BAD INSOMNIA!!

[Redbone55]

Good morning everyone!!

Another bad night for me, I am about 14 months post transplant and I was wondering does anyone have the same experience that I am having, which is having trouble/issues falling to sleep at night. I went for a sleep study last week and I am just waiting for the results. It’s getting hard to somewhat feel good because in the morning I am so tired and fatigued, it’s almost starting to feel like my new normal. Any suggestions!!

[Alfredmynewkidney]

Hopefully your sleep study will give you some answers. I get insomnia too. But I work 3rd shift so that sure doesn't help. I do take magnesium before bed and occasionally a sleeping pill. I'm almost 2 years post transplant. Here's hoping we both get some good sleep soon!

[Redbone55 in reply to Alfredmynewkidney]

Yes hopefully the sleep study will give me some answers, are used to work third shift as well and I know it’s not easy. Like you said I hope we both get some amazing sleep SOON!! Stay safe and healthy!!

[Senior67]

Have you tried melatonin? That use to help some but then my doctor put me on 10mg of Ambien which works wonderful and I have had no side effects or morning hangover. I don’t know if you can take it but you might ask. I take gabapentin and Tramadol too and have no problems with any of them. My doctor said Tramadol was better on your liver than Tylenol. Tylenol kills a lot of people yearly because of damage to the liver. Tramadol won’t kill a person as long as they take the prescribed dose.

[Redbone55 in reply to Senior67]

Yes I have tried melatonin but it does not work for me, are used to take Ambien you a girl or maybe I should try that again. Thanks for the suggestion please stay safe and healthy! 😊

[PhoebeElmgrove]

I had the same issue but it was one of the medication ( cellpat). As soon I substituted it, no more insomnia for me.

[Redbone55 in reply to PhoebeElmgrove]

Yes this is definitely an issue to bring up to my transplant team. I am on Cellcept, so we’ll see. Stay safe and healthy! 😊

[Eyak1971]

Ever try meditation? I only have trouble sleeping when I can not shut down my mind. But as others have suggested check side effects of your medication. Good luck and take care.

[Redbone55 in reply to Eyak1971]

No I have not tried meditation,? Maybe I should. Thanks for the suggestion! 😊

[Eyak1971 in reply to Redbone55]

Whatever you try that works let us know. My daughter has the same problem and has not really found an answer. She has MS.

[Redbone55 in reply to Eyak1971]

OK I will keep you posted!! Blessings 🙏

[Sassyansweet]

I don’t have trouble falling asleep but sleeping more then 5 hours is something that I have issues with . tacrolimus I was told can cause sleeping issues. Talked to my transplant dr about it yesterday.

[Redbone55 in reply to Sassyansweet]

Thanks for your input. I wish I could sleep at least 5 hours!! 😊 stay healthy

[Sassyansweet in reply to Redbone55]

5 hours is rare it was 3 last night 3 1/2 the night before

[Redbone55 in reply to Sassyansweet]

Now I can relate better to those hours!! 😑 it just seems like my new normal

[Sassyansweet in reply to Redbone55]

Mine to and I hate it. But I love my kidney and not being on dialysis ,so I will take no sleep vs being sick all the time.

[Redbone55 in reply to Sassyansweet]

YEEESSSS!!! AMEN!!! 🙏

[Oceansideup]

Sorry you are having sleep problems. You are doing the right thing by getting the sleep study done. It will provide some direction and that will help. When I can’t sleep, I use various YouTube guided sleep meditations that are 8 hours long. It helps me to have a gentle voice to follow so I can relax and let go of the day. There are tons to choose from. Best of luck to you!

[Redbone55 in reply to Oceansideup]

Thank you I have not gotten the results of the sleep study yet. Meditation does sound good 😊

[ILMA54]

I got a transplant last July. Early on, I had trouble staying asleep. I woke up at 3 AM every morning. Some of that may be that I was on a higher dose of tacrolimus, but I don't think it had much to do with prednisone because in the spring of last year, i contracted a rare auto-immune disease, and they put me on 40 mg a day with an eventual taper to 10 mg, and that did not affect my sleep.

What I also noticed was that post-transplant, the dexmethylphenidate I take for attention issues seemed to be working overtime. For the first 5 weeks post transplant, I stayed off it since I was not working. The minute I started back on it, I was awaking again at 3AM. I took the short acting version of that drug, and it helped with sleep, but was terrible for attention/concentration.

Also, as my tacrolimus dose has been lowered, I have had minimal issues. I take 1 mg 2x/day.

Finally, I was using a CPAP prior to my transplant, and that seemed to address some of the sleeping issues I was having. I had a mild form of sleep apnea (9 events per night), but because of my compromised kidney function, they had me start just to hopefully slow down the decline in kidney function.

Hope that helps.

[Redbone55 in reply to ILMA54]

Thank you for your input, please stay safe and healthy

[HughL]

I had same problem. Dr said it was likely the prograf. I went to other dr and got sleep meds,, after some trial and error found the right combo.

[Redbone55 in reply to HughL]

Thank you for your suggestion!! 😊