Trouble Sleeping

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Back in early January of this year I was diagnosed with cancer of the right tonsil which had also spread to the lymph node on the right side of my neck. Thankfully the prognosis was curative so throughout my treatment I remained focused and driven. The 7 week treatment of 35 doses of radiotherapy and 3 full days of chemo was grueling. Unfortunately at the end of week 6 I was taken into hospital with neutropenic sepsis which resulted in the final session of chemo being cancelled. I somehow managed to completed the remaining 5 radiotherapy sessions whilst undergoing treatment for NS. The following 2 weeks I found very hard which I had been advised by the team would be. I was fortunate to have my PEG line removed and have been eating solids for 4 weeks now. The saliva in my mouth has thinned right down but during the night I am having real issues sleeping. I manage to go off to sleep quickly but consistently after around 2 hours I wake up in a bit of a panic. Throughout the day I am able to swallow but when I wake up in the night it is as if someone is holding my tongue and preventing me from being able to swallow. My airway feels restricted but I can breath. It is as if my mouth dries out and the back of my mouth sticks together. I try gargling water to try and moisten and free up my throat. This worries me as sometimes I choke and have to cough up the water. After several attempts I can swallow but my throat feels restricted for the rest of the night and I'm lucky to get back off to sleep for 3-4 hours. I eventually go off but again then only for a couple of hours before getting up. I would love to be able to sleep through and wondered if I could be doing something to help this. I have always been a snorer and breathed through my mouth prior my diagnosis so it has been hard for me to breath through my nose during and after treatment. I am hoping this dryness will pass over time otherwise I do not know what I will do to help improve my sleep? It is starting to get me down. 

  • Hi Stephen. 
    I dont know if it may help but I’ll tell you what I do. Five plus years out of treatment and I still find night times can be a problem because I mouth breathe. Daytime is fine

    I brush an hour before bed so that I can have a good rinse out with BioXtra mouthwash before bed. I use one xylimelt popped into a cheek and I tape my mouth shut with a little cut down sleep tape down the front of my mouth. There is a post about this in my blog with a little photo of my crinkly face. This usually sorts it perfectly for me. Occasionally I do wake for a drink which I can take in the corner of my mouth through a straw. 
    I keep a bottle of sudofed nose drops for the rare times my nose is blocked. 
    I never managed with any of those gels or artificial saliva sprays you get. I just found they either tasted foul or made my mouth sticky. 
    If you want to try one then oralieve do a good one. 
    Lastly if I get a spell when I’m not sleeping a melatonin gummie sucked in the middle of the night get me right off again 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Stephen,

    Firstly sounds like you are doing really well after such a harsh treatment .Don't worry about missing the last Chemo many of us do for one reason or another.

    My sleep is still awful but as for gagging chocking not feeling able to breathe Ive been there for several months( thankfully not any more).

    I slept on 7 feather &down pillows(now 5) so this helped the mucus or sometimes fresh air ! from blocking my throat .Like Dani I clean teeth and do a thorough mouth wash with Bioxtra put vicks on both nostrils and try to keep my mouth closed took 6mths to train myself to try and breathe through my nose.

    At times an Xymelt used to help, but no I find a bottle of water at my bedside and Orilieve mouth spray does the trick before I close my eyes.

    I have Zopidem sleeping tablets (from my Dr)which I take every 5th night as they totally knock me out  and give my body a restful night.

    Things have improved massively 6.5mths after treatment hardly any issues at night with gagging or chocking now happens occasionally in the day.

    Good luck with the sleep

    Debbie

  • Thank you Dani, I found this really helpful and have started reading through your blog.

  • Hi Debbie, Thank you. The mouthwash I will try. I already as a precaution like you apply vicks to my nostrils. I am hopeful over time as it is still early days for me to get a better nights sleep. Really pleased you are over the worst.

  • Hi Stephen

    I had trouble sleeping for over a year....Biotene Gel helps my dry mouth... .....Short courses of low dose Zopiclone from my GP helped me get some well needed respite from insomnia.....thankfully over the worst now.

    Peter

  • Hi Peter,

    Thank you for sharing. I plan to see my local GP tomorrow to discuss my insomnia and get some help. Pleased you are over the worst.

    Stephen

  • Hi I am

    6 years post treatment 1/2 an xyimelt every night plus have water at side of bed which I rarely need. Yiyr tongue is dry it’s possibly sticking to roof of mouth which is waking you up mine did. Try a spray bottle with water in and spray inside mouth when you wake to start the tongue I sticking then take a sip. It does get better.  Try chewing sugar free gum furine day it helps stimulate the saliva glands. I paid for Auricular acupuncture which I thjnk kick started my saliva. 
    It’s early days for you even though you might not think it. 

    hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Hazel,

    6 years that's brilliant. The idea of a spray bottle is good and my tongue definitely is sticking due to my snoring. I am still doing my jaw stretches as I was fortunate enough not to lose any motion with my jaw. DId you find you was sensitive to chewing gum? I had some and it made my mouth feel like it was burning slightly? I have also realised that I am not able to cope with any spice in my food which is something I loved prior to treatment and hope it is a short term intolerance? It gives me great hope of success seeing you had exactly the same treatment as I have just gone through. I will definitely read through your blog. Thank you for sharing your experience.

    Stephen 

  • Hi Stephen yes took   me ages ti find one I could tolerate then after a few weeks  I couldnt tolerate that  one. Often it’s  trial and error and we spent a fortune some days I could eat things and then the next day I couldn’t it is all part of the course fortunately fingers crossed that you do  get your taste for spicy back. I’m in the small minority that my mouth just cannot tolerate any spice whatsoever which is fine. I can live with that. I can do our automatics so if I make a curry, I do that with cumin and coriander and coconut milk. It’s just not the spice of chilies paprika I can cope with the chewing gum. You can look for some a cinnamon flavour off the top of my head if you go onto Amazon, I think you might find some on there what you need to look for is chewing gum that sugarfree and with xylitol. What I tended to do is you chew the gum and then park it at the top of your gum so you need another chew  and then bring it back down if that makes sense. I iniy ever use half a piece as well. 
    enjoy or endure the blog hope you get some tips. 

    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • DId you find you was sensitive to chewing gum? I had some and it made my mouth feel like it was burning slightly?

    Avoid mint. Amazon has loads that aren’t mint. I gave up worrying about xylitol as king as it’s sugar free. This is my flavour of the month. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge