Horrible Insomnia on Tamoxifen
I am ready to quit tamoxifen due to the terrible insomnia. Two hours sleep last night. No sleep the night before. My PCP says to take melatonin. Doesn't work. My MO gave me a prescription for a sleep aid (not Ativan) which is habit-forming if not addictive. She also says that I am very sensitive to hormonal manipulation. Is this the trade-off, becoming addicted to a sleep aid in order to be able to take Tamoxifen? Would like some quality of life. This is making me sick. Any suggestions?
Comments
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I take mine in the morning to avoid the insomnia. Effexor can cause drowsiness, so I took it at night initially. I slept like a rock. I had really vivid dreams though.
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Thanks famerlucy. I take mine in the morning too. But I don't take Effexor.
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I take my Tamox. at night along with a Xanax. The Xanax seems to work and I have started sleeping through the night.
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Thanks Smitty. My doctors don't want to prescribe anything that's habit-forming (although the MO prescribed the habit-forming sleep aid) and Xanax can be.
I wonder how common it is that women on tamoxifen have to take another med in order to tolerate the SEs of tamoxifen such as insomnia. Sounds like a topic for another thread!
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Corky, I am subjected to some restlessness, and only occasional no-sleep too. Or, plenty of nights where I 'know' I slept, but felt like I was awake all night..that's just weird, and leaves me drained all day.
My Onc. suggested trying different times of day to take it, to see what worked best. I take it before bed, along with an Effexor (to aleviate night sweats)...Ha! They aren't working very well...
But like farmerlucy stated, my dreams are vivid, indeed...I feel for you. I completely understand about the 'trade-off' notion. Ugh...Hope you get something to work for you...soon!
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Perhaps some Melatonin?
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Sometimes I take a Zyrtec ( OTC allergy med ) at night which seems to help me sleep plus helps with my allergies. I know we shouldn't take benedryl or anything that has the same chemical compound as benedryl ( ie Tylenol PM) since it is on the list of drugs that should not be taken if taking Tamoxifen.
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I've taken the tamoxifen in the morning, or afternoon or evening and it makes no difference. No night sweats or hot flashes so no need for Effexor. I'm glad it's available for those who need it, that's for sure.
It was the same on Aromasin. At first no insomnia but after a couple of months the insomnia was debilitating. And now the pattern repeats with tamoxifen. Estrogen must be finally depleted at this point.
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I just started Tamoxifen on Tuesday. On average how long does it take for side effects to kick in if they're going too? I'm taking 2 10mg pills instead of 1 20mg. I take it morning and night.
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Corky - I feel for you. I have been taking it for 2 years. Initially I was on Arimidex but my ONC switched me to Tamox when I developed osteoporosis. Since Arimidex attacks the bones it made sense to switch me. The good news about Tamoxifen for me is my bone numbers are up at least in part due to Tamoxifen. I have sleepless nights and night sweats too but they are manageable. I also have weight gain and difficult concentrating sometimes. All in all not too bad for me but I have read posts like yours where women are really suffering from the SEs of this drug. You have to have a quality of life too. There are a number of drugs like Tamoxifen out there I cant believe your Oncologist can't find something that is less debilitating. BTW I take mine in the morning right after breakfast. Diane
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I see my MO in a month. I am going to call her office on Monday to request a one-month "drug holiday" from tamoxifen. We'll see if things improve in that month.
edwards750, I started on Aromasin and when I couldn't tolerate that the MO switched to Tamoxifen. She said that the other two AIs would be the same if not worse for me. Like you I have bone density issues and that definitely makes me want to take Tamoxifen. This was the less debilitating choice. Who knows, maybe I will be doing three months on, one month off on a regular basis. I will be curious to see if the joint issues resolve in the month too. My elbows are exquisitely tender. My PCP says this is a musculo-skeletal problem.
Then again there are other SERMs so we will see how the conversation goes next month.
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Sunshineinky, we are all different. Some women experience no to minimal SEs from tamoxifen. I think that the most common are hot flashes and night sweats. And if you're pre-menopausal there can be other SEs. I'm not sure that insomnia is very common but it can happen as you can see from the posts.
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Corky I'm 45 so I'm definately premenopausal. It's almost like I'm waiting for something to happen. I just didn't know if it builds up in your system or if side effects happen from the moment you start.
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I am off to meet my RO on 5/29 and as I am 10+ years post menopausal I am going
to ask about an AI as an alternative to Tamoxifen as I am already a
chronic insomniac that requires a LOT of unisom or other benadryl type
OTC sleep medicine, also Lorazepam when I get anxious. I have tried all
the more "natural" melatonin etc. type sleep aids and for me they are
all totally ineffective.I know that I cannot take Tamoxifen with
my OTC sleep aids and I am
already only managing maybe 5 or 6 hours sleep at most. I am fatigued
most of the time then usually fall asleep in the afternoon for 2 or 3
hours with
no sleep aids on a weekend when I finally get exhausted.Years
of being in a on-call rotation have wrecked my sleep habits and I have
finally decided to quit my job in the fall once I am through the rads etc and can work out the insurance which is currently through my job. I just cannot cope with
being woken up, or the fear of being woken, in the night for work any more.I will ask for heavy duty prescription sleeping pills(for the nights I am not on call - only 4 or 5 more weeks of on call I hope EVER) if the treatment worsens my insomnia . I don't want to refuse the on call until I leave unless I feel too ill to work. My immediate colleagues are really nice and there are only a few of us to cover for each other. They had to cover for me while I was off for a week due to the surgery and also my future appointments and treatments, and they get tired too. They are not young kids either.
One
thing I HAVE recently found helpful for me however, although I have no
idea if they are good or bad for people, are ASMR videos on YouTube. I
put my headphones on and get a virtual scalp massage or listen to
relaxation techniques like breathing and relaxing my muscles and I do eventually fall asleep listening to them, although I shut my
computer lid as I just want to listen not watch a video when I am
trying to sleep. It is kind of weird I guess but anything that helps. They are very relaxing. -
kayb, thanks for the response. Were you able to quit Ambien and Ativan cold turkey once the tamoxifen was out of your system? My PCP told me that Ambien is habit-forming and Ativan is addictive. I don't know what my MO thinks about that combination. Family doesn't want me take tamoxifen at all due to the SEs and possible SEs. So there is that to deal with too.
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lyzzysmom, thanks for the suggestion about the videos. I will have to check into them.
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Sunshine, I too was premenopausal. My periods had already been stopped by chemo, and I began my daily 1x20mg Tamox. I began within a month to get the se's...headaches, sleeplessness/restlessness, night sweats etc... and like Corky, I am just sick of it, and now it's been 6mos.
I go to my Onc in a little over a week, so I WILL be asking her what I can do too.
melrose- what is it about benedryl or the like, that we aren't supposed to take it? I didn't know that! But I will add that I never do unless it is Absolutely necessary...again because of the se's.
Corky, maybe they will come up with something else for you, because we all know a lack of sleep is indeed never a good thing, especially long term...or in my case, the short term leaves me exhausted, cranky, and my chemo brain is ten times worse.
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kayb, yes we had the "talk" and my real risk is 15%. This is a puzzle to me because of my stage, grade and size of the lesion. I didn't have the Oncotype test or chemo. I was told they weren't necessary. In addition the biopsy removed the lesion and there was no cancer present in the lumpectomy. But AdjuvantOnline says the ten-year survival rate is 85%. So yes, I think that 7 1/2% is worth the medication.
Thanks for the dosing of the pills. I will suggest this to my MO when I see her.
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Alive4Five- There is a big list of drugs that should not be taken if one is taking Tamoxifen. This particular drugs inhibit the body's ability to use a particular enzyme to help absorption of the Tamoxifen. Here is a link to the BCO.org main website on Tamoxifen. Scroll down the page and you will see some info on the enzyme CYP2D6 and a short list of what should not be taken if on Tamoxifen. . http://www.breastcancer.org/treatment/hormonal/se...
There is a bigger list on drugs.com of drugs that should not be taken with Tamoxifen. Here is the link to the drug.com interaction checker... http://www.drugs.com/drug_interactions.html.
In addition to those no no drugs, one should not consume grapefruit ( fruit and juice) and pomegranates ( fruit and juice) because these also can negative affect the body's absorption of the Tamoxifen.
Hope this helps.
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corky - do you exercise? i read it helps and i do it daily and my vivid dreams went away. at the beginning, i had trouble having a good night sleep but after a while my body adjusted to it and now i could sleep. and i assume exercise helps. i take it in the morning.
i also took/take dr wong's herbs while i had those SE.
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juneping, I exercise three times per week. For me that's pretty good considering I have fibromyalgia. Fibro also causes sleep problems. It seems like it piles on.
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can you add yoga to your regime? and hot bath before bed time. if hot bath is too much may be you can just soak your feet into hot water for 10 min. give it a try. i would do anything for a good night sleep.
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Thanks, kayb. I do struggle with how to manage my meds. I think this is a common problem with BC survivors. Right now the struggle is with melatonin. Too much and I'm drugged and dragging in the morning. Not enough and it doesn't help. But I do like the time-released version by Natrol.
juneping, no yoga in my future at this time for various reasons. But I will keep it in mind. Thanks for your suggestions.
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kayb, I usually take 3mg but sometimes 5mg. The Natrol brand comes in 1mg, 3mg and 5mg. Sometimes it's on sale at a local pharmacy but I usually get it from vitacost.com. Some on these boards take 20mg.
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I've been using melatonin for several years now - sometimes 3 mg, now usually 5 mg. It took about a month to really have an effect. When I was first dx'd & had trouble sleeping, I didn't want to add any more meds than absolutely necessary, so I tried to avoid traditional sleeping pills. In addition to the melatonin, I found listening to calming "new age" music with earbuds really helped get me off the worrying & on to sleeping. Sleepytime tea (Celestial Seasonings) helps, too.
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my insurance agent told me her mom was on tamoxifen and drank valerian root tea. It's very similar to melatonin, one element to help stay in good sleep.
I was told there's a sleep hormone and the only way to get it is thru sleeping. So I love those natural remedies.
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I like the sound of rain and find it relaxing so I just ordered two rain CDs. Yes, some of us don't have MP3 players (yet). I will listen to them at bedtime to help sleep. At least that's the plan!
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I have been taking low dose lorazepam (ativan) 0.5 for a few years. My doctor prescribes a 30 day supply to last me 60 days or thereabouts and I have not become dependent. I eek them out as needed and have no side effects. Sometimes I can go multiple days without. My surgeon prescribed me a few extra after the surgery. I have never tried Ambien but Lunesta would send me to sleep but only for about 4 hours and they were expensive too.
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Just this week it hit me. I thought it was the stress of everything. But now I believe it is the Tamox. My issue is I can go to sleep ok. Just can't stay asleep. Always wake up between 2 and 3 then can't go back to sleep. Which makes me sleepy all day. I am taking Effexor too. I have an appointment Mon with MO, which makes me wonder because wasn't to see them for 3 mos. They called a script for Potassium last week. Makes me think my blood panel. I sure hope they don't change though I do NOT want risk the bone loss. Any one have any suggestions for Staying asleep?
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I wish I had suggestions for you on how to stay asleep. Anyone? There is a discussion about cherry juice on one of the tamoxifen threads. Tart cherry juice is supposed to be better.
Tried the "rain" cds. Not so relaxing in the ear. Made for a terrible night's sleep. Back to square one.
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