I cannot sleep.

DonnaDio

Such a pain with sleep!!!  The more recovery i have from the surgery, the more strength i have in fighting the anxiety that goes with it all and especially knowing chemo is next. I stopped the Ambien CR ( other Ambien kind only had me sleep 2-3hrs), for 4 nights now. Using Calm's Forte(over the counter) and Melatoin tablets. I was tired of feeling drugged from the Ambien the next day.

 Also, hormones can wreck havoc on sleep too.. who knows where one is after a surgery?!

Healing thoughts;

Donna

BustersMom

Hello Ladies,

I'm so glad I found this thread!  I've been going a bit nuts with the sleep problems as well.

I'm like some of you - I fall asleep, but then awake at about 3am & that's it.. I'm up.    Sometimes if I lay there long enough I will fall back asleep, but it takes at least 2-3 hours. 

Right now I'm not working, but I will be soon - I hope to get the sleep problems under more control before then.

I was taking Lunesta, Benadryl, and Klonopin pretty regularly - switching between them all, but now I'm trying to stay away from the meds, except about 1x per week when I just want to sleep 8 hours.    

I tried Effexor and Zoloft (hoping it might calm the active mind/anxiety) but the SE's were too tough. 

So now I'm just on my Tamoxifen.    

I'm going to check into the Calm's Forte, and also the melatonin.   Thanks for putting the info here on the board.

Here's hoping that we can all get some good sleep

Juliet

firstmate

What is the dose of the Melatonin you are all taking?

DonnaDio

For the melatonin .. now one 3mg tab.. when i started i was taking two. I take 2 Calm's forte and it helps with the melatonin. Getting off the Ambien CR was my issue as it made me too icky the next day. Working so far, wake up but not for long.Take a good calcium powder and magnesium also.

Juliet...how are your hormone levels? Not sure, but that can cause alot of havoc. Being on Tamoxifen, are there any side affects to it for sleep?? Excercise or walk during day may help , it does for me but the waking up for me like that happened alot last year and it was adrenal andhormone related? For me anyway!Feel for you!

twirlgirl

Donna~ good to hear you are getting some sleep w/o the Ambien...slowly, slowly!

I hope it just continues to improve until you sleep through the night

How is everyone else doing with the sleeping?

leaf

I'm doing fairly well (here I am, on the boards in the middle of my sleep period.)  Well, its the perception that counts, right?

I find intentionally physically checking if I'm tense anywhere, and purposefully relaxing each area of my body, helps me.

Analemma

Melatonin dosage ---- I've heard three mg for sleep, and 15-20 mg to help prevent brain mets.

I take three 5 mg tabs, time release, but I had to work up to that much.  The vivid dreams are the s/e that was bothersome at first, after about two weeks they go away.  I also take 2 mg Lunesta, and a Benadryl.  I sleep like a baby, for the first time since I was a preteen.

DonnaDio

twirlgirl!!    just when i thought it was all working.. wide awake at 1am last night and no way could i fall back to sleep. had takened three calms forte an d2 melationin 6mg total. i ended up taking an ambien (regular one not CR).. so frustrated to know what to do to get a  restful ningt sleep. Walk each day, keep busy and still no good rest that i feel rested. Maybe increase the melatonin???

Sleepless in Chicago!!!

Donna

mzmiller99

Donna - Boy, I know what you mean!  I'm getting so I hate to go to bed, because I know it'll be a struggle. 

What annoys me is to fall asleep - zap!- and then moments later, have a heart palpitation and I'm startled wake and then, it's nearly impossible to fall asleep again. 

Oh, yeah, and the 2-3 AM flopping frenzy...first this way, then, that way, over and over.  I'd love to have a video just to see how many times I flip-flop before I can settle down again.

BustersMom

Susan (mzmiller) - heart palps!! Ugh.  I've been having them every day for 4 years now.  They suck.

Donna aka Sleepless in Chicago - I've heard several Tamoxifen girls complain of insomnia (mostly due to hot flashes) - but I'm really not having flashes.  I've been a horrible sleeper for years, but it's worse now, for sure.  Not doctor talks about checking my hormone levels.  Do you think that's something to ask about ?

Sorry to hear you had a bad night last night     

I actually slept about 6 hours, which is manageable, but I'm still really tired.  I need at least 7 to feel good.

Juliet

mzmiller99

Juliet - is Buster your avitar?  Is there anything to be done with the palps?  They're really annoying.  Unless, they're caused by Dave Matthews!!  I worksummers as a back stage security guard at a concert arena, and everytime he'd speak to me, my heart would just about go into defib!!  OMG to be a young chickie!

twirlgirl

Donna! I know so well how frustrating it is! Try to be patient with yourself...it takes time and recovering from cancer is no picnic, as you know. I think our level of anxiety is elevated and hard to control. I really believe that working on those things that help you emotionally will aid your sleep...like the exercise, meditation or prayer, yoga, bio-feedback, journaling.

I have a rough night here and there, it's not smooth every single night. But it gets better little by little. Are you taking the Natural Calm at bedtime?

Are you taking the TIME-RELEASE melatonian??

hope things keep improving hang in there!

artsee

Well, I'm totally convinced that anxiety,sleeplessness, palpitations, all go hand in hand.There are just too many of us that have the same thing going here. I think also Twirlgirl is right....It's going to take time for our minds to get further away from this crap before we feel comfortable.

I've switched to decaf coffees,take Ambien when I can't sleep try and think positive thoughts and pray  a lot. I pray that God will heal us all very soon.

Artsee

BustersMom

Susan, you are too funny!!!  And how very cool to work backstage at a concert arena. 

And yes, Buster is my avatar.  He's my little baby

As far as the palpitations go - nothing has helped me. I went to a cardiologist & they show up on my EKG.   Had a stress test & all that - and they declared the palpitations as "benign".   

Sometimes I get a bunch in a row, and that's scary. 

I tried taking a betablocker - that helps some people - but couldn't handle the SE's long enough to see if they helped.  I tried not drinking, no sugar, no preservatives....   crazy.    I do notice that some things aggravate them though - like additives in some foods. 

Long story short - looks like they are here to stay.  Though they may disappear after meno, from what I've heard.   

I gave in & took a Klonopin last night & slept 7.5 glorious hours.  

Hope you all have a good day... Juliet

DonnaDio

I wrote a HUGE reply here and it was LOST!!!!! Soooooo, quickly,.....

twirlgirl...will check into the time released melatonin!!!  took 3 3mg last night and it was better and one Calm's Forte. I did not order the Nature;s Calm just yet.  Am taking a really good Calcium and Mag powder by Isotonix and do not want to mix yet. take natural magnesium caps at night also. DO journal and pray . Am cleared for Yoga for Monday!!!Thanks for all your great input and suggestions. You are right, it is a process each night!!!!!

juliet... lol.. i know. it is a tough time with all of this!!!  I  do not have hot flashes either!!!!Ask your DR. if checking hormone levels would be advantagous for you.Personally, if out of whack in that area, it causes sleep issues. But then i wonder, what can they do about it being with BC???Like Artsee said, all of this seems to go hand in hand..Staying faith based also helps as fear always seems to creep in at night!!!My anixety it the thought i still will have to go thru chemo!!!

Juliet.. Heart palp's like that have to cause havoc.Does breathing excercise help when it hits??? Glad the klonopin helps!!!!

Susan..   tonight when you have the dread of goin to bed, think of me and i will think of you!!!

HUGS,

Donna

artsee

Buster.....When I get stressed I get the palps. Three years ago when my husband had a heart attack I got them big time.

Had the stress test and the whole nine yards, could find nothing. My Dr. prescribed blood pressure pills to help regulate the beat and then I could go off of them. I still have a huge container full of those pills but now am afraid to mix anything since BC. They aren't too bad but still notice a few skips throughout the day and night. I have stopped drinking caffeine this week, see if that helps, along with trying to stay calm.

Yes, ladies , It's not easy being US!

Artsee

mzmiller99

Oh, crap...just lost the response to you, Donna!  What the devil happens to these flying fickle fingers of mine?? 

Anyhoo, we can be "Sleepless in IL and NY"!

Cather1ne

I never in my life had a problem sleeping and now it isn't as bad as some of you, but I find I am waking through the night every night, sometimes hourly, sometimes at around 3-4 for a long time.  I feel stressed and thoughts of my treatment return like a nightmare.  To control this as best as I can (because I refuse to take further meds) I count, not from the number one, but select a high random number like 1,567 and count upwards from that.  I find it incredible in controlling my negative thought reaction and often I sleep quite quickly after starting to count.

DonnaDio

Susan..   I did think of you as i woke up around 1am and flooping around. started a tune in my hear...FLIP FLAP, when am I going to CRASH..lolol. Maybe we could start a song from the sleepless states we are living in!!!LOL!

 We can relate Cather1ne..it is a challenge!!!i am in a thought process wondering how my upcoming chemo treatment~~~!!!Nothing more anxiety ridden to me than that as i never thought i would do it!!!!AND i have to now.

Be well ALL and know we shall get thru this together..GROUP HUG....lol..

Donna

BustersMom

Good morning ladies! 

Wow I got lucky, somehow I managed to sleep on & off for about 8 hours.  Now - to just get a solid 6, 7, or dare I say 8 hours of sleep without being awake for hours in between...   now that's what I wish for someday.

Catherine - that's a great method to use to fall back asleep!! Your sleep problem sounds very simliar to mine, as far as a pattern.    One other thing that seems to help me is to do deep breathing & counting at the same time - almost like meditating.  Sometimes it puts me back to sleep (sometimes not). 

Artsee - I hope eliminating the caffeine helps your palps.   When I get stressed, I definitely get more of them too. 

Donna - my fellow IL gal....  when do you start chemo, or is that decided yet ?   (hug hug hug) back at u!!!

I've been thinking - how do people like us know how much sleep we "need"?  They say everyone is different, but the average adult needs 7-8.   But we all sleep so poorly - how could we ever truly guage our sleep needs?    

Anyway - enough babbling from me    I hope everyone has a nice Friday - feel well, and let's all hope to sleep well tonight.

Juliet

tami48

Feel like crap!  I didn't sleep well last night and I took my Lunesta!  I wonder, could it be that I was thinking about vacation....we're leaving in a few minutes.  Yeah!  I'm so ready, maybe I'll get some sleep tonight after we're there.  Oh no, just remembered, I did have a cup of coffee around 8pm!  I bet that was the culprit!

And yes, I'm taking my laptop!

Hope everyone has a wonderful and restful weekend!

tami

roachrp

since dx in 1997 i have taken ativan every night, 1/2 mg upon original dx, and now 1 mg per night since mets dx, along with my allergy medication, zyrtec.  no sleep problems since.  without the meds, it is just to hard to turn off the brain.  good luck.  hope you find some sleep.

firstmate

Last night I took Ativam 1 mg, 3 Calm Forte and Melatonin 3 mg.  Still couldn't sleep and had to take an Ambien.  Only slept for 4 hours.  I have tried meditation, soothing music, sleep machine (sounds of rain, surf, etc).  NOTHING WORKS!  I am going crazy.  My therapist thinks I have sleep anxiety.  Duhhh!!! No kidding!

twirlgirl

Firstmate...I am so sorry to hear nothing is working! Does your therapist have any suggestions on how to treat "sleep anxiety"??  It's a vicious cycle, often...so tired but cannot turn off the brain and the more you worry about falling  sleep, the harder it is!

I am sure you are tired of suggestions that don't work for you either. Try not to be too hard on yourself with the not sleeping. You are going through something so intense. It's difficult not to panic.\

Something that helped me, I forgot to mention this. When I am so anxious I cannot fall asleep, I have a little trick. This seems to work best when I have already taken everything else and the thing keeping me from sleep is fear, panic, anxiety...esp about the cancer. I get worked up and freak myself out. Then, I have this tiny icon I got in Greece on a wonderful trip pinned to the corner of my pillowcase. The woman who sold it to me explained it would protect me. Silly, really. I am not even a Christian. But holding on to that tiny icon when I am alone in the dark in bed -that has helped me calm down and sleep. Touching it brings me immediately back to that little shop in Athens and my wonderful trip.

Perhaps there is some small comforting object or ceremony you can make for yourself. Just a random idea. I don't know what else to suggest...

I wish you and everyone else sweet dreams and more sleep, good sleep, healing sleep...

BustersMom

Tami - bon voyage! Have a great trip.

roachrp - glad the ativan works for you without problems.  I took xanax (similar drug) daily for a while & my body decided it loved it too much... if I tried to skip a day, I went into almost-convulsions.  That was scary!!    I ended up having to wean off very very slowly.....   now I can take Ativan, or Klonopin occassionaly & it does help a lot.

FirstMate - ohhh, I feel bad for you.  All of those sleep-aids & still only 4 hours. I'm so sorry   that stinks!!!  

twirlgirl -  I love your story about the icon.  That's so nice that it helps to calm you, give you pleasant thoughts & help you to drift away to sleep.   Very nice.

tea42

Hi Ladies,  I am new to this board, but not new to cancer. I'm actually 3 years from my diagnosis next week.  I'm so glad I found this thread.  My sleep problems started along with my diagnosis and treatment and just keep getting worse.  I am doing ovarian suppression and taking tamox.  As I read all your posts I thought wow, I'm not the only one.  My oncologist doesn't really believe in sleep medication so he keeps on encouraging me to just hang in there.  Easy for him to say. I have never heard of Calm's Forte before. I'm going to get some tomorrow and give it a try. Thanks!

tami48

tea42 - Welcome!  It does help to know that your not the only one!  Like you, I was so glad when I found this thread! 

BustersMom - Thanks!  I'm sure we'll have a wonderful time.  It already feels great just being gone and knowing I have a full week of nothing but relaxing and fun!  Oh, let's not forget the shopping!

twirlgirl - Such a lovely story about your icon from Greece!  I'm so glad it helps when your anxious and having a hard time falling asleep.  Sweet dreams!

Firstmate - So sorry your having such a hard time sleeping.  It really sucks that nothing is helping.  I take Lunesta, sometimes it works and sometimes it doesn't.  I do get more sleep with it than I did Ambien.

roachrp - So happy that your having no problems sleeping.  Yay!

Goodnight ladies

BustersMom

Welcome to tea42.  I am new to this thread as well! 

Well it's "PMS" time for me so my sleep gets even worse...   I was so wide awake after just 3.5 hours last night, I got really frustrated & got out of bed & was swearing, lol.   

I have plans for the evening so I knew I needed more sleep to function..... so after the 3 hour Fish Flopping party, I took benadryl & it knocked me out in 1/2 hour....    and I was out for 4 solid hours.  Although now I have a benadryl hangover

I must must must get to Walgreens for the Calm's Forte!   

Happy Saturday to all....  Juliet

mzmiller99

Juliet - Glad you got some sleep anyway.  I like the "fish flop".  And, I know what you mean about hung over!!  When I take the Advil PM, it works, but I just can't function the next morning!  Wish we could find something that cheap, that would work and not turn you into Zombie-woman the next morning!  Let me know how you like the CAlm's Forte.

Beautifully sunny, but 20 frickin' degrees and windy!  Come on, Spring, you can do it!

tea42

Thanks for the welcome!  I bought my Calms Forte at WallMart today.  If it works it will be the best $3.50 I ever spent!