i have been on nocturnal for 6 months and dont feel different i never sleep while on the machine so for 8 hours i am up i normally start at 10 and get off at 6 then i finally get to sleep at 630 some times by 530 then i normally get up by 1130. was wonder is this bad. looking for suggestions
We’re you on in-centre hemo before? If so, how did you do on that, in comparison? Many people with ESRD find it hard to sleep, no matter what kind of dialysis they are on. It seems to be part of the overal restless syndrome (I don’t call it restless legs syndrome, because it really doesn’t just affect the legs). Many people have been helped by a small dose of clonazepam or similar drugs. Unfortunately, especially if you dialyze alone, you probably would not want to use any kind of medication that aids sleep, because you don’t want to sleep right through any alarms. On the other hand, if you have a partner, maybe the partner could be responsible for waking up. You should discuss this problem with your doctor.
Do you drink anything with caffeine later in the day. If so, don’t.
Is it that you worry about something going wrong with the treatment? If so, what is it that worries you exactly? Maybe we can help you with that.
Do you have frequent alarms during the night? That would make it hard for anyone to sleep, for sure. Sometimes it can be dealt with by eliminating the problem. However, I know some people just don’t have a stable enough fistula for nocturnal hemo.
If you still can’t sleep after 6 months, maybe nocturnal hemo is not for you. There are distinct advantages to nocturnal hemo, but if you truly can’t sleep, then perhaps short daily hemo would be a better option. It’s better than 3 times per week hemo too, and you don’t have to sleep through it.
When I was dialyzing in-centre, I always found I wanted to sleep through it anyway, but, everyone is different. On nocturnal, I usually sleep pretty well, but there are occasional nights when I don’t. I just take that as part of the package, and I sleep in after the treatment is over. But if it was a constant problem, day after day, and month after month, I think I would just switch to short daily.
We can help a little here, but it’s important to discuss this problem with your nephrologist.
Pierre
You should feel alot better. Is it the lack of sleep that is causing you not to feel any different. I agree with Pierre you need to determine why your not sleeping and see if the problem can be corrected. Is it worry or alarms? I have taken excedrin PM at bedtime before and still heard the alarms. But I wouldn’t do this if I didn’t have a backup. My father and mother are both in the house to wake me and we are monitored so I would also get a call if I didn’t respond to the alarm.
Dang, but umm…I can’t sleep well either with Daily-Short…the first several hours…sometimes can’t even sleep all night…this is every evening after doing dialysis, but maybe there’s a link to it as this wasn’t common before…maybe eating/snaks on dialysis and metobolsim? Hmm, only way is look into it…try some treatments without taking any food or drinks and try other treatments with snaks and see what results you get…
Terry
You labelled your topic “stress”, so I take it that is why you can’t sleep. I had the same problem but thanks to these guys here I am finally managing to relax a bit and trust the machine. After 4 months of "intensive "research 
my findings are…
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Don’t eat a big meal at night, just have a snack, eat your main meal at lunch.
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For me sleeping is never going to be as comfortable as before as movement is restricted and my hand cramps.
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Tape as securely as possible to prevent mishaps. I find a mesh stocking is like my security blanket (Pierre doesn’t agree with that)
4)Covering machine lights once pressures have settled helps me relax
5)I tend to wake up after a few hours and if I start to feel I won’t get back to sleep I play a Relaxation CD on my Walkman or if I am feeling very wired I have resorted on a couple of occasions to half a sleeping pill.
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If I feel I am starting to climb the walls keeping still or feel too “wired” I get up and go to the bathroom and /or have a walk around house and usually then can sleep well
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Do as much exercise during the day, this will make you feel better psychologically and physically as well as help tp wear you out!
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Don’t let the machine and dialysis rule your life. (I put Freni away when not in use and get on with my life)
9)At present I only do 3 nights and 1 day run of 4 to 5 hours per week. my blood tests are great, no fluid or diet restrictions yet. This gives me 4 nights per week off, have you thought of doing a combination?
- Make sure you make an effort to keep up or make new social contacts. People need other people to give their life meaning.
As I said I am finally learning to trust “Freni”. I wouldn’t want to get into the habit of missing half the day as well having to sleep on too long after Nocturnal, you are effectively spending most of your life in bed and I feel life is too precious to be wasted if you can help it. As Pierre says maybe Short Daily is the answer if you can’t relax.
Cheers 8)
Hi Beachy
It’s not that I don’t agree with a mesh sleeve or stocking. I’m assuming this is or similar to burn net. If a person can find a way for that not to tamp down the needles too much and cause frequent alarms, I’m all for the extra security.
By tamping down, I mean that the downward pressure on the needles from the mesh pushes the tip of the needle up against the top of the vein. This is bound to cause frequent pressure changes as you move your arm, and it often also causes the fistula to spasm, causing further pressure problems and perhaps TMP alarms as well. I just don’t see how that would work for most people. I was dialyzing in-centre long enough to see how even just covering one’s arm with the end of a blanket affects venous and arterial pressures. But if it works for you, great.
I agree completely with your suggestion to avoid large meals in the hours before dialysis. I have the same problem. I try to make my main meal the midday one too.
Pierre
Hi Pierre
I agree entirely if the “stocking” is too tight. I have around 8 of them and have now narrowed it down to those that make me feel secure, offer some support but aren’t tight enough to cause pressure problems. 8)
Pierre writes:
I agree completely with your suggestion to avoid large meals in the hours before dialysis. I have the same problem. I try to make my main meal the midday one too.
Were you always able to eat your main meal earlier in the day before starting nocturnal txs? Because with in-center txs, I have a good appetite for breakfast the day after dialysis, but I do not build up an appetite for my main meal until the late afternoon or early evening. Inbetween I only feel hungry for some fruit or I may make a smoothie with egg white powder for protein. This way, I have a decent appetite for supper later in the day. But if I eat a fuller meal at lunch, it totally knocks out my appetite for supper. And like I said, I’m not hungry at lunchtime anyway. So, I wonder if in the way your appetite improves with nocturnal, it also causes you to feel fully hungry much earlier in the day so you can enjoy your main meal then? And what, if anything do you snack on/drink on the machine or are you fully ready for bed then?
I’m hungry for a big breakfast after I get off in the morning. If I eat it, I’m not as hungry for a big lunch as I would be, but I eat something (you simply can’t eat enough protein if you don’t have some each meal), and I may wait and have an early supper around mid-afternoon. If I eat a big meal at suppertime, I may have some heartburn later, even though I take pantoloc every day for GERD.
While I have eaten before or on dialysis in-centre and at home, I try to avoid it if I can, because for me, with my GERD, it’s a prescription for heartburn and reflux. Seven hours on dialysis overnight can be a long time if you have heartburn all night!
I have coffee before treatment, if I’m feeling a little drowsy while I’m setting things up. Other than that, I only drink water during treatment. I don’t eat. I would for a short daily, but not for a nocturnal.
This is a problem I had in-centre too, so it’s not new, and probably not applicable to everybody. I’m very careful about this, because I also have asthma, and reflux seems to make it worse.
Pierre
What do others do on nocturnal txs to ward off boredom or discomfort when you have times that you can’t sleep well? I’m sure the tradeoff of having all daytime hrs free will be wonderful. But when you feel restrained in bed what do you do?
TV with digital cable box and movies, and headphones long enough to go from TV to me! 
Pierre
Sleep apnea is a common problem with people with kidney failure. Have any of those of you that report sleep problems had a formal sleep study?
Beth
On the nights I am not on Nocturnal I sleep like a baby! After dealing with the need to frequently go to the “loo” overnight for the past 13 years of kidney disease pre dialysis, it is an absolute pleasure to wake in the morning without one interruption during the night. 8)