Sleep torture

I'm on 30mg of pred right now. My sleep is... a total nightmare. I can't get more than 4 hours a night no matter what I do, and I can't seem to nap during the day. It's starting to affect my mental health.

I do most of my eating and drinking during the day. I have maybe 3-4 BMs during the day, but the majority of my BMs come at night. If I go to bed at midnight, I wake up at 4am like clockwork to have a BM. Then I try to go back to sleep, but 30 minutes later another BM comes.

A lot of UCers have really active bowels in the morning, but it's AFTER they sleep. For me it's always during the middle of the night. I've tried fasting and then not eating until the afternoon or even early evening, so that maybe it pushes ahead the BM time to 8-9am. But fasting is really bad for me while on pred, I get really starving and low blood sugar.

Obviously my UC is not under control. I've had significant improvement (from 20 BMs to now 6-7 in 24 hours), but this sleep thing is ruining me. It's now been 2 weeks of only 4 hours per night and my mental health is declining along with my cognitive function.

My doctor wanted to give me sleeping pills but I don't think that's the solution. The BMs will wake me up regardless. I thought maybe I should just take loperamide before bed but I really hate that stuff.

Does anyone have some suggestions? Please don't ask me about other UC meds, I don't take any because they don't work, and my GI is not helpful right now. I'm specifically asking about sleep. Thank you!

what is your activity level ? are you able to get out and exercise ? staying hydrated ?

obviously, even if you do everything "right", pred makes it tough -

pot ?

TT

This will sound counterintuitive, but my last go round with pred I had to go up to 60 mg to get relief, but it seemed to wear off and I was waking up in the middle of the night. Then I changed to split dosing -- half in the morning and half 12 hours later. Even though the 2nd dose was in the evening I slept better because I wasn't waking up to use the toilet. May not work for you (or anyone else lol), but split dosing made a world of difference for me.

When I was on high doses of pred I pretty much didn't expect a lot of sleep and just slept when I could. I did find that the busier I kept myself during the day the better I slept at night. I also drank a LOT of water to help with pred side effects. I know when you are on pred this is very hard to do, but try to relax and find humor in life as much as possible. Pred plays head games with us so we have to make a real effort to stay sane. I agree with notso -- you may need a higher dose of pred. But give split dosing a try and see how you do. If it makes sleeping worse for you go back to single dosing.

Thanks for all the suggestions! And for covering so much ground. Yes, I am well hydrated, and I get physical activity during the day. I do yoga and go for long walks. I get my groceries on foot so that I have a heavy backpack and full grocery bags in each hand when I walk home. I'm regaining a lot of weight and some muscle mass.

Unfortunately, when I go up to 60mg of pred, I start to suffer kidney problems and insulin resistance problems. 40mg is safely tolerated.

The split-dose suggestion is interesting because I already do that. I split my pred dose because if I only do morning doses, then I have more BMs in the middle of the night than I already do because of the sudden cortisol drop (low cortisol causes diarrhea). Of the 40mg, I take 30mg in the morning and 10mg in the evening. When I start to taper, I always take from the evening dose first, then the morning dose.

On the other hand, my transit time is exactly 12 hours from when a piece of food enters my mouth. This has been the case ever since I developed pancolitis and SIBO-D. So if I eat something at 1pm, it comes out at 1am. The only way around the sleep thing, I think, is to not eat from noon until 6-7pm so that I'm not having BMs in the middle of the night from midnight-7am. But then I'm eating super at 7pm which is pretty late. That, and the high pred dose makes me starving all the time and doing intermittent fasting in the most active part of the day would be really hard for me. Unlike others who gain weight on pred, I lose it!

The only alternative I can think of is to take immodium before bed and hope for the best, but the stuff seems so unhealthy. To be clear, I don't have any bleeding and my stools are soft but semi-formed. My CRP is 3. The problem is that my bowel is still healing from the flare so food passes through the colon pretty quickly still. So maybe I could get away with immodium.

I'm reluctant to take melatonin or another sleep aid because the problem doesn't seem to be sleep itself, but sleep being interrupted by BMs. When I go to sleep at 11pm or midnight, I'm actually tired and pass out right away... but then I wake up with all the nightly BMs and I'm wide awake. I don't think pred is what's keeping me awake. I'm worried that if I take sleep aids, I will either crap the bed or I will still wake up in the middle of the night to have BMs but I will be suffering because the sleeping pills will be making me a total zombie!

This disease sucks. I NEED TO SLEEP! Today I left a pot of boiling water on the stove and it completely evaporated, triggering the smoke detector and burning the pot. I left the bathroom sink running after brushing my teeth, and it stayed running until my partner came home and noticed it while I was gone out. The lack of sleep is making me batty!

Post Edited (VanJordan) : 5/7/2021 9:46:26 PM (GMT-6)

Welp, it's 4:30am and here I am, wide awake. This time I took immodium before bed, so I'm not even waking up to have a BM. I was so tired at 11pm that I couldn't even maintain a conversation with my partner and I was told to "Just go to bed already!"

Exactly 4.5 hours per night. For 2 weeks now. I just don't know what to do.

Have you tried going to bed earlier?

mindoverbutter said...
Hey, I’m finishing up my pred taper right now “med free” meaning I entered remission with lifestyle as my maintenance medication... here’s what worked for me. When the flare was bad I too had the same bowel habits as you, morning and middle of the night

0. Vitamin D 5,000 IU 2x day to calm inflammation

1. Had my pcp prescribe a benzodiazepine only while on prednisone. Ativan 0.5mg as needed. Life safer. No racing thoughts and can feel calm when I go to bed.

2. CBD before bed, or with your last meal. I found “healthy” gummies to work well, as well as suppositories, knock me right out. CBN is apparently healthy for sleep, worked ok for me.

3. Last meal by 8pm.

4. Light yoga and some light caring abdomen massage before you get into bed Whisper to your belly and set an intention that will sleep soundly with no dream poopies.

5. Meditation, try Headspace, or there is a really lovely sleep meditation On YouTube that always knocks me out.

6. Probiotic veggies during the day with meals. I’ve found health food store sauerkraut more beneficial than any probiotic pill bottle. Definitely aided in my healing and helped reduce bowel movements at night.

7. WimHof technique, cold showers and breathing exercises may help you reduce inflammation and improve your mood on pred. Careful though, the cold showers made me a little toooo excited while on pred, so I’ll take a half an ativan after if needed. No sense in suffering.

8. I ordered this product called GLR-6 from a company called Intestinal Fortitude. It’s a combination of intestinal healing herbs. They recommend taking 1 at night and working your way up to 4. I made it to two and I am extremely satisfied there.

9. Lemon balm tea or some type or organic Sleepy tea, ingredients like valerian, lavender and peppermint are soothing for your belly. Could help you relax before you get to bed.

10. Stay positive and continue to give yourself as much love as you possibly can.

Just to reiterate, it doesn't seem like night time BMs are my problem. My CRP is in normal range right now and I don't have major inflammation or bleeding. Body weight is normal again. The protocols I'm on seem to have taken care of that. I've reduced prednisone to 30mg (from 40mg) and will go lower in the coming weeks, taking from my evening doses. I think I have some dietary stuff to consider before I can do that, but on the whole I strongly suspect it's the pred doing this to me. Usually by week 6 of being on pred I start getting the side effects like moon face, which I still have. So I think sleep is part of that -- at least I hope it's the pred causing sleep issues!

Thanks for the long list of suggestions to consider. I won't do benzos, I already get enough vitamin D. I meditate daily (sometimes twice), do yoga. I don't generally exercise before bedtime, even if it's gentle yoga. Body work wakes me right up. Probiotic ferments, check! Herbal teas don't work but I do love them.

You're reminding me about not eating close to bedtime, and trying CBD. CBD often makes me sleepy and keeps me asleep, although I don't necessarily get deep sleep while on it and can wake up groggy.

Yesterday I did not eat between noon and 5pm, not by choice but because I wasn't home in time to have a meal, so I had a late dinner. I still woke up at 4:30am, even though I didn't need to have a BM. It doesn't seem to be BM related. In previous flares, I'd wake up to have a BM and pass right out when I got back to bed. Something else is going on.

I'm going to try CBD again even though I don't really like it.

lol

You aren’t the only one with complaints about ambling. This has been going on for years now. How about a few of us get together and send emails to the admin?

ambling said...
Another attack on me coffee mate, that’s about 100 now. Other than that you attack the moderators. Do you ever actually contribute anything?
And van Jordan, this is not your private forum, last I heard.

And this is not your private forum either. Be respectful

mindoverbutter said...

Hey allow me to clarify. No doubt I needed the prednisone to stop the flare, but as opposed to starting a biologic when you taper to a low dose of pred and symptoms might return, instead I have been using lifestyle to do so. And I have zero symptoms. I actually see symptoms improve when I taper. Let me know if you have other questions and how else I can help...

It's a little bit off topic for this thread but generally people only start biologics during a pred taper if prednisone alone wasn't enough to put them in a lasting remission.

VJ I am sorry for your situation, I don't think I have any new advice than what's already been suggested. When i had insomnia issues from prednisone my therapist at the time told me to just lie in bed and recognise that I'm still resting myself (even though I'm awake).

Last night I figured out the magic formula. I took 10mg of liquid melatonin, which is a lot for me. I also took a CBD capsule, and ate some light carbs. I slept for 7 hours. Still not enough, but way better than 4 hours. I feel so much more normal today! Now if I can keep this up.

However, this morning I'm reading that melatonin should not be taken with prednisone because it can render it ineffective. Has anyone heard of such a thing?

But I also just learned that prednisone reduces melatonin production in the body -- so maybe this is why I've had such trouble sleeping!!

https://pubmed.ncbi.nlm.nih.gov/29061489/