it a go, let’s face it anything is worth trying Good luck keep us posted

[Twojer in reply to Biddyb]

Biddyb

I had tried some of the going to sleep things on YouTube as well as white noise but didn’t have much luck with them. They said it was best with earbuds but I don’t have wireless ones

So I kept having issues with them in my ears.

I am like you I can usually go to sleep okay but wake up around 2 or 3. I don’t take naps. I can go in to try to take one snd just lay there wide awake. LOL

Haven’t tried using the relaxing things in the middle of the night but might try doing that. Thanks fir the suggestion.

Linda

[Dinasmom]

I've had the same problem for years, even before I knew I had PBC. I went the prescription sleeping pill route, and while it helped for awhile, it led to a dependency on them for sleep. Eventually they no longer worked either. So I'm not a fan of a reliance on meds, and I went cold turkey off everything. What I try to do now is use a happy light in the morning during the colder months when there is less sunlight, and exercise by walking several miles early in the day.

I push myself through the fatigue and do NOT nap during the day, knowing it will only mess up my sleep that night.

As we age our natural melatonin levels drop so you might want to consider melatonin for sleep. It's not all that helpful to me, but it has helped others. Additionally, there are some preliminary studies that show some benefit to the liver from Melatonin. Just a thought.

If I were you, I would research as much as you can on more natural ways to restore your sleep cycle. There is a lot of info out there. Good luck!

[Twojer in reply to Dinasmom]

Dinasmom

Thanks for sharing your experience with sleeping pills. I had not thought of them causing dependence. I guess I was so desperate to get some sleep.

I will certainly keep that in mind.

Thanks again.

Linda

[Esnofla]

Try the time release melatonin.

[Twojer in reply to Esnofla]

Esnofla

I will try the time release. I have used the regular but still kept waking up in the early morning so stopped taking it.

Although my sleep issues have been going on fir a while, I think all this worry about covid doesn’t help. My sister died a horrible death from it in July after being on a ventilator for almost a month.

Linda

[Dinasmom in reply to Twojer]

I'm a RN. Should have known better. When I was so desperate for sleep that I took TWO of them, and it still didn't work, I knew I had to stop and went cold turkey. I still have some problems with sleep, I read it's part of PBC, but I'm sleeping better now than I did WITH them. Good luck!

[Twojer in reply to Dinasmom]

Thanks Dinasmom

I know that feeling of taking 2 over the counter aids and even that didn’t do it. I think some of them tell you to take a break from them after a period of time.

However none of them worked well enough for me. to keep with them long enough to take a break. LOL

Linda

[5454]

Try zertex or benedryl sounds strange but might help has helped me with CLL also keeps sinus headache down. Zertex says might cause drowsiness so I take in evening. Just throwing that out there 💪

[Twojer in reply to 5454]

5454

Thanks for telling me what has helped. I’ve tried Benadryl but it didn’t help me for some reason. I will look into Zertex though. Do you take these regularly or just once in a while?

What is CLL if you don’t mind me asking?

Linda

[5454 in reply to Twojer]

CLL is chronic lymphocytic leukemia. I take Zyrtec every day benadryl made me nervous but Zyrtec ok also use Olly sleep melatonin L Theanine & botanicals as needed maybe it will help I believe that lower doses of melatonin works best long term I use one but two is the norm hope you get some relief insomnia stinks plus our bodies need to heal best wishes ✌️

[Twojer in reply to 5454]

I will look into Zyrtec. However it happened thank you for responding. I will say a prayer for you. Thanks again.

[5454]

Pbc looked it up must have jumped categories. Best wishes regardless God bless.🙏

[Hidden]

I don’t have any suggestions just wanted you to know you aren’t alone. Most nights I sleep well from about 11 pm until 1am, always need the loo around then and afterwards I’m awake for 2/3 hours, and then wake regularly for the few hours I have left in bed. I have to get up at 7am at the latest as I have a toddler so there’s never chance of a lie in, unfortunately this amount of sleep is not enough for me! I will read your other comments with interest x

[Twojer in reply to Hidden]

Rosemadder9

I woke up this morning at 2 after 3 hours sleep. Several people have made suggestions and I am looking into those one by one.

No

I have tried regular melatonin but I am still waking up in the early hours. I have ordered the time release but it has not come in yet. Some other suggestions are more exercise during the day, Zyrtec, relaxation/sleep music hypnosis like is on YouTube. Someone had mentioned a possible sugar drop might be happening in the early morning. I have had my glucose checked and it is normal although diabetes runs in my family. I do not take naps either.

I have an identical twin sister who gets 7-8 hours sleep EVERY NIGHT. She does not have PBC though. She does not take any type of medicine for sleep and does not exercise.

I will let you know if something starts working.

[mtrafter]

Have you tried Super Magnesium powder? I found it quite helpful when I was going through a period of disturbed sleep. Seemed to relax me more, I still woke at3am for bathroom stop but was able to get back to sleep more readily. The powder is more effective than tablets or capsules not sure why.

Good Luck

[Twojer in reply to mtrafter]

Mtrafter

No I haven’t tried the Super Magnesium powder. Have tried the Magnesium capsules. Does the container say how much to take?

[mtrafter in reply to Twojer]

Hi sorry about the delay.

Directions 2 scoops (5g) in 250 mls water,/ juice. I took it 1/2 hr before bed. Added bonus it can also help cramps and restless legs. Hope it helps its hard to function well without good sleep.

[Marysla]

Hi ,I take amytriptyline because I also have fibromyalgia .

It is really good for sleep too.

[mrspeffer2]

Good morning...this whole not sleeping thing is terrible! Last year I started developing leg cramps at night, so of course I started researching supplements. Not sleeping was bad enough, but adding in cramps made it impossible to get any sleep. I found a product called MAG R&R. It is magnesium glycinate plus Rhodiola rose, ashwaganda, fit B6, 5-HTP, GABA, passion flower and melatonin. I take the recommended 3 caps about 40 minutes before i want to go to bed. Good sleep, no cramps. I seem to wake up after 6-7 hours these days, but I'll take it. I have also recommended it to several friends who had positive results. Found it on Amazon. I use it everyday. Be well

[Twojer in reply to mrspeffer2]

Mrspeffer2

I will check MagR&R out. Yes 6-7 hours would be wonderful!

I have leg cramps sometimes also. I found something called Hyland’s Leg Cramps. It worked great for me usually within minutes. I dont know if you can take the Mag R&R in the daytime but I thought I would pass the Hyland’s info along. I also have used 1/2 cup of tonic water with quinine if I didn’t have any Hyland’s on hand for leg or hand cramps.

Thanks for telling me about MagR&R.

[mrspeffer2 in reply to Twojer]

The makers of Mag R&R make a daytime formula too. so far, I haven't experienced daytime cramps. Be well

[mrspeffer2]

My mom used to have leg cramps and was prescribed quinine tablets for years. I truly believe she was undiagnosed PBC. Her LFT's were always high and in the end, her Albumin was very low. Funny the things we remember, right! Am I correct that Hyland's is a homeopathic brand? Think I've used their sinus formula before.

[Twojer in reply to mrspeffer2]

Mrspeffer2

Yes Hyland’s is a homeopathic brand. I have had good luck with it even with hand cramps. I take it with me when I am traveling which now is practically never.

Talking about your mom—you may be right. I have an identical twin sister and whenever she has a blood test I ask her how her liver enzymes are. So far they have been normal. I try to take the smallest amount of the tonic water with quinine. It takes longer to work than the Hyland’s.

Of course as with anything over the counter it is good to check on the internet as well as your doctor before trying something to make sure there are no issues.

[Texasliz in reply to Twojer]

I keep tonic water beside my bed. If I awake with leg cramps, I drink several sips and cramps leave instantly. I'm thankful to have found something that works, and is safe for me to take.

[Twojer in reply to Texasliz]

I know what you mean. That seems to work for hand cramps also. Cramps are such a sudden anxiety-producing pain and it is so good to have something that works quickly.

[Roz49]

Lavender and chamomile pillow spray works for me, there are other combinations give aromatherapy a try

[Greeenbean]

I'm so sorry about your sister. Such a difficult time. Thank you for asking about sleep issues. I'm not getting much from my doc, so your anecdotal research is helpful.

[sewing2020]

I take 2 acetaminophen pm/generic Tylenol pm. I discussed it with my Hepatologist and she said it was ok as long as I didn't take more. It helps me sleep and with my body pain.