Change in sleep patterns, anxiety, restless legs?

[CHeatherS]

Hi folks, I think I have been on PD for a week now.  I think the pain and healing is finally progressing from the surgery, and I am getting the ropes of the exchanges here at home.  But on my gosh, would I love a good night's sleep.  This last few years, I have slept so well, and better than all of my life.  I was wondering if it was from all of the creatinine in my brain, acting as a sedative.  Could that be?  But now, this last week, oh my goodness.  First of all I was getting heavy duty anxiety and leg and feet cramping, but think that was because I was dry, not drinking enough because I felt so danged FULL.  So I forced myself to drink a lot yesterday and that helped with the cramping, thanks God (I thought I would have a heart attack!).   So last night, I went to bed, thinking, no pain, lots of water, herbal teas.... this should be a GOOD night's sleep.  No way.  Anxiety, restlessness.  I tried controlling my breathing like you do in meditation, but NO WAY.  I finally put on my ipod and listen to music.... but that only calmed me down a bit, did not let me go to sleep. 

I have dropped all of my bp meds since I started this.  For some odd reason my PTH went down from 200 to 40 so I just dropped the zemplar as well.  I have never taken any drugs for anxiety.... but if I don't get some sleep tonight, I might die.  Anyone else with these issues?  Any suggestions?  I am thinking that exercise would help, after all of these years of laying around like a sick dog. 

Blessings to you all, thanks for any suggestions.

Heather

[billmoria]

   Hi Heather   nothing you write will be of much surprise to many on this board. I am in center 3 x 4 hours a week and I have suffered from many of the same problems. I am sure your doctor and many on this board will tell you that it is going to take time for you body (and YOU) to adjust to your new situation.
You seem to have a handle on cramps already. Restless Leg Syndrome is common also. I take a pill!      It does provide some relief. My sleep patterns are funny. Sometimes I sleep well and sometimes (usually for me on non dialysis days) I can't sleep even when tired. I get up watch tv; play on computer (see how everyone is doing on IHD). I small cup of tea and a bit to eat sometimes helps.
Try not to stress out as it is not a solution - stay calm and READ this board. Lots of good advice on here

[cariad]

Hi Heather and sorry to hear of your struggles.

My mother takes Xanax for insomnia, not anxiety which is what it was originally developed for. She swears by it. I took a similar drug, Ativan, for insomnia while in hospital before my transplant, and it works. Just be sure you give yourself enough time to get a full night's sleep on nights that you take it.

It sounds like you are already practicing 'good sleep hygiene' which is what most people would recommend you try first. Good sleep hygiene just means going to bed at the same time every night, keeping your room dark and at a proper temperature (about 68 degrees), cutting out caffeine, refraining from falling asleep to the television, etc.

Insomnia is absolutely brutal and I really hope you find some relief soon.

[CHeatherS]

Well, two nights later and this will be 5 nights with no sleep.  This is killing me.  I got a prescription for Rozerem today and took it tonight at 10:30.... then again at 12:30.  Oh Lord, help me!

[boswife]

Oh no!!!  this is terrable and not good for your health OR sanity!  Did you ask about Zanix?  I'll admit im a pill phobic,(im REALLY afraid to take anything!) but i had to try something for anxiety and i was OVER the top with it.  I took the smallest dose, cut it in quarters, and still it worked for me and i slept and woke up 'in the morning' without an ounce of guilt, anxiety,  or sleepyness.  For me, what was needed was to rid myself of the anxiety and obsessive thoughts over and over and over bla bla bla.  They kept my mind at work and just would not let me fall asleep.  I keep them on hand and need RARLY and though they are not 'for' sleep, they let your mind rest so you can get sleep.  I so hope you find something that works for you.  (dont be afraid if you do get these to take dose perscribed.... im just a lightweight)

[billybags]

My husband would love a good nights sleep. He has not slept properly since he went on Pd. Its as though the brain will not turn off. He has tried lots of medications. Some work for a night others have no effect. He has to snatch half an hour here and there in the day. He can be so tired and he still will not sleep. I think it pees him off because I am snoring away next to him. I do feel sorry for him because it is not good to go with out sleep.

[CHeatherS]

Well, here on my 5th night of NO sleep, and two doses of the Rozerem, I finally hooked up at 3 am and drained and did not fill. Finally I went to sleep, fitfully but the first sleep I got in so long.  I am quite depressed about this.  I will have to try something else.  It's as if there is something with this pressure on the bladder and the diaphragm that makes it so I can't breathe deeply, and I get all anxious about that, and the bladder thing, is like it's connected.  This just isn't natural, THAT'S for sure.  Will have to try something else, rozerem didn't work for me. 

Thanks friends..... 

[Jie]

If the solution makes you difficult to sleep, why not just do the manual exchanges during the day? If you do five manual exchanges a day, it may be enough for you, so that no solution during the night sleep.

[willowtreewren]

 

It is just awful to be sleep deprived. I hope you can get this problem under control soon. 

Aleta

[CHeatherS]

Well, at 3 am I finally just drained but did not fill, and then I got some sleep.  Very weird dreams, probably from the two doses of Rozerem, or just going SO long without sleep, but I got some sleep.  Woke up very hung over, but don't know if it's from the drug or not. 

I know I am new at this, so perhaps it will work out, but I think I will drain at nights for a while until I can get sleep, and then try again.  The problem is, I want to be on the night cycler as planned by next month.....  so I would have to be on at night.  I just don't understand why I have to be at 2500 ML, and wish it could be less.  Gosh, we are all so different. 

Thanks folks, now I am going to force myself to go for a walk today, and see if being very physically tired tonight might help.  It's been a long, dark, cold winter in Alaska, with very little exercise.  I can hardly believe I was the picture of health with abs of steel just a while ago, and now I can't even wear anything but overalls with this big belly, and it's not just PKD kidneys, it's all this solution I am carrying.  I can't even tie my shoes.

Ok, enough complaining.  Blessings on your day all!

Heather, happy for a few hours of sleep.   

[Jie]

The 2500 ml may be the problem. I am not sure how big and tall you are. If you are average size, with PKD kidneys, 2500 ml may be too much. I am probably taller than 95% of women, and the maximum I could take was 2250 ml. Normally I had 2000 ml, and with cycler and tidal setting, there could be 2700 ml inside. The solution inside is equal to filling+ leftover + UF. It is impossible to completely drain all solution. 

[CHeatherS]

Jie, it's great to be heard, whew.  Yes, with the PKD, and for most of us that would include liver, that leaves little room.  They go by the standard height and weight, but that doesn't individualize the room in an abdomen.  I think I shall push this, even though I already have said something to them at the clinic.  And of course, this will have to be resolved before I go on the night time cycler. 

I am going for a walk in the Alaskan sunshine..... hope that helps me sleep at night.  Blessings all.

Heather

[Jie]

Heather, if you insist what you want for a good reason, the clinic will go along with you. For example, the one-month manual exchanges before cycler is the common practice with the clinic. I insisted to start cycler right away. The clinic eventually allowed me to start cycler without this one-month manual exchanges. The reason for one-month manual exchanges is to let patients to know well with manual exchanges in case they need them in the future when on cycler. I did not have any problems to do manual exchanges any time after 3 days of training and with the chart. So it was not necessary for me to have the one-month manual exchanges.

[jgrs]

Hi Heather -  Sleep has always been pretty easy for me, but since I started the cycler a week ago, sleep is a challenge.  Do you live in Alaska?  Are you in the Anchorage area?  Would you like to talk in person?  I would like someone local who is new to dialysis to chat with once in awhile about the ups and downs of this very new lifestyle.  Call me at (907) 345-2134