Insomnia & Anxiety

[louman1961]

Hi,
I've been experiencing bouts of insomnia and anxiety in the last couple of months.
I do have general anxiety disorder and using CPAP therapy for my sleep apnea.
I also have arthritis in my right shoulder and left hip, and on some nights I do have pain that prevents me from getting a good night's sleep.
I have noticed that when I get upset or frustrated because I can't sleep, my anxiety goes up to a point that my shoulders and back muscles tense up, I think this is contributing to my night time pain.
I've been doing some deep breathing exercises to calm and help me relax, tonight is my first night that I'm calmer than previous nights that I can't sleep.
I have taken some Ativan yesterday during the day to help me relax because I had bad bouts of anxiety.
I also read that Ativan can cause rebound insomnia.
I have to go often pee at night, I have PKD and have some kidney function left, and that wakes me up and the pain in my shoulders.
Is insomnia and anxiety common among dialysis patients?
Would like to hear others on this message board how they cope with anxiety and insomnia?

[iolaire]

Post transplant I had lots of aches and pains and thus had problems sleeping from the high steroid levels. I found a relaxing bath helped break that cycle it calmed my aches and also got me to a point where I could nod off.

Is there something like a bath that that could do to relax yourself and calm your aches?

[louman1961]

iolaire, I can't take a bath because of my PD catheter site, it is not recommended to have it immersed in water due to bacteria possibly causing an infection and peritonitis. Someone has suggested to use a heating pad. Taking a hot shower before bed helps me a bit. I also use pain cream Tiger Balm that helps also. Do you still have aches and pains since your transplant since your steroid levels have lowered?

[iolaire]

Do you still have aches and pains since your transplant since your steroid levels have lowered?

No it went away.  But I do not sleep as good as I did years ago.  I don't know if I lost my great sleep at start of dialysis or post transplant.  The best sleep I get is during my naps.

[Cupcake]

I was always a great sleeper, even on cpap and PD. But since transplant I feel like I'm just dozing all night long and about every week or two I am up until 2-3 am. I blame the transplant meds. Either that or my donor (who is my sister-in-law and a notoriously light sleeper) passed on that trait to me.

I have family members with anxiety disorder--it must be a terrible feeling--I try to keep things constant and try not to put demands on them or bug them. I just give them space and enjoy the good days. Medication and behavioral therapy are the main treatments-I hope you have a good 'talk doctor' and support system. And you have us!

[louman1961]

As I'm replying now that I'm trying to fall asleep and can't...it's a battle wanting and feeling to go to bed but can't let go..it seems that I feel scared going to bed.
The insomnia kicks in and my anxious thoughts come back, what a battle!
I feel anxious and fear and dread blocks the desire to fall asleep.
i also think about the past experiences at night of not being to sleep in my small apartment and feeling overwhelmed and scared and overly anxious of not being able to sleep.
I have a hard time to relax and unwind and letting go of my anxiety.
I have a hard time relaxing in my recliner or lay down on my couch. scared to fall asleep.
I will be seeing my talk doctor next week to re-assess my current anxiety disorder and he might possibly recommend a new medication to help me cope with anxiety that is causing most of my insomnia that I'm experiencing.
I'm seeing my mental health worker and working out strategies to combat this problem.
Thanks to this message board I have support here that some of us has experienced insomnia and anxiety issues and share what has helped them.

[louman1961]

I'm experiencing insomnia tonight, I figured out that one of the causes is that I have to pee often that wakes me up from sleep. I'm on PD. I do have some kidney function left having PKD. I might have to limit my water intake in the evening.

[louman1961]

I'm still figuring out what mental block is blocking and causing my fear of going to bed.

[Cupcake]

This might not be what you are experiencing, but I notice when I can't sleep I'm up peeing every hour; but, when I am sleeping well, I only get up once to go. I think my alert brain THINKS I need to go but I really don't.
I wouldn't limit your fluids-since you still pee its important to keep the pipes flushed out.

[Alexysis]

 The anxiety is a separate issue from your kidney issues. All dialysis does for me is make me very drowsy a couple of hours after treatment, which makes it easy to go to sleep. Unfortunately, that wears off after about 4 hours, so I always get up for a bit in the middle of the night. Since I still have output, it's usually a good time to go. I do tend to thrash about a bit on nights after dialysis, so I sleep alone on those nights; even the cats don't want to sleep with me! I also take 1 regular aspirin when I come home from dialysis, to keep the usual headache from happening.

[louman1961]

I do agree with you Alexysis that it's my anxiety that is the main cause of my insomnia, I have to accept that it will take a while to get back to having a good night's sleep. My anxiety over experiencing bad nights of sleep is clouding the reality that this month that I only had 4 bad nights sleep, I'm too much concentrating on the bad nights of sleep, and I relatively slept well the other nights. The more that I convince myself that's my anxiety that is distorting that fact and making me catastrophizing and saying to myself that I won't be able to cope the next day. But in reality I have coped but I don't like the feeling of feeling crappy the next day. I have to accept that the reality of kidney disease that it could be a factor that we experience insomnia more than others. Acceptance and not getting upset over things we can't control, like many symptoms of CKD. A calm approach to our issues and being kind to ourselves and not get upset or worried when health challenges come up. Time to practice more mindfulness and relaxation and deep breathing exercises on a regular basis would help lessen the anxiety and insomnia  that I've been experiencing during the summer months.

[Marilee]

Hi Louman,

I'm wondering if, since you have a general anxiety disorder, that perhaps you have medication to help with that? Could it be that the dosage needs to be adjusted because of dialysis? My hubby had to have his PTSD meds boosted this year because his anxiety levels got worse - of course, he has good reason to be anxious (as do you): Being on dialysis is a lot like waiting for the other shoe to drop.

[louman1961]

Hi Marilee,
I did have my anxiety med Ativan increased and taken at bedtime every night, I've been sleeping a lot better, I continue to do mindfulness meditation also, my insomnia issues were mostly caused my anxiety, I have developed a bedtime routine to wind down before sleep, and the Ativan helps me calm down before I go to sleep.
I've been also better tolerating my shoulder pain at night, most tense muscles were relaxed when I'm calmer.
I guess our bodies adjust to chronic pain and dialysis and we get used to the new norm in our life.

[Marilee]

Oh, excellent! I'm delighted to know that you've found a good regimen to bring better sleep. 

[louman1961]

A setback  tonight..the fear of not wanting to sleep crept in..I had almost a week of good sleep..Still awake and struggling and don't want to sleep! Where do I get this distorted thinking .. maybe it's thinking about pain and how hard it is to cope with dialysis every night and using my CPAP machine too..will try to go back to sleep hopefully a bit calmer.

[Marilee]

I'm not a psychologist, so grain of salt here, but I think it goes a bit like this:

"Time to hook up. I hate having to hook up to all these machines every single stinkin' night. Yeah, but they keep me alive. I don't wanna die." And bingo, we arrive at the most basic fear of all: Fear of annihilation. The one that keeps anyone up at night.

Sleeping is a time of being out of control, and hooking up a bunch of machines takes away freedom.

I think it's pretty normal to get hung up on not wanting to go to sleep. When that kind of thinking takes ahold of me, all I can do is turn on the light and DO something: A cup of tea and a cookie; A bit of light reading. Basically, reset and try again in an hour.

This part of the song, "The Book Report" from "You're a Good Man, Charlie Brown", kinda embodies what my brain does in the dark of the night - watch the fella in blue, who is playing Charlie Brown:

https://youtu.be/3uwJgz7sSr8?t=198

I hope tonight goes better for ya!

[louman1961]

Hi Marilee,
I did come to the same realization as you mentioned in your previous comment, the basic core issue that I'm too scared to sleep sometimes, is the fear of the unknown and the fear of death, dying in my sleep.
With my experience of untreated sleep apnea in the past, it woke me up many times and jolted me out of my sleep with gasps of air,
I have struggled with the fear of dying in my sleep and had past anxiety about it..
I subconsciously resist and struggle with this even when I take naps, I get anxious because I don't like the feeling of headaches and being zonked out the next day because of lack of sleep.
My anxiety tells me that I will not be able to function, but I do function, yes tired during the day.
I'm struggling to take control over my anxiety because I haven't decided to say to myself, I'm in control not the anxiety!
Anxiety is taking control on how I should sleep, not me.
The fear is holding me back and preventing a good night's sleep, and the bad nights of sleeping and the struggles and panic over not sleeping for  over a couple of months.
I even don't like being in pain while sleeping, like you mentioned it's all part of ACCEPTANCE to my new reality that I'm on PD dialysis is is taking my freedom away even changing the way I get sleep now..I have to sleep in chunks of a hr. or 2 get up and do it again for the remainder of the night. and with pain.
I do get up and do other activities like reading a book or listening to relaxing music to distract myself and not to get overly anxious of not sleeping.
Now it's time for me to go back to bed and get some sleep!

[Marilee]

I used to be a chronic Worrier. I lived in fear daily and it drove me batty. I found myself reading the book, "The Power of Now". It helped me understand that my mind is always focused in one of 3 states: Past, Future and Present. I can tell when I'm thinking about the Past: Nostalgia, regrets, if-onlys... Future: Anxieties, worries, what-ifs, daydreaming... and - and this is key -  the Past and Future are pure imagination. The only time my mind is dealing with Reality is when it is fully focused on the Present moment. We all need to spend some time in the Past - reviewing events that occurred to learn; Future - planning events we want to come about. But Present moment awareness brings freedom from anxiety, regrets and all that. Some folks get there with activities that demand focus - like mountain climbing. Some folks prefer meditation. Me? I like to make music! I play an instrument and sing, and that's fully engaging in the present moment where anxiety cannot exist. If I find anxiety kicking my butt, I know that I'm focused on an imaginary future that I cannot control - time to do something and focus on the present - the only Reality, the only moment I can do any thing at all.

The really difficult thing with dialysis and sleep apnea (and the host of other ailments that go along with all that) is having the physical energy to engage in the Present. That leaves the mind adrift to wander into the Past or the Future. Therein lies the true challenge. If you can learn to practice meditation your mind can be freed from Past and Future traps and it's not physically demanding.

One thing I do that's not physically demanding, but mentally engaging in the present moment, is a game: A PC game or a game on the Nintendo Switch. It's not so much that I'm actually saving Princess Zelda (for example), but I am actually playing a game and that demands full focus in the present moment. It may not be as proudful as working in the garden, but it beats the heck out of wallowing in worry.

[louman1961]

Hi Marilee... Thanks for your tips and advice..will continue doing meditations and practice mindfulness and play more concentrated computer games and try not to willy in worry.. concentrate on enjoying activities that are positive and fun to do..

[louman1961]

Marilee, I would like to know what is your bedtime routine to help you sleep at night..I would like to sleep longer..but I wake up often, I sleep for about an hour or two then I'm up again..it seems that many people on dialysis have sleep issues..how do you cope?

[Marilee]

Hi Louman! So, bedtime... My hubby is the one doing PD, but the machine beeps in the night nagging him to roll over, and he's got hearing issues, so that means the machine wakes me up to wake him up. These days, it only nags about twice per night, so sleep is disrupted kinda like having a baby in the house.

Hubby's sleep is no longer a night-time-only thing: He sleeps after breakfast, after lunch, snoozes after dinner, wakes often in the night. I really wish he hadn't lost his residual kidney function: He was much better a year ago.

My favorite thing to do to ensure a decent night's sleep is to climb under the covers, switch of the lights and count my blessings. I review the day in terms of gratitude with phrases that start out like, "I am so thankful for ...". Even the stuff that made me angry earlier in the day, I spend time looking at the event from different angles until I find something about it to be honestly thankful about. It de-fuses the angers, balances my attitude and I always fall asleep before I'm finished listing all that I am thankful for. "I am thankful for my dogs; my hubby; my safe warm home; our clean, fresh well-water. I am so glad that dinner came out well tonight and hubby could eat it all. I'm grateful for the chance to learn more about plumbing - the leak in the yard has been difficult to find and fix - it's challenging me to learn to use more tools and I appreciate better what hubby did before..." stuff like that. When you wake up after a couple of hours, give that a shot to see if it doesn't help you get back to sleep.

It also helps to do gentle yoga-type poses before bed, but I only remember to do that if I've got a headache coming on .

Stuff I've learned NOT to do include caffeine before bed (it really keeps the brain busy and loud), intense movies, anything that gets me hyped up.

Have you tried supplements like melatonin? When I traveled for my job, I'd get my time-zones all honked up, and melatonin tablets helped me get back to normal quickly and without side-effects.

[louman1961]

Hi Marilee..I do write in my gratitude journal app every day.. maybe I'll read over my entries on what I'm grateful for before bed..I will ask my doctor about melatonin tablets to take to help me sleep.o

[Marilee]

Hi Marilee..I do write in my gratitude journal app every day.. maybe I'll read over my entries on what I'm grateful for before bed..I will ask my doctor about melatonin tablets to take to help me sleep.o

How cool that you keep a gratitude journal: Great idea! Did you ever read that book, "Count Your Blessings" by John Demartini? That one really helped me to try to see events in a more balanced way (not all good, not all bad).

Hope the melatonin is OK for you and helps.

[louman1961]

Hi Marilee,
I forgot to ask about the melatonin supplements at my doctors last visit. my memory has been bad with this anxiety and insomnia.
I think part of the reason that I'm still struggling is, that I have to accept my new life reality of my chronic kidney disease PKD and dialysis and my irregular sleep, insomnia and pain.
I try to get as much sleep as I can, I first sleep for about an hr, and then wake up and try to fall asleep again, maybe until 2 or 3am and get more hours, if I get 5-6 hrs, I can cope for the next day, but sometimes I only get a couple of hours, and really struggle the next day.
I'll take a afternoon nap or two to refresh.

There are days that I wish that I could feel better the way it was before dialysis, but that's not the reality now.
I have  to learn and use my coping techniques to control my anxiety like deep breathing exercises and meditation and mindfulness.
I have to learn to enjoy life and being in the moment and not constantly be preoccupied with my sleep issues and insomnia.
I have to do things that I enjoy, I have found that my singing karaoke and music keeps me going...and a good distraction for me.
I also volunteer at a drop-in center that helps and supports people that are going through mental health issues in their lives.
I also bowl on Wednesday afternoons at our senior bowling club, when I have enough energy.
I like going for daily walks also.
Having a positive outlook also helps and learning to be patient and more kind to myself when I'm struggling.

I would like to hear what has helped people here on this message board to accept the reality of CKD and dialysis in their daily life.
Thanks!

[Marilee]

I'm just a support person, so while I've got my stresses, they're just nowhere near what dialysis patients must face. That said, if I'm not too depressed, I'll play my instrument and sing, and if I'm inspired, I'll make a video to share with family and friends. Recently, someone asked me to learn a song and it inspired me to make this video using pictures of our wedding from the '80s: https://youtu.be/SocNI9kvh_c It was a completely engrossing project mentally, while not being physically taxing, and I really love how it turned out. They say "follow your bliss" and I think the first step is to discover what your bliss is.