TAMOXIFEN - NEUROLOGICAL SIDE EFFECTS?

Blue Cowgirl, sorry you are going through all this!   I only took tamoxifen for 2 months.  I developed the hand/foot neuropathy, but always thought it was taxotere induced.  Perhaps it wasn't taxotere... perhaps it was tamoxifen??? Who knows??? (It is better now...not gone, but much better.) I had bearable hot flashes, not nearly as bad as some of the ladies here.  (However, the hot flashes are less severe and less often, now.) The HUGE problem I had while on tamoxifen was SEVERE DEPRESSION.  I stopped taking it and the depression lifted and thank heavens is now gone.  It was absolutely awful!  There was no way I could have continued, I stopped taking it mid-November and I am SO MUCH BETTER now!  I don't take the decision lightly, but it was the right decision for me.  I hope you get better very soon!

BlueCowgirl~

I'm sorry to hear you are dealing with this neuro issue on top of everything else.  I hope you get answers soon and that your outcome is good.

How long has it been since you stopped taking the Effexor?  Did you wean off of it?

I am officially diagnosed with "antidepressant withdrawal syndrome."  I have been off and on six different antidepressants over the past 12 years originally prescribed by a neurologist for migraine (Effexor, Prozac, Paxil, Lexapro, Cymbalta, Zoloft).  Even if I was weaned off of them, I had strange neurological effects from ALL of them including Effexor.  My main symptom was what they refer to as "brain buzz" or brain zaps."  They would be severe for 3-4 days, but continued for up to 3-4 weeks.  I also had various unpleasant symptoms during the course of taking antidepressants, not just while weaning off.

At the time this first happened to me my PCP was perplexed as the drug manaufacturers did not recognize/acknowledge this was happening to patients, and it was not listed in side effects on the PIs.  Withdrawal symptoms are now listed!  

To help wean me off the antidepressants, my PCP would switch me over to Prozac and then wean me down off that.  Prozac has a much longer half-life than all the others so this way the withdrawals effects would not be as severe.  Prozac is listed as the worst inihibitors of tamoxifen.

I was on tamoxifen briefly (two weeks) and had markedly increased depression, and severe intense knee & hip pain.  I'm supposed to start taking tamoxifen again soon,  I learned that antidepressants inhibit tamoxifen.  I just fought my way through some severe depression (with therapy) as a result of not coping well with the BC Dx, complications from surgery, and ongoing pain. 

I am not against antidepressants at all -- just wish that they didn't do what they do to me.

Again, I wish you peace and wellness.     

BlueCowgirl-Great news! Still no answers for your symptoms. Hoping you find some relief SOON! I think my neuro issues are easing up a little. Could just be wishful thinking. I'm seeing a new MO next week. Maybe I'll be told something different.

Morning gals...Bluecowgirl, that was so sweet of you to include all of us in a "personal message" on this thread!  I was afraid to even mention "hearing loss" because I didn't want to make anyone else afraid to take Tamoxifen, but then I thought, what if I talked about it, maybe this could help someone else who is losing their hearing? 

I kept taking Tamoxifen for 2 months, after my one ear plugged up...And my PC treated it as though it was allergies...then the other one plugged up.  So two months after it started, I quit the Tamoxifen on my own!  I called the Onco on a Sunday, so afraid because I couldn't hear, & the stand-in said he had never heard of it... I didn't care, I wasn't about to take any more.

Then when I saw Merilee ALSO lost her hearing, I PM'd her... She is a lot younger than I...I've read a few more women on this board that also have hearing loss.  She & I both have tried to make a change with the FDA, & have hearing loss listed as a SE.

So just maybe, one of the gals on here, will notice that they can't hear as well, and stop Tamoxifen before they become deaf.  Our Docs don't seem to want to believe that this can happen.

And YOU bluecowgirl....Having things going on in your head???  That would scare me to death. I had a brain-concussion when I was a teenager, & having amnesia for about 8 hours, then losing my memory of all of my school years....it's a wonder I can put a sentence together!   My brain healed, over many years....I was just living in the "now" for so long....the "now" started about the time I met my DH when I was 18.   So take care of yourself!

All of the women you mentioned on here...and have posted.... My heart goes out to all of you, for fighting through your breast cancer, and all of the side effects!   It's such a bond we all share on this thread...

Thank you bluecowgirl, for starting it.  Take good care.

Bluecowgirl: If cancermath doesn't have your precise diagnosis, try inputting different parts of it and see what you get. For example, it doesn't give risks for someone who has both lobular and ductal cancer, so run it once with lobular and again with ductal and see what the difference it. (Probably not much.)

Within 2 days of starting Tamoxifen I started having horrible side effects - to the point where I couldn't even stay awake, and about an hour after taking the pill, my head would get all strange - it's hard to describe - I wasn't dizzy, more light-headed, and everything looked fuzzy to me. 

 The most upsetting part was then the nurse-practitioner told me I couldn't be having side effects so soon, and to keep taking it.  So, I tried taking it at night (hoping to sleep through the worst of the effects), but that didn't work.

I only took it for about a week, but it took about another week for the symptoms to even begin easing.

 I'm done with all the medical pills and side effects .. I've been researching the natural things, because this was just unacceptable.  And I didn't complain once during chemo.  This was 1000 times worse for me.

I just HATE when I am making a good point, & I stop to look up a word & I lose the whole * thing!

As I was saying....We want to believe that Tamoxifen will benefit us, and supposedly keep us from getting cancer again, but there ARE women who are taking this and still get cancer.  It stands to reason that maybe it MIGHT help prevent ER & PR positive cancer from starting or coming back, but there are so many other types we can get!   It is a preventative, tool, that is supposed to help us after radiation or chemo....

And a lot of women, on these boards have SOME side effects, but they battle through them.  But some of us have profound problems, and have to make it on our own!  We don't get much support from our Doc's either....

 It's up to us...like you itsjustme.....!  I know what it's like, talking to our team that are supposed to know a LOT more about Tamoxifen's side effects, but who can't fathom SE's like what we are having!   But since my team couldn't believe or help, I found it all out by searching on the Internet.  After I showed all of the reports to my Oncologist, and sent them to the FDA, AND the drug manufacturer...I just took matters in my own hands and quit that darn pill! 

I'll never be able to hear like normal people again, but what else could I do?  I just wish the FDA would require drug companies to warn people of what COULD happen, & put it on the labels, so if those SE's started happening, we would know to STOP taking it. 

Wishing you all the best....Take good care....

Blue Cowgirl,

I saw Dr Mary Hardy at the Simms-Mann Integrated Oncology center - UCLA. If you aren't in Los Angeles, I wonder if you could get a phone appt? She has me on a routine that makes the side effects, while definitely noticeable, less miserable. In addition to her herbs and supplements, I drink water in a way I never did before. Don't let yourself become dehydrated in the slightest. I think it makes a difference! I will say, because I do to my family and friends, there is no doubt in my mind that I traded much of who I used to be (in terms of energy level, sexuality and emotional health) for life. I am trying to cross the 2 year mark on Tamoxifen and re-evaluate at that point. 7 months in... 

Thanks cycle.... I found the link, & posted there....maybe we can make a lot more gals aware!  I had no idea THAT many different companies made "Tamoxifen".....

Tamox was just stopped for me due to dizziness & vision changes. Nowhere near as bad as your's, Bluecowgirl. Hoping your neurological symptoms improve soon. So frustrating & now your treatment plan is probably once again undecided. Take care.

I've been of the Tamox for 3 days now and the dizziness is almost all gone. Since I didn't have chemo, I have to think it's the Tamox. I can even turn over in bed without getting dizzy. I'm supposed to start back on 1/2 dose(10mg) in a week.

I am so late in this thread to comment, but it fit my search criteria. I was diagnosed w BC 5 years ago, had so many side effects w tamoxifen than I stopped taking it, and CA metastasized to spine and lungs. 7 months of Taxol, my oncologist took me off it bc I responded so well, I'm now 5 months out and have so many strange neurological symptoms, along with the typical ones, that it's driving me crazy. These symptoms had already commenced when I had my bone scan and CT at MD Anderson a month and a half ago, and those were all stable, my oncologist just urged me to use OTC meds for the joint pain. I've had the feeling of wind from a rolled down car window blowing in my ear, symptoms of sciatica in left side, weakness in right side (arm and leg), and if nothing is showing up in bone scans, it has to be pharmacological. I am so stressed out, I'm a physical therapist, so I know these symptoms are neurological, but my oncologist nor any of the online drug info wants to list these symptoms as SE to this drug. Help.

Hi PotofGold-

Welcome to BCO! This is an older thread, and it's unlikely you'll get a response from any of the original posters. You might want to try posting in our Bottle O' Tamoxifen thread, lots of information there, and members who may have some insight: https://community.breastcancer.org/forum/78/topics....

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