Hello Friends, Following my transplant in 2017, I have developed a rather big challenge in getting a full night's sleep. Very rarely can I pull off 7 hours. Mostly the average is less than 5 hours per night. I have read how this is a common challenge for transplant recipients. I also use a CPAP machine that kicks my butt most every night. This certainly adds complications.
Thoughts? Ideas. Thanks
Hi,
Sorry to hear you have this problem. Getting a good night's sleep is so important for a healthy body. The doctor also told me it could extend the life of the kidney transplant.
I tried a cpap machine but it didn't work for me; I would wake up in the middle of the night unable to breath because of the pressure. When I convinced the sleep clinic that it was a problem, they suggested a small mandibular advancement device (MAD) which brings the jaw forwards while sleeping and prevents the airways from closing. It looks a bit like a gum sheild and has a gap for breathing. Once I learned to breath through my nose, which was also a problem, it has solved my restlessness and I sleep well most nights now.
It might be worth asking your doctor if this might be suitable for you.
Hope this helps,
Best wishes,
Mgt
Have you tried Melatonin, it's completely natural, I use sublingual 1 mg, and have done so for many years, it is fast acting, get into bed, and dissolve it under the tongue, you must turn off the lights ! it's no good taking it and then try and fit in a few chores while you wait for it to work, it has a short window, so be prepared to sleep when you take it, light produces serotonin, which keeps you awake.
Hi Meggy619, I have tried melatonin. It gets me to sleep. It is awakening at night that is problematic. Getting back to sleep is the nightly challenge. Thank you for your support.
Just as a matter of interest, do you have wireless devices in your home, i.e. dect phones, Wi-Fi, smart meters, that sort of thing, I don't have any, because I am sensitive to the radiation, wireless disrupts the natural production of melatonin.
There's a melatonin product that allegedly absorbs over a seven hour period: RemFresh. It is suppose to keep one asleep for a longer period. It works for me some of the times. But, most times, when I wake up and cant get back to sleep, I just take another 1 mg of melatonin and read for a short while.
Good luck. Hope you find a solution
I'm almost sure my insomnia stems from the Metoprolol that I have to take at 4 pm which is known to dissolve whatever natural melatonin that one makes.
I am also 72 and am 23+ years post-transplant and still have issues with sleep. Sorry to tell you that. Have you tried Melatonin? It does work some for me. I need to take it 30 minutes before I plan to go to bed. I follow a routine every night. I read for 30 minutes before I turn out the light. My nephrologist has OK'd me to take "ZZZ Quill ultra." It is not habit forming and is over the counter. When I really need a good night's sleep I take ZZ Quill.
Best of luck!
Thank you for this suggestion. I will search out the product. Happy Holidays!
I'm almost sure ZZZQuill is Benadryl. You may want to read about the long term effects of this supplement. Years ago, it was my "go to" meds for sleep, but I was advised to stop taking it by my primary when new research came out about its use with the senior population.
FYI; ZZZQUILL isn't Benadryl. I take Benedryl when I have allergy problems.
From the Web: "ZzzQuil is an over-the-counter nighttime sleep aid. The active ingredient in ZzzQuil is diphenhydramine, which is also the active ingredient in the allergy medication Benadryl. Diphenhydramine is an antihistamine that people commonly use to treat allergic reactions, itchiness, and hives."Years ago, I worked at the University of Florida/Shands Medical Hospital and knew doctor/researchers there who were doing studies with Benadryl .it was they who advised me to stop using it. I was crushed because I relied on it faithfully as a sleep aid. So be it
Is doxylamine succinate the same as Benadryl?
Unisom is the trade name of Doxylamine succinate on the other hand Benadryl is the trade name of Diphenhydramine hydrochloride. Unisom treats allergies and used as a sleep aid, while Benadryl is used to treat allergies and hives. Unisom half-life is 2.4-9.3hrs; on the other hand, Benadryl half-life is 4.3 hrs.
It is definitely not something you should take every night. My post was I take it when I am desperate for a good nights sleep. ZZZQuil's active ingredient is doxylamine succinate, where as Benadryl is diphenhydramine. Neither should you take all the time. My neph said OK to take occasionally. Older people have a higher chance of developing dementia
Yes, this all seems true. And, onset of early dementia in seniors were what those researchers found with alot of those antihistamines
Please do not think I was bad-mouthing your use of ZZZquil. No one better than me knows what its like to suffer from insomnia. To get a decent nights sleep, I'd use it myself. I just wanted to share my experience with this wretched problem.
It just seems that whatever problem we try to solve with meds, theres always the strong possibility of another one waiting in the wings to crop up.
Ya, everything in moderation - whether it is Melatonin, Benadryl or ZZZQuil. Even not getting a good night sleep over time ups your chance of getting dementia. Makes me wonder what else can cause dementia. Immunosuppressants???
Probably. You know if you want to dance, you have to pay the piper. But, I'm kind of getting tired of solving one problem only to find I created another one. I guess it comes down to the lesser of two evils. Hope you had a great holiday. Best always...
has my transplant on 10-31-2020 and I can’t sleep either 3-4 hours a night is my usual. Nothing helps me melatonin makes me sleep an extra 30 minutes tops so it’s pointless for me. Best of luck to you .
Thank you very much. We share the same experience. I worry that I may be losing function in other areas as a result of this short sleep cycle. If I uncover a solution, I will share it. Best to you..
thank you , so far I am doing ok with sleeping like I am. No adverse health issues my kidney function is according to my dr “so good you can’t tell I ever has issues” , so hopefully you won’t encounter any health issues.
My sympathies—since my transplant Oct 2020, my sleep habits have completely changed. I easily go to sleep but then wake up and can’t go back to sleep, so often 3-5 hours/night. Then my body gets so exhausted I will have a big sleep night—up to 7 hours. It is amazing how well you feel the next day after sleep! My understanding is that tacrolimus can affect sleep, so I am hoping that as the tac is gradually reduced, my sleep will improve. I am taking 6mg/day.
Hi Erica. Yes, we share the same experience. the rare 7 hour sleep is truly a wonderful experience. Unfortunately, it is few and far between. My tacrolimus is 2mg. per day. I should be counting my blessings. I use a cpap machine that kicks me around nightly. That too is a factor. I am going to stay with this until I can find a window to get a little over 5 hours nightly. Thanks for your support.
Argh. Dont talk to me about sleep issues. I dont yet have a transplant (ckd 5 ), but i average 3-4 hours of sleep a night. When i do manage to get to sleep, i wake up again after an hour or 2. Ive tried everything, which works for a short time and then stops. I feel like the walking dead. Clearly i have no suggestions, but am glad it's not just me here suffering in the dead of the night. (Its 3a.m.) X
Dear Wheezoids-we are kindred walking zombified humans. Today is one of those days when the lack of sleep influences concentration and most everything else. If I find something that works I will share it with you. Together with droopy eye, your Pal!
I know the feeling too. I’m working on getting outside into daylight first thing for at least 15 minutes (without sunglasses) as research shows that that can help with disrupted sleep cycles. I also take melatonin to help me fall asleep, but not necessarily stay asleep. Blockout curtains have helped along with fresh air and keeping cooler at night. Work in progress!
Qhite noise,ear plugs,nothing sweet after 300pm
I will try the sweet abstinence. Thank you. It will be a major task however as sweets are my "go to". All thing must pass, correct? Thanks
i had sleep problems too and finally went to Dr and got sleep medication that pretty much solved my problems.
Hi Hugh, I will be seeing my doctor shortly. I have tried some trazodone. Mixed results, darn! Best to you. Thanks for the reply
Yes i find not just sweets but anything with sugar like fruits,juices.best thing that knocks me out into deep sleep spaghetti for supper.
Parkervarker-Thank you. Had some yummy spaghetti tonight. Hope it helps. Thank you for your sharing.
Maybe it's just me but if I lay my back on a heating pad for a few minutes before bed I feel like it helps me relax and sleep better, but I too have been having a lot of trouble sleeping since my transplant...
Hi PDK. I have PDK as well. My challenge is waking in the night. I use a CPAP device that treats me as "one of the usual suspects". Getting back to sleep is the big challenge. I do have a heating pad and will add it to my bag of tricks. Thank you. Happy Holidays!
Try taking magnesium glycinate before bed. This will help with relaxation. I usually take 200 mg every night and sleep at least 6 hours straight most nights. The bottle actually suggests 400 mg as a serving. (I don’t do the 400 because I just don’t feel like swallowing 4 capsules @ 100 mg each.) I don’t think you can take too much magnesium and most older adults are actually too low in this mineral. I’m never in the normal range when I have bloodwork done. I also take 400 mg of magnesium oxide during the day. Definitely look into increasing your magnesium. Hope this helps.
Have you tried Cognitive Behavioral Therapy? This has really helped me, although it has been more effective for me at getting to sleep rather than staying asleep, but I can usually fall back to sleep.
Silenor is low dose doxepin (3 to 6 mg) for sleep. It requires a prescription but is not habit forming. It is supposed to help keep you asleep and may be worth a try. There is a generic available.
Yep on CPAP also. I have found that the full face mask works better for me than just the nasal one. I do sleep better on CPAP. Sleep is the most important part of life for me. When depressed I couldn't sleep and that made things worse. Between restless leg medicine and anxiety medications I sleep good now. God Bless You!!!
I am 4.5yrs post transplant. Definitely lots of issues with sleep from the get go. Trouble falling asleep and staying asleep. Restless leg syndrome as well. All side effects from the meds. Sometimes I can't get to sleep until 5-6am. So will get maybe 4-5 hrs sleep a night. I was on PD dialysis before for up to 13 hrs a night so I was used to sleep issues. I took ambien most nights to get decent sleep and even then, 6-7hrs if I was lucky. Back then I had 0% kidney function left so I didn't care how many meds I took. I am now very cautious what extra meds in put into my body.
After my transplant, I was diagnosed with classic fibromyalgia, I had symptoms before but didn't bother getting it diagnosed then, didn't matter much in the big picture. These days, I might be so fatigued that I sleep all day. Or my eyes are really tired so unless I am super active focusing on doing something...the minute (slight exaggeration, like 5-15mins) I sit down to relax or take a break, I fall sleep.
So I either sleep too much or not enough! Fun.
On top of my fibro pain, in some very odd joints and areas...like the middle of the side of my foot...I was diagnosed with sciatica in 2019. Five beautiful bulging discs, in my neck, spine and lumbar. Was given a ton of steroids and gained 25 lbs 
that I still haven't managed to lose. Plus packed on an additional 10lbs in the last year due to lack of exercise from the pain on and off for months at a time. Never know when the pain and numbness will spike or where. Fibromyalgia and sciatica...double whammy. But wait there was more. Like it just wasn't enough...I also got shingles at the same time in 2019...and lucky me, am one of the few that kept the itchy symptom. Not as bad as when I had full blown shingles but it's still there more than 4 years later!
I am very grateful for my kidney (thank you to the 20 something that was an organ donor!) and I am VERY happy to be alive but man...having chronic pain is a bit of a downer! Although, I do prefer having these chronic pain issues rather than be dying and on dialysis any day of the week!
Long story longer...I started taking marijuana tinctures after all my chronic pain took its toll. SO many people use it effectively for pain relief and help with insomnia. Mostly CBD rich with very little THC. I usually take 30:1 ratio. No psychedelic effects at all since there is very little THC. While it didn't do as much for my pain as I hoped, it did help my brain stop churning and in turn, helps me relax. I mostly take it at night. And on the non fibro days, it does help me doze faster as I am more relaxed. For many people, it knocks them out and helps with pain. I also occassional use CBD rich balm for pain as well. Topicals do not have any effect on your medication.
Here's the great postive kicker...it raises the toxicity of tacrolimus so I actually have to take less tacro. I read about the use of CBD rich tinctures for transplant recipients on 2 different brief entries on a marijuana forum. Fortunately, my post transplant nurse had just returned from a seminar about using CBD for transplant patients so she was totally game for letting me be my own guinea pig. It worked. I lowered my tacro from 2 in the AM and 3 in the PM to 2mg and 2mg right away. I recently upped my tincture a bit and now I take 1 tacro in the AM and 2 in the PM to maintain the level my nurses want, which is usually around 6.5. I told my team, I'd much rather take more CBD to maintain my levels than more tacrolimus!
So if you live in an area where marijuana is legal, you might want to talk to your medical team and see if they are okay with you trying it. I only know about how it effects tacro for me. Not sure if you take the other medicine instead of tacro. By the way, edibles only. No vaping or smoking. It does not have any effect on my other immunosuppressant medications, like mycophenolate or prednisone.
CBD might help you with anxiety, sleep and pain. I loved that it stopped my thoughts from churning. I would also take some on days that I knew would be highly stressful for me. It worked then, too. That alone for me was worth it.
Hope this helps. Good luck!
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