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Apart From the Side Effects of Radiation Post

Arthur123
Posts: 19
Joined: May 2011

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.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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
Posts: 19
Joined: May 2011

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's picture
robinleigh
Posts: 297
Joined: Mar 2011

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
Posts: 18
Joined: May 2010

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
Posts: 353
Joined: Oct 2009

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
Posts: 353
Joined: Oct 2009

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
Posts: 353
Joined: Oct 2009

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
Posts: 353
Joined: Oct 2009

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
Posts: 19
Joined: May 2011

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's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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's picture
Greg53
Posts: 830
Joined: Apr 2010

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's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

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's picture
osmotar
Posts: 950
Joined: Jul 2011

My family used to give me shotgun shells for gifts, I shoot clay targets

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

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

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

I too am a huge supporter of Stoppers4. Just in out local support group, only one person out of approx. 18 it did not help.

Certainly worth a try.

John

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

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

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

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

Denny

Arthur123
Posts: 19
Joined: May 2011

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.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

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

Arthur123
Posts: 19
Joined: May 2011

I got that same result when taking the Tylenol PM. One was not enough to have any effect. Two pills and I slept pretty good but was like a zombie all the next day. Sometimes now I will take 1 PM and 1 regular tylenol. Helps some.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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
Posts: 19
Joined: May 2011

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. :)

fisrpotpe's picture
fisrpotpe
Posts: 1317
Joined: Aug 2010

I believe this to be the norm of only 3-4 hours and awake we are. Now past 15 years treatment I still do the same. For me I have accepted as a part of the "new normal". Most nights it's a couple squirts of Stoppers4 and right back to sleep.

I have heard a few people share they ended up with sleep apnea and used the breathing machine with moisture and it made a big difference.

Good luck with your search.

John

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