Bringing in 2014 with Tamoxifen!

HopeEllen - I cannot sleep if I take mine at night.  Switched to mornings, and sleep like a baby (minus the hot flashes)!  You might want to switch times if it continues.

I met with an Integrative Oncologist on Thursday and we were discussing some of the side effects from the Tamox. Turns out he thinks a lot of the side effects are coming from the Effexor not the Tamox. I admit when they kicked in I had just started the Tamox. But because I was on Fluoxetine  I had to stop that and I started the Effexor a few weeks before the Tamox. Which probably would have been about the time the Effexor really kicked in. Just a heads up for anyone else taking Effexor. 

I have a horrible time sleeping at night. I am just hot not really flashes, yeah been there, and I can't stay asleep. He started me on Black Cohosh and Melatonin. Only been a few days so. I'm worried if I can't keep taking the Effexor what else I can do. Guess I will be doing more research. 

hi everyone....I have been on tamoxifen since March 4 2014.   Lots of side effects at first.   This might be tmi, but my urine started to have a foul smell, blurred vision, loss of appetite, low energy, hot cold flashes....that lasted until last month....now I just have occasional hot flashes with fatigue.   

Mrs Darcy -- about 10 months before I started tamox, my cycle had started to change, so I think I was starting peri-menopause.  Once I started tamox, I had one period and that's it.  I understand that can be normal, depending on where you are re: stage of menopause when you start.  The same thing happened to my friend when she started.

Ridley, I had terrible insomnia while I was taking Aromasin and it remained the same with Tamoxifen.  That is one of the several reasons I quit Tamoxifen.  Stay away from the sleeping meds like Ambien unless you can limit to a couple of times per month.  It is easy to become habitutated.  It is not the same as addicted but nevertheless is not something we really want.

My MO NP suggested I try .25mg of Benadryl before bed as I was having insomnia and didn't want any sleep aides.  I take Tami and the Benadryl right before bed and it has helped so much.  Don't hate me, but so far I have had no SE's from Tami at all (hoping I don't get any surprises either), and I think the insomnia is my mind just not shutting off, now that treatment is over and I have had time to digest what the last 6 months.

No experience with Ambien, but if you have a hard time, try the Benadryl, she said they were having luck with it and it isn't addictive.

Keepthefaith.... WTH, and my MO NP is with MD Anderson.  Sometimes I think we all know a little more than they do.  She discussed drug interactions when I first started taking it, but she suggested the Benadryl last week.  I'm already worried about it not being as effective being PR- and you find it all over the web (yes, probably not the best source of info.) but Dr's tell you it is the ER that is important.  It is, but there seems to be enough evidence that it may not work as well with people like me.  I know it is just coincidence, but I wonder since I have no SE's and am usually very sensitive to drugs.

Thanks for the heads up.

jennie, thanks for the link! You're right, we have to be our own best advocate!

justachapter, yeah, I know. Might be worth asking your MO about. 

I started the low dose of Effexor a month ago.  It hasn't stopped the hot flashes but they're more bearable and my mood is much more stable.  (My kids were beginning to believe my head could spin.) I've been taking it at night but my MO suggested today that I switch this one to mornings because I take .25 mg xanax at night to help me sleep.  I also take 3 mg melatonin ... and I sleep.  I wake up a lot but I always have and at least I can go right back out. 

God bless all of us with sleeping problems.  It makes life so much more complicated!  I did read less estrogen in our bodies means less good sleep, and boy, does that ring true.  I'm trying a supplement right now that has melatonin, valerian, and something else I can't remember at the moment.  Just read that there is no evidence that the 2 taken together are safe.  What??  I was trying to avoid going the Ambien route in favor of something milder… is Anything safe that also works??

I'm also taking Benadryl at night along with the Tamoxifen, my MO knows this. Doesn't have a problem with it. If you notice it states "may interfere".  Wonder if that is why MO's are not seeing it as a red flag?

My MO also had me on Benadryl  because I couldn't sleep at night. It was ok helped me to get to sleep but I still woke up. They told me that not having sleep is going to me more detrimental than taking the Benadryl. I don't take it anymore as it doesn't help me stay asleep. There has got to be a better way I hate this s#*t.

Thanks rettemich and Louanne,

Guess my MO NP knows what she is doing as others are on the same regimen, and it seems like with everything there are differences between MO's thoughts. I think with mine, she would rather have me on something less addicting.  And doesn't look at it as a long term issue, I just need my mind to unwind from the last 6 months.  I would much rather do this short-term than taking Xanax or Ambien (I hate taking anything period).  I took Xanax when needed the first month and it was a lifesaver.  My MO also is big on sleep, because not enough will causes of a whole new set of issues.

lovewins, there's a lot online about getting off Ambien.  Some people file a bit off the pill, which decreased the size of the pill until eventually there is nothing left.  They increase the amount filed each week.  My PCP said to take 3/4 of a pill for 5 days, then 2/3 of a pill for 5 days, then 1/2 for 5 days and so on.  When you've taken 1/4 for 5 days then start alternating on day on, one day off for 5-10 days until you no longer take it.  This assumes the women's dosage of 5 mg.  Have you tried time-released melatonin or other over the counter products such as Knock Out by Schiff or Sleep Factors by Biogenesis Neutraceuticals?  You might have to get the last one from a naturopath or online.  And what about taking magnesium citrate at bedtime?  You have to experiment with the dosage.  Too much can cause diarrhea.

I know it's very, very hard.  I eventually had to quit Tamoxifen.  Lack of sleep can cause health problems too.  Keep us posted to see what works for you.  And you can search under corky60.  I started a thread or two about insomnia and there were many suggestions.

Bayoubabe, thank you! I hope so.