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Anyone else struggling to sleep?

48 REPLIES 48
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Re: Anyone else struggling to sleep?

if anyone finds the podcasts useful can u let me know?
thanks
sue

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Re: Anyone else struggling to sleep?

hello there,
well the 'Mini Chillow' arrived, I LOVE IT ! it definately is not comfy compared to my goose down pillow and its true it does seem to warm up during the night if you keep it under your head all the time, but it works well if left to one side of your pillow and when the heat surges just tug it under your head and bliss .That way it goes cold again (dont ask me how) in between flushes. it has definately stopped me jumping up and rushing to the bathroom , so far so good.
Regards to all. Sue

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Re: Anyone else struggling to sleep?

Sue

yes, I am taking starflower oil because it has double the level of GLA. My chemo hot flushes reduced after two months but then returned with tamoxifen so I am giving it another two months to see if it works with these hot flushes. Not sure if it works or not, but it doesn't do any harm, so I'm giving it a go.

Helen.

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Re: Anyone else struggling to sleep?

Sue - Yes, I have heard about that and it could well be better, but haven't tried it yet. I have been taking EPO for years and I do believe it takes time to work.

What I would like to know is do the flushes and poor sleep improve after stopping the tablets after the five years are up? Maybe the oestrogen level is naturally low then and it makes no difference.

Is there anyone on here who can tell us, please?

Ann x

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Re: Anyone else struggling to sleep?

Hi All,
Just been reading article about Starflower Oil instead of Evening Primrose to reduce hot flushes, evidently Starflower contains twice as much GLA as EPOil therefore twice as effective? Has anyone else heard this? Is anyone taking this ? as it would simple to swop over if it is more effective.
Regards to all ,
Sue

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Re: Anyone else struggling to sleep?

ive also been prescribed 25mg of amatriptalyne at night i take it about 8.30 go to bed as normal 10ish and drift off nicely i can get up for the loo and go back to sleep and i wake refreshed i cant take anything that will klnock me out as my son has seizures and i have to be aware and this little tablet seems to do the trick
sue
ps i also use the podcasts as i find they relax me

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Re: Anyone else struggling to sleep?

Many thanks for the link I'll try it tonight.

x

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Re: Anyone else struggling to sleep?

Hi All,
Thanks for that link Tippy it does work , I will try that one next week !I am in danger of becoming a champion tester of sleep remedies , Night nurse seems to keep popping up , so maybe the week after for that one. I have already started taking evening primrose , but I havent noticed any difference yet , but I think I need to give that a bit of time to kick in. I am hoping something will finally work as I too have 4 years 9 months to go !I will let you know my verdict on the 'Chillow' when it arrives.

Sweet Dreams ( I wish)

Sue

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Re: Anyone else struggling to sleep?

Hi Sue

I use a chillow although I find it a bit hit and miss. I find at the start of night it's so cold my head is absolutely freezing so I have to put three pillowcases over the top of it, by about 4am it's about right and by 7am my head has warmed it up so much it's hotter than I am! Maybe I need a series of them.

I think it helps but only if I lie on my back - in which case I snore which wakes both me and the OH up. I can't win!

I will be taking it with me on holiday next week, though, just to help me get some sleep.

Being knackered makes no difference to how I sleep. As Evie says, nightnurse does work, not sure I could take it (or afford it) for the next five years though. Zopiclone also works.

Four years, eleven months and seven days to go..........

Helen.

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Re: Anyone else struggling to sleep?

http://www.mentalhealth.org.uk/information/wellbeing-podcasts/
hope the link works, even if these just relax u they may help
sue

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Re: Anyone else struggling to sleep?

Have you tried Evening Primrose Oil? Although I wake in the night, I don't get hot sweats. I am just too warm, which is not as bad.

Ann x

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Re: Anyone else struggling to sleep?

Hi Sue,yes i use a chillow pillow and I swear without it I would get zero sleep.I tend to fall asleep on my ordinary pillow,wake up with a bad sweat and move over onto chillow,hopefully I tend to finally go back to sleep.It,s not much fun getting up for work after having disturbed sleep,but I am getting used to it now.Only 4 and a bit more years on Tamoxifen,ha.

Good luck and enjoy your chillow,even if you only get a few more hours sleep.

Ann xx

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Re: Anyone else struggling to sleep?

Hi all,
It is a comfort to me that everyone seems to be in the same boat on the 'sleep problem'. I have now just sent off for a 'mini Chillow' I will try anything, has anyone else bought one ?
regards to all ,Sue

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Re: Anyone else struggling to sleep?

Pauline have you tried nightnurse?
No kidding it works and i managed to fall asleep really nicely on about 15mls and i didnt feel too bad in the morningh either.

I used it for about 4 weeks every day as i just couldnt sleep after it all ended. Its not much and it did help.

I now run every evening and find that makes me sleep as i am so physically knackered ( and ive run out of nightnurse!)

good luck

S
XX

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Re: Anyone else struggling to sleep?

Hi everyone

Tippy would appreciate the link that you suggested as I will try anything to get some sleep, will also see if i can get the tesco herbal tablets as I've tried everything else. Ended up taking a sleeping pill last night as I woke up at 11.30 (had one hours sleep) and was just lying there, so was knocked out till 5 this morning, but it makes me feel so sluggish in the morning.

x

Re: Anyone else struggling to sleep?

Just thought i would add to all your comments.
I am having taxotere and am lucky to get 4 hours sleep especially with all the steroids. Anyway i use Tesco(!!) sleep aid tablets, 2 a night, one doesn't work and find i have a bit more sleep but good quality, sound sleep.
They are also good the few nights before chemo when you cant get to sleep because of the fear!

Checked with hospital pharmacist and they said they were ok.

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Re: Anyone else struggling to sleep?

I hve a least 4 hours sleep then i wake up since starting the Rads on Monady. I dont worry so it must be the rads xx

Re: Anyone else struggling to sleep?

sleep?????????? whats that???????? note the time 1.45 AM ladies.......another sleepless night. Given up trying now, got mug of haulicks and a book. Sssshhhhhh sleep well everyone pauline xxx

Re: Anyone else struggling to sleep?

I had terrible problems after I finished treatment and I was waking up at the same time every night convinced I had forgotten to take some medication. I would be going through the bedside cabinet convinced if I didn't get it there would be really bad consequences and my OH would try to calm me down. It then escalated to waking up thinking I was terminally ill. By that point I had been referred for counselling as I was also having panic attacks.

I rearranged the bedroom furniture as I felt I was associating it with being ill, then I changed the curtains. I started putting on a relaxation CD very low in the background at bedtime; I also lit a perfumed incense cone. It actually started working and after a couple of weeks I was sleeping.

There is a Professor from the Edinburgh Sleep Centre who used to write a column in the Mail on Sunday. One week it was about what you should do if you wake up with bad or scary thoughts and the advice was to tell them in your head they were not welcome and to say to them they could leave as easily as they came. I was really sceptical, but if you can get the focus right it does actually work. I'm now able to tell them to get lost and fall asleep again.

Re: Anyone else struggling to sleep?

Hi Pauline,

No problem, glad the helpline were able to assist. Take care.

Jo, Facilitator

Re: Anyone else struggling to sleep?

Thanks Jo just done it. It was a help as the lady did say not to take any 2 weeks before surgery and to be careful if taking ADs. I am going to ring back after my surgery for her to check out the full list of ingredients, so yes it was worth a call thanks Jo, Pauline

Re: Anyone else struggling to sleep?

Hi Pauline,

If you give the helpline here a ring I'm sure they'll be able to help with your questions. Lines are open until 5pm today, calls are free, 0808 800 6000

Kind regards,
Jo, Facilitator

Re: Anyone else struggling to sleep?

well just to update you all. took sleeping tabs for just 4 nights like doc said and yes i got broken sleep, but it was at least sleep. great you think but....... no tablets and last night, i'm not kiddin you i am sure i did not sleep at all!!!!!!!!!!!! So whats the point of the tablets??? i need to persue some of the more natural stuff and going to try listening to something tonight. Does anyone know if it is safe to take natural sleep remidies eg nytol?
Well all i can say is i hope i sleep tonight, you would think so wouldnt you.

Thanks for your advice, we could all o with loggin on here at the same time, during the small hours. Keep each other company lol

Sleep well everyone, luv Pauline xxx

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Re: Anyone else struggling to sleep?

sorry forgot to say they were recommended by the psyco-oncologist at christies
sue

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Re: Anyone else struggling to sleep?

i was recommednded some relaxation stuff that can go on ipod/mp3 players they are a fre download and i have used them each one is quite short(i think the longest is 9 mins) but they seem to work.ive not posted the link but if anone is interested i will
sue

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Re: Anyone else struggling to sleep?

Hi everyone - can confirm good reports for Coenzyme Q10 - just a word of caution - not cheap unfortunately, it all adds up if we were to buy all the different things that are recommended for our various symptoms. I've just bought my second order from Higher Nature £29.85 for a months supply. Worth mentioning also that the dosage recommended for BC sufferers ( in the write-ups not on the box ) is significantly higher than for "normal" use - hence it all adds up.

Shame really because lots of "people who know stuff" are really singing its praises.

Lynnx
ps I haven't researched it specifically in relation to sleep, just BC recovery and prevention generally

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Re: Anyone else struggling to sleep?

Hi all ,
I wonder how many women are out there all awake at the same time in those dreadfull early hours, creeping around so as not to wake the household!!
I have tried Tesco herbal sleeping aid this week , 2 tablets , no morning after sluggishness and I managed to get 5 hours unbroken sleep , unheard of since DX! Dont know how long that will last as I do believe you get used to these medications very quickly. Is anyone taking CQ 10 Enzyme with Tamoxifen, there have been very good write ups about the benefits for BC sufferers.
Regards to all.

Re: Anyone else struggling to sleep?

Having one of those fitfull, tossing and turning ones myself tonight...I'm getting them less and less but they're still a pain!! The Mp3 thing can and has worked for me.. On my iPhone right now. Glad I'm not working today, but got a list of jobs as long as your arm!!!

Oh well hey ho!! Hope you all get some sleep soon...:-)

Hugs
Fiona xxxx

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Re: Anyone else struggling to sleep?

Yep I got up at 5.40am still can´t go back to bed I feel like my eyes hae been stapled open xxx

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Re: Anyone else struggling to sleep?

Im glad to hear Im not on my own with the sleeping problem...Im exactly the same, started Tamoxofen in February and I have been suffering from night sweats and trips to the loo ever since. It's now 5am in the morning, Ive been awake since 3.30am, I know I will get back to sleep for a couple of hours but it's not the same as sleeping all the way through. Im also tormented with nightmares. I have them every night without fail..I used to love my bed 😞

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Re: Anyone else struggling to sleep?

Slightly off tangent suggestion.
I have had chronic pain for 17 years.. not cancer related ... and have had trouble sleeping. Lying awake worrying about not sleeping just makes it worse.
My elderly mother came up with a great suggestion - listen to audio books. Now I plug in my MP3 and start listening to someone reading a story. I usually fall asleep and miss most of it but if I wake with one of those panicky thoughts I push them away by concetrating on the story again.

Worth a try

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Re: Anyone else struggling to sleep?

Have you tried a Chillow? I bought one from Amazon and althouh I still wake in the night, I seem to go off again quicker. The chillow is cool not cold. It was £25. I would so love to have a solid 8 hours like the olden days!

xx

Re: Anyone else struggling to sleep?

Hi
Since starting tamoxifen I never get a night's sleep without waking up with sweats, back pain or to go to the loo! I am working full time and lead a busy life so its not easy. I use a blend of aromatherapy oils every night on my skin and on the pillow and they help me get off to sleep though I'm still looking for the answer to the sweats! I also do tai chi and yoga so tend to spend less time feeling anxious about not sleeping! I resorted to sleeping pills for a while but found that the 'sleeping pill hangover' was just as bad as being tired from not sleeping!. My advice would be: get into a state of relaxation before trying to sleep (Glenn Harrold self hypnosis CD is very good); use aromatherapy oils (roman chamomile, neroli, lavender, patchouli, ylang ylang are all good at night and try not to get too anxious about it.
alex
x

Re: Anyone else struggling to sleep?

Thanks ladies, looks like its a cmmon problem nd it seems to be attactched to tamoxifen too. It is a relief to find i'm not the only one with this problem.

Been to my docs today and she agreed to give me one lot of tamzipan for me to use 3 or 4 days at a time to try to establish a sleep pattern again. She has also told me to try all the usual...reding, warm bath, hot drink, decaf drinks,no alcohol and lavinder. I will try these as i dont intend to be on the pills for long and will need to help keep the routen going.

I am so desperate to get sleeep i am willing to try anything.

Hopefully this thread will help others too with the same problem and i hope you girls find some answers too.

Thanks again everyone, sleep well, luv Pauline xxx

Re: Anyone else struggling to sleep?

I am having dreadful problems with the steroids - have just finished 3xFEC and am dreading moving on to Tax as have to double the steroids. I have been taking Nytol this week - and it does work, but not sure if it will work with the tax. Also a bit worried about being dependent on them - but was getting no sleep at all, so had to try something. Will be moving on to Tamoxifen eventually - really disappointed to hear this is yet another horrible SE. Sigh.

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Re: Anyone else struggling to sleep?

I have had trouble sleeping since diagnosis, at which point I stopped taking HRT and am now on Letrozole. Apart from the stress of it all, I think it is mainly the low oestrogen that is causing it. I get off to sleep ok but wake every hour or two - too hot, covers off, back to sleep, too cold, covers on.......

I have taken Evening Primrose Oil for some years and I think that has helped, in that I don't have hot flushes as such, ie no sweats, but I just get too hot. I have also found that anxiety makes it worse. If I get worked up about something during the day, I suddenly get too hot.

Ann x

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Re: Anyone else struggling to sleep?

You have my full sympathy! Hot flushes started when started tamoxifen and Goserelin implant (Zoladex). Doc says flushes more likely due to Zoladex than tamoxifen and to try evening primrose oil. Can't comment if it works as I keep forgeting to take it! Like you, getting to sleep is no problem, but few hours later covers off and up to loo. Always up at 4.30, covers off and up to loo! Find it hard to get up in morning to get child to school! Tierd through day, always nodding off, feel like I'm wasting my life snoozing! Am convinced tierdness is due to broken sleep and not recovering from chemo and radio! Like you, otherwise feeling fine, glad its not just me!

Sarah

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Re: Anyone else struggling to sleep?

Yep, me too. I had the hot flushes start while on chemo, they diminished in Jan and I had two weeks almost flush free- heaven, then started tamoxifen and they started all over again, and getting worse each night. I get to sleep fine each night, but wake every hour and sometimes more frequently, really hot etc. Always get back to sleep no problem only to wake an hour late and again and again all night.

Venlafaxine nor any complementary therapy is doing any good and I would kill for a good night's sleep. Zopiclone (and night nurse!) helps me stop waking so much but the GP has refused to prescribe it to me saying I'll get addicted (so what?). I am so tired through the day I can barely think.

Otherwise feeling fine. I'm doing loads of exercise and it makes no difference.

It's miserable.

Helen.

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Re: Anyone else struggling to sleep?

Hi Olisnana,this sleep thing is such a pain.Like all of you girls,covers on covers off,up to the loo,covers on etc.......
This Tamoxifen has a lot to answer for,lol.

By the way,Ad stands for anti depressants.

Good luck with your sleep pattern,I live in hope.

Ann x

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Re: Anyone else struggling to sleep?

HI ALL<<br /> Dx in November,lump + SNE+15 rads+ tamox, now seem to have slipped into sleep routine of ,tired at 10.30, go to bed, sleep till 1.30 wake with raging hot flush+needing loo, straight back to sleep ,wake 4am with ,yep you got it, raging hot flush again+needing loo, back to sleep till 6am yet another hot flush +needing loo! now too late to sleep again and lie awake until time for work. Its funny how the body just seems to accept this pattern , but i would pay for a full nights sleep free from heat, does anyone know if this is for the whole 5 years of tamox or will it settle? i have tried boots sleep aid and syndol and nightnurse, (not all together mind you)nothing seems to break the cycle, bit reluctant to go to doc as had enough of hospt/surgery for the moment, Also can anyone tell me what the abbreviation AD is ?

Re: Anyone else struggling to sleep?

I've had problems on and off since dx last July. I resorted to Zopiclone before my mx and post surgery took Boots tension headache relief which combined paracetamol for pain and an antihistamine or something which is a muscle relaxant.

As Evie finds with her running, if I have a good walk or pilates session, I get to sleep more easily. I wake up in hot sweats up to 4 times a night - covers off, covers on - drives me nuts. Getting to sleep I often use relaxation techniques - count breath in for 5, out for 5, lengthening it until......

I'm yawning now, so off to bed...

Re: Anyone else struggling to sleep?

it sometimes takes me hours to drop off, even if i'm really tired. started tamoxifen in december and sleep problem has been since then.... trouble is my 17 month old is awake and bright as a button and rattling his cot bars at 6am. bugger. x

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Re: Anyone else struggling to sleep?

I'm the same as you Theresa, wait til I'm dropping and then go!
Usually can then get to 6ish. Mind you today I've been up since 3.30!!
I find my body thinks it wants to sleep around 2.30 in the afternoon but if I try can't drop off, the body is tired, the eyes are tired and the brain just keeps skipping along!

Katie

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Re: Anyone else struggling to sleep?

Hi All

Feel for you. I have nights when I don't really sleep at all. I go downstairs and read, drink too much tea and cuddle the cat. But I count myself lucky that I am not having to get up at 6 in the morning for work. If you do have to then god help you. I find that one bad night is usually followed by a good one. Night nurse knocks me out flat! Can't face real sleeping tablets.

Love to all

Dilys

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Re: Anyone else struggling to sleep?

I've got in the habit of staying up until i am tired... so most nights it is about midnight... but i do then fall straight asleep... if i went up at 10.30 etc i would be awake for hours...

Theresa x

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Re: Anyone else struggling to sleep?

Hi Pauline,

I never had any problem sleeping,until i was diagnosed with bc.I wake virtualy ever night, and have real trouble getting back off to sleep.
I have woke many times in a cold sweat which is horrible,but since taking ADs this thankfully is getting less frequent.
I personaly think its the anxiety and turmoil brought on by this dreadful disease.Lots of Love Lesleyx

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Re: Anyone else struggling to sleep?

I could not drop off however tired i was so i took nightnurse for a week and that helped!! Only problem being soon as i stopped it i then struggled to go to sleep oftehn taking 3hrs to drop off.
I have now started running and i have no idea if it is a coincidence but i am falling asleep much much faster!

good luck pauline. its bloody irritating!

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Re: Anyone else struggling to sleep?

i was until the psycho - onc prescribes amatriptalyne 25mg i take one a 8.30 each evening and i drift off i can wake for the loo in the night but i can drift off again without problems, the tablet also helps with joint pain caused by letrozole
sue

Anyone else struggling to sleep?

Hi there just wondered if it's just me or are there others out there that cant sleep at night?

Last night i went to bed at 11.30 and was still awake at 6.30!!!!!!!
I then managed to drop off and dosed till about 11.00am. I was takin a sleeping tab up until this week but my doc doesnt want me to take them with the AD. for months i have gone to bed, dropped off, slept for 3 hours then wake up, lay awake for 3 hours then start dosing as it's time to get up.

I am due to go back to work soon so this is not good.

Last april i was dx with grade 3, vascular invasive bc. had mx, chemo, rads and now on tamoxifen. I am also takin ADs for the hot flushes. I am off to the docs tomorrow to see if she can give me something short term to break the cycle.

I just wondered if this is normal and if anyone can help?

Thanks Pauline x