Trouble sleeping.

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StlJoy
StlJoy Member Posts: 8
edited March 2018 in Surgery - Before, During, and After

Hi

I am desperate, and advice or input is greatly appreciated.

I had bilateral mastectomy with reconstruction almost 6 weeks ago. After getting off pain meds, I am sleeping at most 2-3 hours at a time.

When I am falling asleep or asleep, I get the sensation that I am falling and jerk myself awake. (Used to happen maybe once a year). Or, even worse I get the sensation that I need to move my legor sometimes my whole body. I end up out of bed walking around the house.

I have tried Klonopin, melatonin, Tylenol PM with no results. I end up very tired and sleepy, but then the above happens.

I return to work next week, and the worry of this continuing, I'm sure, is not helping. I feel like a zombie. I hope someone has some advice.

Thanks

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  • StlJoy
    StlJoy Member Posts: 8
    edited March 2018

    I forgot something else. At night I also start to itch (I do during day as well, much worse at night). It starts chest area, especially on side where lymph nodes were removed, but then I end up itching every where, especially my head! I feel like I am going crazy!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Dear StlJoy,

    We are sorry that you have found yourself here but glad that you reached out to our community. We can't say what is causing your sleep disturbances but can hear how frustrating and debilitating it is. You may want to check out the Insomniacs Thread as there are some tips posted there.You may want to contact your physician for other possible solutions. Keep us posted. The Mods

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  • Falconer
    Falconer Member Posts: 1,192
    edited March 2018

    Stljoy, so sorry you're dealing with sleep issues. I understand how debilitating that can be. Have you tried exercise? I find that if I exercise during the day, I sleep better at night. For me it's running and yoga, but whatever floats your boat. There's a wonderful thread on the boards called Let's Post Our Daily Exercise that inspires many of us. Good luck to you.

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  • Magari
    Magari Member Posts: 354
    edited March 2018

    I have always had difficulty sleeping, even before the stress and discomfort of breast surgery and chemo. My doctors all agree that sleep is extremely important for healing and have been happy to prescribe medication to help me get a decent night's rest. I take Ambien nightly, which gets me at least 3-5 hours of fairly uninterrupted sleep. My MO recently added Ativan and now I am able to sleep a full 7 hours and wake up refreshed yet not "hung over" from the meds. It feels almost miraculous.

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  • Nursepatient35
    Nursepatient35 Member Posts: 166
    edited March 2018

    StlJoy, I feel your pain. I'm 4 weeks post-op and haven't had a good night's sleep since maybe the first few days when I was all drugged up. I go back to work in 2 weeks and take call for the hospital I work at so can't be using any sort of ambien or sleeping pills. I can't sleep on my side because the TE's hurt my muscles and I can't sleep on my back because I just can't. It's awful and I feel for you. I also get almost restless legs as I lie there sort of like you describe.

    My only advice that may or may not help is maybe up your melatonin dose and also take Benadryl with that? I truly think we start developing bad sleep habits and it becomes a mental game we play on trying to sleep. Now how to fix that is beyond me. The first 3 weeks, I'd lie in bed, establish that I couldn't sleep and then move around the house. I slept nil. Lately I stay in bed and just reposition a million times. I sleep a hair better. I'm sure the exercise tip would help but just haven't gotten to that point yet. Please let me know if you get it figured out.

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  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited March 2018

    I sympathize with the sleep issues. I had them while going through chemo and surgery. I'm a big fan of melatonin -- been using it for many years but some times it wasn't enough. I eventually tried ZZZquil and it worked well for me. It's just liquid benadryl, but for me it works much better than benadryl. Zzzquil comes in both alcohol and non-alcohol formulas.

    I was cranky and a little depressed when I was sleep deprived. My MO wanted me to see a therapist, but I knew that what I really needed was restful sleep. I don't think she understood that.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited March 2018

    I had never tried any guided imagery tapes until my BS recommended it and oh, my gosh, what a difference it made. Totally calmed my mind. Your library probably has some you can download but I've seen Belleruth Naparstek recommended here. She has several tapes you can download or order from Amazon: Guided imagery for sleep. I got one for a friend to help with grief and she said it helped immensely. Maybe this is something that will work for you.

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  • Aliceinchains
    Aliceinchains Member Posts: 64
    edited March 2018

    Which state do you live in? I live in Oregon and use a marijuana product called Tincture that is specifically for sleep and/pain. It has been a life saver and I don’t have to use prescription sleep meds. But it just depends on where you live if you can get access

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  • honeybair
    honeybair Member Posts: 746
    edited March 2018

    I started having difficulty falling asleep the latter part of 2017 and now take .25mg. of alprazolam every night, which has helped me tremendously. I began to experience and still do what i described to my family doc as "'monkey brain" in which my mind just fills itself with rapidly changing images, thought patterns, and songs whenever I first go to bed. I just wonder if chemo has somehow altered my brain in some horrible way. I know that people of all ages experience sleep problems. It is is truly a curse. I have also begun some breathing exercises whenever I go to bed, and they have helped tremendously. I would like to wean off my generic Xanax, but fear the inability to fall asleep. I also have trouble staying asleep. So grateful to have some wonderful information from all you ladies.

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  • StlJoy
    StlJoy Member Posts: 8
    edited March 2018

    Thanks so much for all the responses!

    I’ll come clean. In July, I had bariatric surgery. Before that, I drank 2 things: 2 cups of coffee in am, water rest of day. Only real healthy thing I did. Since that surgery, I can’t drink water, it hurts. Sometimes I do anyway, but I pay for it. So now I drink what I call plastic tea. The peach-tea drink mixes. Crystal light. It’s ok, but I wonder what’s in it and wish for my water. Well, crystal light is caffeine free. I bought some Walmart brand. Didn’t even think to check the label. It is NOT caffeine free. So, while I was googling why I couldn’t sleep at 2 am, I was sucking down 30 oz of caffeinated beverage. Yes, I am a dumbass!!! Feel free to laugh at me!! But I’m so glad I figured it out, I’m a happy dumbass!! Now I’m getting 3-4hours uninterrupted and feel so much better. Still not a total night sleep, but a vast improvement.

    I feel for all of you that can’t sleep. It is hell and effects everything.

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