Help me SLEEP!!!

[kcherub]

Okay...I had been taking Ativan (very small dosage) to sleep every night since (oh, I don't know) last May. That's 2007, people. I began thinking that I should come off of it (liver concerns and the fact that I abhorred any medications before all this crap). I took Tylenol PM a couple of times, and tried Benadryl. They both worked like a charm, but I wasn't sure how safe they were to take on a regular basis as well.

I have tried Rozerem (just twice). Hate it! I take it, and four hours later, I am awake, sweating like crazy, and trying to wrap my mind around the freaky dreams I just had! I can't say for sure that the sweating isn't caused by Tamoxifen, but I don't have it very often. Other than the Rozerem nights and the occasional, "Todd, turn on the AC!"

Anyhoo, now I am reading that there are tons of things you should NOT take with Tamoxifen (ADs, Benadryl, Tylenol PM--it has Benadryl or something like it) because they can interfere with Tamoxifen and might make it obsolete. I curse the Tamoxifen every time I take it, so I don't want to do anything that makes it not work as effectively!!! I even returned a bunch of Mary Kay stuff because of all the parabens. I am getting hardcore, eh?

So, can anyone offer any suggestions? I am becoming a grumpy butt, although you wouldn't know it by my pasted-on, Barbie doll smile in the new photo. LOL

Take care,

[hutchibk]

Hi Krista - I am very sensitive to most drugs, so I was not very excited at the thought of taking a sleep aid, until my chemo started causing me to be totally sleep deprived. My doc had me try Ambien and it was NOT FOR ME! I was hung over for 2 days after taking it. Then he asked me to try the lowest dose of Lunesta, and OMG, I love it! I take it only when I need it and never more that 3x a week. And I never take it more than 2 nights in row.... just because I am a light weight. But, when I take it, I sleep like a baby for 8-9 hours and wake up straight away in the AM, totally refreshed and bright eyed and bushy tailed. I know not everyone has the same experience with every sleep aid, but I love my Lunesta...

[Linda]

Dear Krista:
I went through the same thing, after taking a very small (.5) dose of Ativan nightly during my six months of chemo. It's really addictive and it will take a little time to sleep well without it. I stopped when .5 no longer worked and I knew I had to increase the dose or go cold turkey.
Try cutting down gradually -- use a pill cutter and cut that tiny dose in half, then go every other night, etc. And just expect that it's going to take your body two to three weeks (sorry) to readjust and sleep naturally. You have to go through a kind of withdrawal (insomnia) but it won't take that long.
Good luck. This is a common problem at the end of treatment.
Best
Linda

[Chelee]

Krista, There is nothing worse then not being able to sleep. I went through about a year of that myself...what a nightmare! I tried the xanax, ativan, Rozerem, Ambien. I think Ambien was the worse...it didn't do a thing for me. The Rozerem was awful and it gave me a terrible headache. (Never again!)

I tried other things and finally my doctor gave me Restoril. He said they give that to people in the hospital. All I know is that finally worked. Everyone is different so you have to keep trying meds to see which one works for you. Restoril has been around a long time & works wonders for me. Once I broke the cycle of not sleeping with the Restoril I went off of it and now have no trouble sleeping. Just keep after you doctor till you find what works for you. Hang in there.

Chelee

[GemmaG]

Hi,
Lunesta! You'll love it.

[Sheila]

I know how you feel...it is 5:30 am in Illinois and I am still awake from last night....the Decadron I got yesterday is still keeping me going. I took Advil pm...no help, I hate the effects of Ambien so I just watched more news than I ever wanted to see...I am going to ask for Lunesta and try it!

[kcherub]

Thanks, ladies! I will come up with a plan and see what will work. I just hate lying there, knowing that I either have to get up and go to work or take care of Cooper the next day.

The older you get, the more you begin to understand how important sleep is!

Take care,

[sarah]

Do you take the tamoxifen at night? if not, maybe try that.
also make sure in the daytime you do some tiring physical activity.
all the best.
sarah

[kcherub]

Sarah,

Hey! Yes, I take my Tamoxifen just before I get into bed. When I was on birth control (years and years and years ago), it made me queasy. My ONC. said that if that made me queasy, the Tamoxifen might as well (when I was having a bit of nausea about a month after starting it)...

Take care!
Krista

[Mary Jo]

Hi Krista,

Just wanted to say that I love your new picture. Very pretty.

Mary Jo

[R.B.]

Kcherub,

There is some evidence and some reasonable argument that balancing your omega 3s and 6s / ensuring an adequate supply of long chain Omega 3 in the form of fish oil may help with sleep.

There is a chapter on the subject in my book, which is to an extent is original thought. This is the index to the chapter. The conclusion is as above. http://omegasixthedevilsfat.com/ch27.aspx

Balancing the omega 3s and 6s and ensuring a supply of long chain omega 3s my also have a number of other benefits

http://her2support.org/vbulletin/showthread.php?t=24410&highlight=greek+diet

Please discuss dietary change with your doctor and more so during treatment.

[Bill]

Hi Krista, nice new pic. Ambien works quickly, but only for 4 hours or so. With Lunesta, it's slower to kick in, but helps you to sleep longer. I have Ambien here, which I take once a week or so, and often use a pill-cutter. I'm almost always sleep-deprived, so I often just take a half-dose if I have to get up in 5 hours. Ambien CR is another option, but you can't cut them. Maybe try some melatonin. I got some at the pharmacy, and it worked well for me. It's naturally made by the body, and I would advise trying it also. Like others have said, everyone is different. Diet and eating habits play a big role in sleep as well. I know alot of medications cause insomnia, I know all about decadron/dexamethazone, but maybe other meds. you are taking could be taken at different times if they could be causing a problem. Might not pertain to you, but a good family friend, age 68, non-smoker, very light drinker, was having trouble sleeping for quite awhile. He went to his doc. and after some discussion, became nearly vegetarian and began practicing yoga and know has no trouble sleeping. He's not on any medications, though. About 3 months ago, I quit eating animal proteins and fats during the day and my energy level shot up big-time (sorry I'm rambling, just trying to throw out ideas) If I eat mostly salads and salmon at night now, and some chicken. I've found that if I eat heavy protein at night, I have a harder time getting up the next day. Good luck, sweetie, please keep us posted

[fauxgypsy]

I had just the opposite reactions to Ambien and Lunesta. Ambien helped me sleep for at least 8 hours but I felt drugged. Lunesta helps me get to sleep but I often wake up about 4 hours later. With the Lunesta, I wake up with a bitter taste in my mouth that lingers for several hours. Still, it is better than feeling drugged. I have fibromyalgia and it will flare up if I don't get enough sleep. I have weeks sometimes where I don't think that I would sleep at all if I didn't take something. I try to take it only when I need it, but there are some nights I lay there for what seems like hours until I finally give up and take the Lunesta. Cutting back on my caffeine intake helped as well. I have been making my tea half reg., half decaf. I drink a lot of iced tea.

When I was getting chemo and decadron, there were some nights I didn't sleep at all. Surprisingly enough ;), there was usually someone else up on this forum as well. I finally just accepted it and found something to do that would distract me. The last week or so I have been taking Edahist and Diphyllin GG for a cold and sometimes I fall asleep by eight. It is not a permanent fix but I'll enjoy it while it lasts. Good luck.

[ElaineM]

Hi,
Sorry to hear you are not sleeping well. We need that.
I have never any of the things the other people suggested.
I stop eating 3-4 hours before bed time. It helps to have a little quiet time without the T. V., radio, and other noise. Sometimes a warm bath or shower before bed helps. It helps to sleep in a dark quiet room that not subject to noise in your home. I take my daily medicines that have warnings about making me drowsy before bed time instead of in the morning or during the day. I try not to drink alot of water before bed time. Drinking a little hot milk helps most of the time. It relaxes muscles. When I need more than that I take one Melatonin supplement a couple hours before bed time. Good luck and sweet dreams.

[juanita]

I used to take ambien till the insurance company decided I couldn't have it anymore. It worked everytime for me with no problems. I've tried tylenol pm and it makes my legs twitchy which is worse than not sleeping because it wakes me anyway. I have a new insurance so I'm going to try getting the ambien again. Being awake till 4 when you have to get up at 6 or 7 is a killer, but the same thing happens night after night. I do like to listen to books on tape when I can't sleep. Some of them have put me to sleep.

[R.B.]

I do grind on about it like an old wheel but there are good reasons why long chain Omega 3 found in fish oil and balancing the Omega 3s and 6s may help with sleep as well as providing other health benefits.

These fats are fundamental to body function.

Have a look at some of these NIH videos if you need convincing.

http://www.omegasixthedevilsfat.com/resources.aspx

Please discuss dietary change with your doctor.

[abitjaded]

Good luck Krista, the lack of sleep is my biggest on-going-bug-a-boo. There is just nothing more stressful.

Try shifting anything else you must take to a different time, if possible. If you are taking other things they may case wakefulness or sleepiness that may interfere with your circadian rhythms.

I have not tried Lunesta because Ambien does work for me. Ambien is now generic under the name Zolpidem. This may help with insurance. Ambien CR was the company's response to the loss in revenue when it went generic. The CR is coated and is long release. You can get 10 mg Zolpidem, cut them in half. Take 5 mg, then 5 mg later if you pop awake. Figure out how long it works for you.

Everyone's responses here show how differently we all react. It may take something different with each change of all the other gunk we have to take.

My Onc insisted that Temazepam (Restoril) was the drug of choice. Made me feel like I was hit by a Mac truck. Felt drugged the whole day after. Ativan helped with anxiety and sleep when I was first diagnosed, but was useless for me after a while. Benadryl was good for 24 hours of half-awake-half-asleep, but not good sleep or good awakening, and I had used it for years with success before BC. I do not believe there are any long term contraindications for the use of benadryl, unlike just about any prescription sleep-aid.

Melatonin does nothing for me, but some swear by it. Try dissolving it sublinguinal. Under tongue at back of mouth. Lots of blood supply there to absorb it.

I ended up paying a premium for Ambien at first because it worked. (Drug of choice for my ER Doc friend, who gave me some when I was melting down if my first months of dealing with BC.) It was worth the cost of $3 a pill. Now I can get 30 for $15!

Carla

[trailrider]

Hi,
I have gotten some relief from insomnia by using
relaxation or sleep self hypnosis cd's. Check out Amazon, there are a lot of them. Good Luck

[harrie]

Krista, I don't have any suggestions that was not already posted. But I just wanted to tell you that I love your picture. Your hairstyle frames your face beautifully!

[kcherub]

Hi, everyone!

I haven't been on in a week or so, and I am still trying to come down from my Pearl Jam excursion on Monday! It was AMAZING! Of course, all the fun I had is keeping me from sleeping. LOL

Thanks for all the suggestions and the compliments on the new photo! :)

Tiptoe, Tex and The Chicken were back at my house when I got home--apparently, I should NOT be allowed to determine postage myself. Soooo, it's off to the PO again tomorrow!

Take care, everyone!

[Unregistered]

Hi,

They told me it's OK to take a second Ambien, if the first didn't work in 15 minutes. That usually took care of things.You are under stress, so don't worry about dealing with it. Bev

[DianneS]

Hi Sheila,

How are you doing? I see you celebrated your six year mark and that is wonderful!

I see that you were given Herceptin in 2003? I thought it was not approved until 2005, and used for only stage iv before that time? But it looks like, from your diagnosis story that you were only stage I in 2003?

It is very concerning for me that one can progress from stage I to three or four so quickly and while on Herceptin!

I thought Herceptin was the 'wonder drug'? I'm wondering if I should even bother with doing treatments at all if this cr*p is just going to keep coming back even with Herceptin?!

Thank you for letting me ask these questions, I hope to hear from you. I am supposed to begin treatment this week....but I don't know.......
Diannes

[DianneS]

Also wondering if you chose not to take any chemo after your diagnosis, because it looks like you weren't taking anything for - what (can't see your post) a year or so after your mastectomy? But with her2 positive wouldn't that have been suggested to you? Just confused....my usual state these days.

Thank you,
Diannes

[michka]

I use Light Therapy. My mother bought me a light from Sweden last year. I thanked her but did not believe in it. It is supposed to help you sleep and avoid depression.
I use it every morning, 20 Mn, during breakfast and I feel it works! I refuse to take more pills. I do not want to add side effects to side effects. I have enough.
Michka

[sarah]

Krista,
try having a bite to eat before bed, some cottage cheese or a small piece of cheese and maybe warm milk. Also try books on tape, put the light out, play them softly and see if that might lull you to sleep - of course don't chose anything too scary or exciting!!
and most of all relax. If you can't sleep, read a book and that may help. I read every night - I love reading - and it helps me sleep.
stay well
sarah

[Sheila]

DianneS
I hope I can answer all your questions...
I see that you were given Herceptin in 2003? I thought it was not approved until 2005, and used for only stage iv before that time? But it looks like, from your diagnosis story that you were only stage I in 2003?
I began Herceptin in the Fall of 2003...I was Stage I when diagnosed in 2002, 7mm tumor, HER2++=, ER- PR-, Negative nodes, at that time, due to sm. size of tumor, chemo was not recommended, and HHerceptin was not yet available for Stage I...and I got 3 opinions! I had a L Modified Radical Mastectomy. I recurred 1 1/2 yrs later while going through reconstruction. I was then considered Stage IV and given herceptin. This kept the mets under control for 2 years, then chemo had to be added to keep me "stable". I have been on a combo ever since.

It is very concerning for me that one can progress from stage I to three or four so quickly and while on Herceptin!
I progressed BEFORE I received Herceptin...I often wonder if i had been able to get it at the beginning, if I would be fighting this now...I will never know!

I thought Herceptin was the 'wonder drug'? I'm wondering if I should even bother with doing treatments at all if this cr*p is just going to keep coming back even with Herceptin?!

Herceptin is a wonder drug, and your chances of recurring are so slim with what is available to you nowdays. See what a difference a few years can make in treatment? If they knew then, what they have learned now about Her2, I am sure I would have gotten chemo, Herceptin...the WORKS! and I would not be sitting here almost 7 years out STILL going for treatments....the reality is, I will always be going for treatments, but it has become a way of life, and I am thankful everyday that I have this life, treatments and all!

Thank you for letting me ask these questions, I hope to hear from you. I am supposed to begin treatment this week....but I don't know.......

This has to be your decision, but if I was in your shoes, I'd take chemo and herceptin, what ever the current recommendations are...you don't want to look back and think, if only I had......

I hope this helps, it is a big decision that each of us must make with knowledge, and power as it is our life we are fighting for!

[Sherryg683]

I have always had problems sleeping but have been taking Ambien CR for the past 3 years. The CR is controlled released and helps you to stay asleep longer. When I first started taking it, it would knock me out immediately, now it takes a little longer but not too long if I lay down. I'm not worried about being dependant on it, which I am...I guess with all I've been through, that's the least of my problems...sherryg683

[Linda G.]

Krista,

I have been taking a low dose- 10mg of rx Amitriptyline before bed for a few years. It doesn't make me feel sleepy like a sleeping pill but it helps me get into a deeper REM sleep and if I wake up in the night which I used to do frequently, it's much easier and quicker to get right back to sleep. It's not habit forming so I don't have to use it every night and it's pretty cheap. I pay about $7 through my insurance for 90 pills. The only side effect I have had is a little groggy feeling first thing in the morning. I need maybe an extra 10-15 minutes to form whole sentences but the improvement in my sleep is well worth it. At higher doses this drug helps with depression but at 10mg it just improves REM sleep. Some people think it helps with Fibromyalgia too which I have and I think that may be so because improved sleep is bound to make us feel better!

[madubois63]

Krista - Glad you enjoyed the concert!! I'm taking my daughter to Manhattan tomorrow for a concert (Metrostation - Mylie Cyrus' brothers band). They are really good and I get yelled at for dancing (Mom, stop it. Your embarrassing me...).

Anyway, I go through sleeping problems periodically. Last week I stayed up 48 hours without a wink of sleep. It was really hard on my head. You've gotten a lot of good advise, so I may repeat some/ Try and eat you heavier meals midday, and eat lighter at night. A walk after wards can help clear your mind and help digest your meal. A warm cup of milk (with a tsp of sugar or a package of sweet and low if necessary) or an herbal tea may help. Avoid caffeine after dinner (chocolate, soda's, teas). I keep a bottle of lavender linen spray on my night stand and spray my pillows for a soothing relaxing atmosphere. And a body moisturizer (lavender or citrus) rub are all very helpful after a warm bath or shower. Comfoy cool pj's, the right temp in the room and the right number of blankets help. Keep the tv off. Relaxing/meditation music is good. My most IMPORTANT advice is to breath. Roll your shoulders back, stretch alittle and breath deep and slowly...Good luck!!

I have tried ambien CR (works okay for me), Ativan, and Melatonin (supplement). These are okay, but try taking care of your self and pampering first.

[jentx]

It's been said here before, but Melatonin is said to be good for bc folks anyway. Some take it as a supplement, with or without sleep problems. I think the rec. dosage is 20mgs, though that strikes me as a whopping lot (I know it can also cause morning headaches at that dose). I take 6-9 mgs. It's not as effective as prescription sleep aids, but it feels much safer and it does help... some.

Just wanted to second (third?) that advice-- and the compliments on your pic.

Good luck. Sleep is critical. (BTW, every doc I've spoken to about this has emphasized the need for the darkest, quietest possible sleeping arrangements. So much that during chemo and post-surgery, I sleep in the office/guest room. And when I sleep in my own bed with DH, I use a sleep mask and ear plugs. Very sexy! But whaddya gonna do?)

[Jackie07]

I was having trouble sleeping in my In-law's house last week. Ended up sleeping from 1 or 2 am to 12 or 2 pm.

My Father-in-law uses boric acid to kill crikets in the laundry room where there's no ventilation. Jack's Brother-in-law, a retired mechanic, stayed there last two weeks and used roach spray all around the house. After staying there for three days, I had blood in my nose and rushed back home yesterday.

I woke up this morning in my own house still with blood in my nose. Will call poison control and see if there's anything I can do.

[Rich66]

Jackie,
That is one crazy situation! I hope you're ok.
Joy,
I had a long haul a few years ago with Temazepan reflexively prescribed by a GP. Turns out any of the benzos are pretty addictive with need for increased dosages and bizarre side fx (wait for my memoirs). After lateral RX attempts failed, my ride culminated with a self-imposed 3 day cold turkey weekend that took me close to the edge.

I occassionally use OTC Calms Forte and lavendar oil (wafted, sprinkled about the bed)

Based on your (cute)profile picture, I suggest decaf;)