Apart From the Side Effects of Radiation Post

Arthur123
Arthur123 Member Posts: 19
in Head and Neck Cancer #1
I post this separately as I'm not sure if this is from radiation, chemo, or neither. I am two and a half years post treatment from SCC of tonsil and neck and really have but one complaint. Like many of you I still have a lack of saliva and some tooth decay but my most serious complication is a lack of sleep. I can honestly say that I haven't had a great nights sleep since I started my treatment. I've tried most of the over the counter things but I'd rather not get into the prescription drugs like Ambien and others. I just can't seem to put together more than three hours of sleep at a time and it gets frustrating being tired most of the day. I workout 4-5 times a week and that doesn't help either. I did sleep like a baby before the illness. Any thoughts or "cures" would be greatly appreciated.
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Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Seems Common
    It seems to be common....not sure if it's the low saliva at night, added fluids..or a combination of many things.

    But I know myself and at least Sweetblood (Dawn) have similar sleep habits..

    I rarely get more than 3-4 hours of good sleep, but I do go back to sleep for a few more once I'm up and take the dogs out. They seem to think they need to go potty if they hear me up, LOL...

    Best,
    John
  • Arthur123
    Arthur123 Member Posts: 19
    #3
    Skiffin16 said:

    Seems Common
    It seems to be common....not sure if it's the low saliva at night, added fluids..or a combination of many things.

    But I know myself and at least Sweetblood (Dawn) have similar sleep habits..

    I rarely get more than 3-4 hours of good sleep, but I do go back to sleep for a few more once I'm up and take the dogs out. They seem to think they need to go potty if they hear me up, LOL...

    Best,
    John

    Thanks John. I think you're
    Thanks John. I think you're probably right as to the cause being the lack of saliva. The answer to that is to dring a lot of fluids before going to bed but then you know you'll be up early because of that. :)
  • robinleigh
    robinleigh Member Posts: 297
    #4
    Arthur123 said:

    Thanks John. I think you're
    Thanks John. I think you're probably right as to the cause being the lack of saliva. The answer to that is to dring a lot of fluids before going to bed but then you know you'll be up early because of that. :)

    issue with sleep
    A very good issue to address. My husband feels like he has a good night's sleep if he has 3 or 4 hours at a time and then another 2 or 3 later. But, I know all that interrupted sleep is not best.

    We've tried every prescription: ambien, ambien cr, restoril, ativan. I'm wondering if anyone has had luck with melatonin. We haven't tried that yet. Or benadryl?
  • Mick123
    Mick123 Member Posts: 18
    #5
    robinleigh said:

    issue with sleep
    A very good issue to address. My husband feels like he has a good night's sleep if he has 3 or 4 hours at a time and then another 2 or 3 later. But, I know all that interrupted sleep is not best.

    We've tried every prescription: ambien, ambien cr, restoril, ativan. I'm wondering if anyone has had luck with melatonin. We haven't tried that yet. Or benadryl?

    Sleep Aids
    Robin.

    I have tried Melatonin as well as Benedryl with not very good results. The best they did was to help me fall asleep, which was not really a problem to begin with. It's staying asleep past that 3 or 4 hour window that is still the issue and they didn't help with that. Same results with Ativan. I get that initial 3 or 4 hours sleep and later in the morning maybe 1 more hour and although it's not enough, sadly I am getting used to it. Could be one of those issues that goes away with time which would be great for both your husband and myself.
  • CajunEagle
    CajunEagle Member Posts: 408
    #6
    Mick123 said:

    Sleep Aids
    Robin.

    I have tried Melatonin as well as Benedryl with not very good results. The best they did was to help me fall asleep, which was not really a problem to begin with. It's staying asleep past that 3 or 4 hour window that is still the issue and they didn't help with that. Same results with Ativan. I get that initial 3 or 4 hours sleep and later in the morning maybe 1 more hour and although it's not enough, sadly I am getting used to it. Could be one of those issues that goes away with time which would be great for both your husband and myself.

    Dry mouth spray
    Yes......same here with the sleep interuption. I have no problem falling to sleep, but seem to always wake up 3-4 hours later. But when I do wake up lately, I've been able to return to a deep sleep in maybe 10-15 minutes. Awakening with a Saharan Desert type dry mouth is an awful feeling, so for a year I used Biotene Spray, but it would burn my mouth, and thus kept me awake for an hour or so. I've switched to Stoppers 4 spray and have it on the night stand next to the bed. It contains no alcohol, which reduces the burning sensation, and allows me to return to a restful sleep. It still doesn't help me to putt better the next day. :)

    Larry
  • CajunEagle
    CajunEagle Member Posts: 408
    #7
    Mick123 said:

    Sleep Aids
    Robin.

    I have tried Melatonin as well as Benedryl with not very good results. The best they did was to help me fall asleep, which was not really a problem to begin with. It's staying asleep past that 3 or 4 hour window that is still the issue and they didn't help with that. Same results with Ativan. I get that initial 3 or 4 hours sleep and later in the morning maybe 1 more hour and although it's not enough, sadly I am getting used to it. Could be one of those issues that goes away with time which would be great for both your husband and myself.

    Dry mouth spray
    Yes......same here with the sleep interuption. I have no problem falling to sleep, but seem to always wake up 3-4 hours later. But when I do wake up lately, I've been able to return to a deep sleep in maybe 10-15 minutes. Awakening with a Saharan Desert type dry mouth is an awful feeling, so for a year I used Biotene Spray, but it would burn my mouth, and thus kept me awake for an hour or so. I've switched to Stoppers 4 spray and have it on the night stand next to the bed. It contains no alcohol, which reduces the burning sensation, and allows me to return to a restful sleep. It still doesn't help me to putt better the next day. :)

    Larry
  • CajunEagle
    CajunEagle Member Posts: 408
    #8
    Mick123 said:

    Sleep Aids
    Robin.

    I have tried Melatonin as well as Benedryl with not very good results. The best they did was to help me fall asleep, which was not really a problem to begin with. It's staying asleep past that 3 or 4 hour window that is still the issue and they didn't help with that. Same results with Ativan. I get that initial 3 or 4 hours sleep and later in the morning maybe 1 more hour and although it's not enough, sadly I am getting used to it. Could be one of those issues that goes away with time which would be great for both your husband and myself.

    Dry mouth spray
    Yes......same here with the sleep interuption. I have no problem falling to sleep, but seem to always wake up 3-4 hours later. But when I do wake up lately, I've been able to return to a deep sleep in maybe 10-15 minutes. Awakening with a Saharan Desert type dry mouth is an awful feeling, so for a year I used Biotene Spray, but it would burn my mouth, and thus kept me awake for an hour or so. I've switched to Stoppers 4 spray and have it on the night stand next to the bed. It contains no alcohol, which reduces the burning sensation, and allows me to return to a restful sleep. It still doesn't help me to putt better the next day. :)

    Larry
  • CajunEagle
    CajunEagle Member Posts: 408
    #9
    Mick123 said:

    Sleep Aids
    Robin.

    I have tried Melatonin as well as Benedryl with not very good results. The best they did was to help me fall asleep, which was not really a problem to begin with. It's staying asleep past that 3 or 4 hour window that is still the issue and they didn't help with that. Same results with Ativan. I get that initial 3 or 4 hours sleep and later in the morning maybe 1 more hour and although it's not enough, sadly I am getting used to it. Could be one of those issues that goes away with time which would be great for both your husband and myself.

    Dry mouth spray
    Yes......same here with the sleep interuption. I have no problem falling to sleep, but seem to always wake up 3-4 hours later. But when I do wake up lately, I've been able to return to a deep sleep in maybe 10-15 minutes. Awakening with a Saharan Desert type dry mouth is an awful feeling, so for a year I used Biotene Spray, but it would burn my mouth, and thus kept me awake for an hour or so. I've switched to Stoppers 4 spray and have it on the night stand next to the bed. It contains no alcohol, which reduces the burning sensation, and allows me to return to a restful sleep. It still doesn't help me to putt better the next day. :)

    Larry
  • Arthur123
    Arthur123 Member Posts: 19
    #10
    CajunEagle said:

    Dry mouth spray
    Yes......same here with the sleep interuption. I have no problem falling to sleep, but seem to always wake up 3-4 hours later. But when I do wake up lately, I've been able to return to a deep sleep in maybe 10-15 minutes. Awakening with a Saharan Desert type dry mouth is an awful feeling, so for a year I used Biotene Spray, but it would burn my mouth, and thus kept me awake for an hour or so. I've switched to Stoppers 4 spray and have it on the night stand next to the bed. It contains no alcohol, which reduces the burning sensation, and allows me to return to a restful sleep. It still doesn't help me to putt better the next day. :)

    Larry

    Stuttering
    lol Larry. Maybe if you stopped stuttering you could putt better. Hey, just kidding. Thanks for the tip on the Stoppers 4. I'll give it a try.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Arthur123 said:

    Stuttering
    lol Larry. Maybe if you stopped stuttering you could putt better. Hey, just kidding. Thanks for the tip on the Stoppers 4. I'll give it a try.

    Stoppers4
    I know that HONDO is a big promoter of that. One of these days I have to order some to see how it helps at night.

    I wish that you could buy it OTC somewhere, that's my biggest procrastination for not having it already...

    Too bad Bass Pro Shop, Cabela's or Gander Mountain doesn't sell it, I would already have it, LOL....

    JG
  • Greg53
    Greg53 Member Posts: 849
    #12
    Skiffin16 said:

    Stoppers4
    I know that HONDO is a big promoter of that. One of these days I have to order some to see how it helps at night.

    I wish that you could buy it OTC somewhere, that's my biggest procrastination for not having it already...

    Too bad Bass Pro Shop, Cabela's or Gander Mountain doesn't sell it, I would already have it, LOL....

    JG

    Melatonin
    Arthur,

    Don't know if you have tried the melatonin, but it works great for me. I still get up once or twice a night to use the facilities but I'm usually sleep walking and go right back to sleep. 17 months post tx here. Like the saying goes - everyone is different, but I love the stuff. It's OTC and I think I read on this site about some studies being done on this as being an anti-cancer supplement (sorry, got chemo brain too, so don't remember exactly where that was posted).

    Hope you get some good shut-eye soon!

    Greg

    (Skif - I know I'm feeling good these days as most of my time is spent fishing so my wife just confiscated my credit cards to cabellas and bass pro - lol)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Greg53 said:

    Melatonin
    Arthur,

    Don't know if you have tried the melatonin, but it works great for me. I still get up once or twice a night to use the facilities but I'm usually sleep walking and go right back to sleep. 17 months post tx here. Like the saying goes - everyone is different, but I love the stuff. It's OTC and I think I read on this site about some studies being done on this as being an anti-cancer supplement (sorry, got chemo brain too, so don't remember exactly where that was posted).

    Hope you get some good shut-eye soon!

    Greg

    (Skif - I know I'm feeling good these days as most of my time is spent fishing so my wife just confiscated my credit cards to cabellas and bass pro - lol)

    Gotta Do What You Gotta Do....
    LOL, my neighbors know me well.....

    So far I've gotten two $50 Bass Pro gift cards and two 12 packs of Corona....

    Oh, but of course that was earned for dog sitting (one neighbor young couple), and a little yard work for another neighbor lady, LOL.....they know I'm easy.

    JG
  • osmotar
    osmotar Member Posts: 1,006
    #14
    Skiffin16 said:

    Gotta Do What You Gotta Do....
    LOL, my neighbors know me well.....

    So far I've gotten two $50 Bass Pro gift cards and two 12 packs of Corona....

    Oh, but of course that was earned for dog sitting (one neighbor young couple), and a little yard work for another neighbor lady, LOL.....they know I'm easy.

    JG

    LOL
    My family used to give me shotgun shells for gifts, I shoot clay targets
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Skiffin16 said:

    Seems Common
    It seems to be common....not sure if it's the low saliva at night, added fluids..or a combination of many things.

    But I know myself and at least Sweetblood (Dawn) have similar sleep habits..

    I rarely get more than 3-4 hours of good sleep, but I do go back to sleep for a few more once I'm up and take the dogs out. They seem to think they need to go potty if they hear me up, LOL...

    Best,
    John

    Hi Arthur
    Like John I wake just about every 3 or 4 hours too, never a full night sleep, but when I lay back down I go right out again. I tried a lot of things for it but did not find anything that really worked, and I too don’t want any drugs for it. Just a part of my new normal as I take it.

    Wishing you well
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    Skiffin16 said:

    Stoppers4
    I know that HONDO is a big promoter of that. One of these days I have to order some to see how it helps at night.

    I wish that you could buy it OTC somewhere, that's my biggest procrastination for not having it already...

    Too bad Bass Pro Shop, Cabela's or Gander Mountain doesn't sell it, I would already have it, LOL....

    JG

    Stopper 4

    Oh yes the best stuff for dry-mouth, I use it at night and helps me from that ever hour waking up thing and drinking water.

    Hope it works for you.
    Hondo
  • Greend
    Greend Member Posts: 678
    #17
    agree melatonin
    I would take 4 tablets and they worked very well. Dry mouth - 15 years and I still carry my bottle everywhere.

    Denny
  • Arthur123
    Arthur123 Member Posts: 19
    #18
    Greend said:

    agree melatonin
    I would take 4 tablets and they worked very well. Dry mouth - 15 years and I still carry my bottle everywhere.

    Denny

    Melatonin
    It's Melatonin tonight. If that doesn't work I'll try the shotgun shells. Lol. Kidding of course but I do need a good nights sleep.

    Thanks for all the suggestions.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #19
    Greend said:

    agree melatonin
    I would take 4 tablets and they worked very well. Dry mouth - 15 years and I still carry my bottle everywhere.

    Denny

    I wake up once an hour, I am
    I wake up once an hour, I am like a walking zombie. :( I use biotene and have water by my bedside. I have three different biotene products by my side at all times and I am still drier than dust. I even have a humidifier in my room. I am not sure if it will get better for me or not. I'm over two years out, and I am missing my left submandibular salivary gland, which they took out during the neck dissection.

    About once a month when I get desperate for sleep I will take benedryl, which helps me to get a block of 3/4 hours at once. It sucks. I'm exhausted, and I really think if my mouth and tongue didn't dry out so bad I would be getting uninterrupted sleep.
  • Arthur123
    Arthur123 Member Posts: 19
    #20
    sweetblood22 said:

    I wake up once an hour, I am
    I wake up once an hour, I am like a walking zombie. :( I use biotene and have water by my bedside. I have three different biotene products by my side at all times and I am still drier than dust. I even have a humidifier in my room. I am not sure if it will get better for me or not. I'm over two years out, and I am missing my left submandibular salivary gland, which they took out during the neck dissection.

    About once a month when I get desperate for sleep I will take benedryl, which helps me to get a block of 3/4 hours at once. It sucks. I'm exhausted, and I really think if my mouth and tongue didn't dry out so bad I would be getting uninterrupted sleep.

    Sleep
    I'm pretty much in the same boat as you sweet. What say we both try the melatonin and see how we do?

    My Oncologist says that this is a pretty common side effect. The good news is that he says there will be significant improvement. The bad news is he says it could be as long as 5 years post treatment before we see it. Oh well. I have no complaints. Issues, yes but complaints no. :)
  • Hondo
    Hondo Member Posts: 6,636 Member
    #21
    Arthur123 said:

    Melatonin
    It's Melatonin tonight. If that doesn't work I'll try the shotgun shells. Lol. Kidding of course but I do need a good nights sleep.

    Thanks for all the suggestions.

    Melatonin

    I tried it once, did get some more sleep, but the side affect for me was I was sleepy all the next day. So be carful on how much of it you take the first time.

    Hondo

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