Coping with sleeplessness!

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Linwentz
Linwentz Member Posts: 133
edited November 2017 in DCIS (Ductal Carcinoma In Situ)

I have never been a great sleeper. I have a hard time getting & staying asleep. DH snores like a freight train, so that doesn't help!

Now that I have been diagnosed with DCISsleep is more evasive than ever. I have read that fatigue really kicks in during rads.So in order to " rest up" before all the craziness, I was wondering what you did to ensure a good nights rest. Any and all tips, advise and suggestions are welcome.

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited July 2017

    Exercise. Lots of it.

    This includes during rads. I am a cyclist and just completed my eleventh Seattle-to-Portland, cycling 200+ miles over 2 days. Talk about needing sleep this past week!!! But even a 5k walk will make a major difference. Go in the AM while it's still cool out.

    I trained for that year's Seattle-to-Portland during rads that year, and got most of my energy back just in time. I will mention that if you need an extra energy boost to complete your walk....EAT THE ENERGY BAR!!!

    You also want to watch out for deconditioning which has a major negative impact on so many breast cancer patients. It's prevented by guess what?

    Good luck, and get out there. - Claire 

  • Linwentz
    Linwentz Member Posts: 133
    edited July 2017

    Thanks for the tip on exercising. I re-joined the gym as soon as school was out & my retirement was official. I haven't gone once since all of the craziness started with the suspicious mammogram yada yada yada! So looks like exercising will be my new job! By the way, what is reconditioning?

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited July 2017

    "Deconditioning" is what happens if you don't move. You exchange muscles for flab, and then gain weight. Add to this the impact of treatment, which is why so many women never make it back to their old selves. Not where you want to go.

    I am now almost 10 years older than at diagnosis, but can tell you that I did better on the hills of the Seattle-to-Portland than ever (other than the one where I dropped my chain).

    Off to the gym..... I just did a 20 mile ride which is all my buns would take post STP. More cycling next weekend. Planning a hike for tomorrow. - Claire 

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2017

    I have chronic insomnia. It became exponentially worse from the point of my biopsy. Proper rest is essential for healing. I also have bipolar disorder and lack of sleep is my fast track to mania, so it was extremely important for me to sleep. I had my doctor order something to help me sleep.

    Best decision ever. My treatment took about 12 months and included lots of anxiety and PTSD. I would never have made it without medication.

  • debiann
    debiann Member Posts: 1,200
    edited July 2017

    I was an insomniac before BC and I still am, but I found some things that help: a completely dark bedroom, delta wave sleep music, avoiding electronics (the computer or my phone) before going to bed.

    Also, following my mastectomy - my husband started sleeping in the spare bedroom during my recovery. We discover we like it that way, we both sleep better alone.

    I guess that sounds pretty sad for a married couple, but we get more sleep this way. We will start out in the same bed, watch tv, cuddle, talk, etc... but when its time to sleep we kiss goodnight he he goes to his own room. My husband grew up with many siblings, he said this is his first time having his own room. I grew up an only child - I like not having to share, lol. It works for both of us.

  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    My insomnia worsened the night after live chatting with my HR people. Just when I'm about to fall asleep and I'm in a neutral place mentally, WHAM! Thoughts crop up about the day's conversations and what hasn't happened yet. Call it anxiety, but it really bothered me to the point where I would get up and try to read some more of Dr. Susan Love's B Book. After reading some of her dry, scientifically based passages, that would get me back in the mood to sleep. If not, I catch up on letter writing while listening to music (not delta wave, mind you...I should check that out!). Another thing, I've learned that there's no point in trying to start a load of laundry past 7:30 PM. I have these HE machines and they're anything but fast; the times displayed are off too.

    Whatever happened to my being able to stay awake until midnight without any fatigue? I think that went out the window almost three months before I discovered the lump. So, the best sleep that I've been getting is when I'm tired. Around 9 PM I'll switch out the clothes to PJs and just crash. For some reason, I don't experience awake brain or thoughts of that kind. Then, around 1:30 or 2 AM, I wake up because my dog says that I forgot to let her out (cold wet nose in contact with my hand or elbow along with a mournful groan coming from my 2 year old lab). After she goes out and lays down, I either try to go back to sleep or drink a little water first and check to see if I forgot to take some of my meds (pill organizers do help).

    Also, two doctors want me to consider a sleep study. Obviously, not now since my treatment starts in 4.5 days. None of them have suggested anything to take, but I'm going to bring it up at education/orientation in a couple of days. More sleep will help me with work and at home too. I'm also going to try my best to stay away from any soda pop. That is/was one of my vices, that and chocolate. Carbonation and sugars, no good (the way I do it). Small meals or snacks, more steaming of veggies, YUM, and trying not to continue my bad habits with greasy/deep-fried foods.

    I think I may try a little beginners yoga too for relaxation. There are free videos that I can access on my roku and TV. I also sleep better when it's cooler in the house so I'll tip toe downstairs and turn the temp down by a couple of degrees; makes a difference when there's circulation in the house, IMO.

  • LAstar
    LAstar Member Posts: 1,574
    edited July 2017

    I agree wholeheartedly about exercise. It helps with mood, dealing with stress, and calming the mental chatter and it makes us nice and tired when bedtime comes. When my hubs snores (usually if he puts on some extra weight), ear plugs are critical!

    Debiann, I love the thought of your husband enjoying his very first own room.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    So for anyone who wants to look at a (non-prescription) option to aid in sleep, there actually is a relatively new product on the market called dream water. There are 3 main 'active' ingredients. Melatonin is the first. That is a compound that is naturally made in our bodies, although levels naturally decline as we age (which leads many elderly people to sleep less). I remember (quite a long time ago) studies were done to see if ingestion of melatonin would have similar effects to naturally produced melatonin. Thankfully, the answer is yes. :) Some people experience a bit of fogginess upon waking from melatonin, but I do not. I love it. It is not habit forming (other than sometimes people are reluctant to stop taking it if they've had episodes of insomnia and are anxious about it returning). In our natural state, melatonin levels start to go up when we near bedtime and help us initiate sleep. (they also go down during the night as our wakefulness hormones start to increase)

    The next active ingredient is GABA (gamma aminobutyric acid). I love this too, and have taken it with great effect when my mind has been too active and unable to shut down at night. So, our bodies have an excitatory response, the Glutaminergic system. This is the system that becomes active when we are anxious and keeps us awake and restless. Glutamate is the most common of those neurotransmitters. The opposite response is represented by the Gabanergic system. (GABA is a neurotransmitter) This is the calming or quieting system in our bodies. So GABA sort of tells our mind it's time to slow down, time to rest.

    The combination of the two of them means that your body is getting the hormonal signal that it's time to sleep and that your brain is winding down so that you are able to engage in sleep.

    5HTP is the last ingredient. That is a precursor for Seratonin - and an effective way of increasing serotonin in the brain, which leads to regulated sleep and anxiety.


  • Goose11
    Goose11 Member Posts: 5
    edited July 2017

    I have had chronic insomnia for as long as I can remember. I was diagnosed with DCIS on 6-1-17 and I am still trying to decide on treatment plan. I lay in bed thinking about my diagnosis unable to sleep most nights. A few weeks ago, I started acupuncture to help with stress and insomnia. I thinking that it is helping. I also take Valeria root (Melatonin doesn't work for me).

  • SiameseX2
    SiameseX2 Member Posts: 30
    edited July 2017

    I don't suppose there is a spare bedroom where you or hubby can go so your sleep is undisturbed? I get it, I think I got some of my worst sleep when I was married. Now my pets are the ones waking me up!

    My radiation will be done tomorrow. I found it helpful to give myself a strict bedtime of 10pm and wake up at 7am. I needed that extra hour to recover from all of this, I figured it out after needing naps in the first few weeks. But the naps were inconvenient for my schedule.

    I also worked out throughout radiation, which meant I was often falling asleep on the couch before 10!


  • exercise_guru
    exercise_guru Member Posts: 716
    edited July 2017

    I have had insomnia for as long as I can remember. Even without stress I have to keep the strictest routine and give up caffeine by noon and computers by 7 or I am up far into the night and I wake often. Now that I am on Tamoxifen the hotflashes make it more difficult to fall asleep. I was on Ativan at bedtime for a year of my treatment. I am now on Ambien and I am relieved and grateful to get sleep.

    I noticed I need far less ambien now that I can exercise more consistantly and now that I am through treatment. I can work to discipline myself and establish a better routine. Most nights I stare at the ceiling for 2 hours listening to my husband snore. Melatonin will work for me if I am strict with my routine but I still wake often in the night.

  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    I was prescribed Xanex as a sleep aid and have been taking it combined with melatonin about 20 minutes prior to bedtime for about a week now. My problem has not changed: I'll sleep for a couple hours then begin waking every 1 1/2 to 2 hours throughout the rest of the night - even on these products. I've started taking another melatonin around 3am but the problem still persists.

    I've read that Magnesium can help with sleep issues. Anyone have experience with it? I'm feeling like a walking zombie and am about to start radiation which I understand will cause even more fatigue.

    I'd appreciate any advice.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    tlfrank, Xanax is the wrong thing if you have difficulty staying asleep, it is better if your problem is sleep initiation. Xanax has a very short half-life, which means you feel it start to work quickly (i.e. fall asleep) but it also leaves the body in a relatively short amount of time (i.e. can lead to rebound insomnia). I haven't personally taken magnesium for sleep, but do understand it has that benefit for some people. If you don't find it helpful at first, try adding calcium when you take it and see if that works better. What I have taken, that has been pretty helpful in addition to Melatonin, is GABA (gamma amino butyric-acid). It is a neurotransmitter inhibitor that calms and quiets the mind. If you take another Melatonin at 3am, do you feel like you have difficulty feeling fully awake when you have to get out of bed?

  • tlfrank
    tlfrank Member Posts: 199
    edited November 2017

    MTwoman - Taking the melatonin at 3am does not change the way I feel in the morning, but I'm so used to waking up tired anyway. If you try it, please let me know how it affects you. Thanks for the tips on combining calcium with magnesium and GABA. I'll give them a try. It would be so nice to sleep through an entire night, just once or twice a week.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    At this point, I sleep just fine with 3mg of Melatonin, so I don't need to take any additional, thanks! I was just wondering as I've heard other folks indicate that they have a "melatonin hangover" if they take it too late. Hoping you get better sleep soon!

  • Annette47
    Annette47 Member Posts: 957
    edited November 2017

    I’ve found that melatonin lasts me about 1.5-2 hours at most, so as long as I take it with more than that amount of time before needing to wake, I have never experienced a “hangover” effect. It’s better at getting me to sleep than keeping me asleep. Exercise helps more with that.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    I haven't ever experienced that either Annette47, but I've heard others complain about it. We all metabolize substances differently, so we each just have to try things on "for size".

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2017

    I have suffered from insomnia for years. Recently, I was prescribed Ambien Extended Release. It's been helpful. Even when I wake up at 2:00 am or thereabouts, it's not hard to fall asleep.

    Best wishes to you all! Insomnia sucks.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    ElaineTherese, Ambien can be extremely helpful. It is NOT indicated for use over extended periods of time, however, and has been tied to things like somnabulic episodes (walking around and not remembering it). I actually had a client who had these. Once she believed the (numerous) folks that told her they saw her out at night (when she swears she wasn't out of her apartment), and reported them to her psychiatrist, he took her off of it. It's even been reported that people have driven without remembering it. https://www.mayoclinic.org/diseases-conditions/insomnia/expert-answers/ambien/FAQ-20058103

    Just fyi.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2017

    Thanks, MTwoman. I was aware of those side-effects before I began Ambien. I have had one episode where I ate something without remembering eating it. But, that was after I'd been to a formal reception where I had two glasses of wine. Since then, I've been very careful not to drink while on Ambien, and nothing has happened since. My aromatase inhibitor -- Aromasin -- has some steroids in it. I will probably always need some help falling asleep while I am taking it.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited November 2017

    Glad that you're aware and have found something to help with sleep. Insomnia s*cks.

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