Hubby is having trouble sleeping on nocturnal. He is tired a lot of the time lately because of this. He is also having problems with anxiety and I think a lot of it is because he doesn’t sleep good. He is going to try short daily for a while. Probably do 3.5 hours 6 days a week and see how that works. Anybody else have trouble sleeping on nocturnal??
How long has your husband been trying nocturnal? My father who is the patient has never had trouble sleeping on nocturnal. I as the caregiver had an adjustment period to go through. It took me anywhere from 2 weeks to a month to believe that dialysis was really happening while I wasn’t watching and nothing was going wrong. Once I accepted the reality I never had trouble sleeping again.
Has been on since Oct. almost 4 months now. Some nights he will sleep pretty good . Other nights he doesn’t get any sleep. He is going to try SDD for a while now.
try benadril iv. ask your dr. it will put him out.
Hi Delphine… let me try to return a favour … here’s what I found at
nocturnaldialysis.org in the “FAQ section” of this great site… hope it helps
“Can you tell me if people have any problems getting to sleep while on a machine during the night?”
Interestingly, this is an often unspoken but chief concern of many patients.
The answer is a complex one. It includes an understanding of and the solutions to perceptions … though not necessarily realities … of:
• anxiety
• fear
• chemical sleep
• sounds and lights
• partner disturbance
• physical discomfort
• trust (or distrust) in equipment and connections
• machine alarms
Sorry !! the answer was a bit long but I’m sure it’s all their for you at
that site… Richard C / O Jessie
Trazadone works for me.
Does it make you feel “hung over” the next day?
No. My script is for up to two 50 mg tablets. I usually take 1/2 tablet or only one each night. The only problem I find is when I’m up late and need to get up early the next morning. In this case even though it is late I still need it to sleep but I’ve cut my sleep time down so I’m a bit grogging in the morning. We have an automatic coffee maker that goes off before I get up - the smell helps counteract my grogginess - so does my three-year old coming into my room asking to watch Mickey Mouse.
However, when I set enough time aside to sleep I wake up refreshed. Ambien just didn’t work for me.
When I first was on NxStage last spring and summer I stopped using trazadone for awhile. I think I was so active that my body was actually tired enough to fall asleep. However, when fall rolled around and my son went back to school I seemed to slow my activity level and have been back to using trazadone as mentioned above.
Since I switched to NxStage I’ve cut back on most medication which something I feel very good about. Trazadone seems to be one medication that helps me to have a better life with minimal if any side effects.
Erich
Hi Delphine
If you read back over the past year and a bit of posts you will notice there has been quite a few mentioning lack of sleep and many of them come from me!
I still hate the fact that I don’t sleep well and wake up feeling tired most days. Combination of many things for me…being tied to a machine ,not being able to wriggle around to get the most comfy position as much as I would wish, noises, feeling alert in the early hours, stressed,nervous at times etc etc. Not enough to make me want to take a pill most times but enough to take a break from Nocturnal for a few nights now and then. Doing Nocturnal is not my idea of a great night in the sack but it is definitely worth perservering with.
As jessie says Agar does mention some of these factors briefly but I am sure he would understand even more if it was him tied to a Freni.
Cheers
Beachy sounds like you feel like Hubby says he feels. He is taking a break and doing short daily now but he is hoping to try nocturnal again. I wish you could do a combo of both. A few nocturnal nights mixed in with a few short treatments. Maybe you can. We have to talk to the neph and Hubby’s dialysis nurse. Bloodwork was good with short daily xcept for the phos and I really think that was a mistake at the lab. It is no fun being tired all the time. Every yyear around this time(it is winter here) Hubby gets a “little bit” anxiety. Maybe went the weather gets better he will try nocturnal again. He doesn’t like taking pills to make him sleep. A lot of them make him dopey the next day.
Hi again Delphine
Taking a break from Nocturnal will be great for both of you. Out here in Aussieland we are welcome to “mix and match” our dialysis to suit our lifestyles. I have just talked to my neph recently about doing less Nocturnal runs in a week and a few more shorts for a while. It is soo hot here at the moment and the nights are a real trial sometimes. Obviously I change the dialysate flow rate on short runs and increase the blood pump speed but I have never gone above 320ml/min on the Freni. That was the reason I decided to go with Nocturnal in the first place, as the slower pump speed is easier on the heart (besides that being a girl I didn’t really fancy a huge fistula from large amounts of blood being whooshed around )
Good luck with it all (:
HI Beachy,
I didn’t know you could change your dialysate flow rate. Do you do that yourself on the fresenious machine or get the technicians to do it. We have a fresenius 4008. I know the flow rate can be changed up to 500. But, we never have changed it. Not sure what it is currently at but I am going to ask the technician…
cheers Queenie.
Hi Queenie
Nice to see you back posting here again (;
My dialysate rate is set at 300 ml for Nocturnal so it doesn’t run out overnight so I guess yours is too. I change it manually to 500 for my shorter runs to get more “bang for your buck”. I go to the select button, find 7.6 Dialysate Flow,confirm ,it shows me set flow rate of 300, press up arrow to change it to 500, confirm that. It resets itself back to 300 after that treatment.
Hope you are looking after yourself.
Cheers
We use 300 flow on nocturnal but change it to 500 on short daily. It is very easy to do. We also change the pump speed . On nocturnal hubby runs 250 pump speed but short daily pump speed is 400. If you don’t do this you will not get a good dialysis. Our dialysis nurse(the one that trained us ) was on vacation when we changed to short daily. We changed all this stuff on our own because hubby just couldn’t handle nocturnal for a while. When she got back and I called her. I told her that we had changed to short daily she started to tell me the things we had to change. Everything she said I said we had done it. She was really surprised but hubby has been on hemo for 6.5 years now and always took an active role in his treatments.
I am on nocturnal also but unable to sleep due to anxiety…I have been on dialysis for 6 months now and I am doing dayly for now. Once I conquer my anxiety I will give a shot to sleeping attached to the machine…
You say that you’re too anxious right now to dialyze while sleeping. Have you been able to identify those things that worry you? If you share them, maybe others can tell you how they were able to overcome those concerns.
Thanks for the question…I guess the biggest obstacle is me. I am an aprehensive guy and EVERYTHING worries me. Now if I want to list the things that stops me from doing nocturnal…here they are:
- Fear of damaging my fistula because of involuntary movement during sleep (and I know that the tape and the wet detector will prevent this from happening).
- Moving my arm in a position that will damage or hurt me. I have an upper arm fistula and one of the neeedles goes almost where I bend my arm.
- Moving and causing alarms …
As I said…I am probably the main part of the problem…I have aniety even when I am not on dialysis…
Hey Jedimaster
They are all real fears you have (whether unfounded or not) I know how you feel. After 18 months or so doing Nocturnal I still am aware I have to move my arm carefully. I have the needles in the lower arm taped and covered with a lightly elasticized sleeve. This gives me some peace of mind but if I roll over too roughly it does create alarms and the old stress levels go up again. I place my left arm (with the needles) across my body if I want to sleep on my right side and prop my arm up on a small pillow. That helps , but I seem to need to rotate myself all night every hour or two so it is never a restful sleep and I am often wakeful. I just look forward to the mornings.
All the best.
Thank you for understanding!..what I am doing now is trying to sleep one houror so during dialysis to get used to the idea…maybe one day I will conquer my fears. Dr. Bombay, my nephrologyst, tells me to take it easy…so i am… 
I have been doing nocturnal for over 6 years with dad and we sleep just as well on dialysis as off. Pat C. who also posts here has been doing nocturnal with her husband and they also sleep well. It takes a while. At first I was anxious about getting alarms, but now I sleep well knowing I can trust the machine will alarm if something needs tending too. Your plan of sleeping an hr or so and getting used to it will probably work. I didn’t get used to it until I had gotten so tired, I couldn’t stay awake. After a couple of nights of sleeping through the treatment, I realized my anxiety toward sleeping was unwarranted. I think it also helped that when we first came home we ran 6 nights a week so there was really no way to get around the sleep issue, except to conquer it. It’s not like I could get a night off to catch up on my sleep.