Tamoxifen is making me crazy

Juli50

I just started Tamoxifen, but I wanted to tell you about my experience with Effexor. All through treatment I have discovered I tend to get severe SE's. I completed 8 out of 12 weekly Taxols due to neuropathy, completed only 11 weekly Herceptins due to Congestive Heart Failure and pneumonitis, and mid-way through rads developed a stinging pain all over my skin when I get hot. I am still having this problem. I was put on 75 mg of Effexor (generic, so it's not time-released) to make my hot flashes less hot, so my skin wouldn't sting when I had them. My oncologist actually wanted me to take 75 mg twice a day, but I was afraid of the SE's. They already caused dry mouth and constipation and I couldn't imagine that getting worse than it already was. I went to a neurologist for the stinging pain and she had me try several anti-seizure meds, but nothing helped. She also suggested I double the dose of Effexor. I figured since I had 2 doctors now telling me to double it, I should. Well... 9 days ago I started feeling very weak and short of breath when I walked around, especially when going up stairs. By the 5th day, I was really worried it was heart failure, so I went to my cardiologist. He sent me to the ER for a lung ct scan and blood tests. Everything was negative. I went back to him yesterday and he still insisted it was not my heart, but he had no idea what it was and suggested I go see a neurologist. When I got home I stared at my calendar until I made the correlation that 2 days after I doubled the Effexor, the symptoms started. I went back to 75 mg yesterday and hope that I will be feeling better soon. Still no cure for the stinging skin when I get hot, so if any of you have heard of this, let me know. I have asked every specialist I have seen and none of them know what causes it.

Thanks and hugs

Juli

EvaPerone

All: Agree that depression has only stepped in post-chemo and most likely is exacerbated by tamox. I think I finally stopped fighting and just started trying to heal and whammo - the loss of my breast and hair and sexuality (I dried up like sandpaper during chemo)  - came to the front.

Still questioning effexor as I'm worried about my job if I cannot think after another sleepless night (I call them 2 or 3 nightgown nights). But after reading here and Juli's comments, will try to hold out for 90 days and see it my system adjusts.

Btw, I wrote previously that I was on Trader J's fish oil, well it has soy. So switched to Blue Bonnet. I'm still using soy milk with my cereal, anyone else struggling with soy?

Glad everyone's here, hard to share this with friends that cannot relate. Eva 

FionaF

Thank you for sharing Robin....  Im sorry you feel it too but am glad Im not the only one...

I see the pain management folks today to make a new plan for meds.....do you take stuff for the effects?  Im still taking advil, some vicodin, etc etc.  It just seems to be a constant struggle of meds versus tummy upset. 

 thinking of you!  Fiona

FionaF

HI All,

Just wanted to add thank you to all of you!  I absolutely appreciate reading these posts and I could not agree more that it is hard to talk to others about it who havent "been there".  I am also worried about going back to work as when I interviewed for a job last week I was SO wiped out when I got home, I could barely move.

I do feel like the tamoxifen is making things worse, in hindsight I would say that I had been feeling more on the path to healing before starting the drug, and I have taken a bit of a downturn....I am willing to wait a few more weeks and see how I feel but this is a drag!!! 

Hugs to all,  will keep you posted about anything else I learn...

Fiona

IllinoisNancy

Hi Ladies,

I don't know if this is the appropriate place to put this but Tamoxifen combined with Effexor has made me so I don't really have sadness or anger.  I used to cry at sad movies but not anymore....I used to cry when I hurt myself,but not anymore.. I used to get my feeling hurt easily but not anymore.  My family thinks that I'm tough as nails now and I guess I have to agree with them.  I don't let things bother me at all.  Everyday seems like a new day and I'm just glad to be here to enjoy it.  I guess my meds have helped me cope with life better than ever.  Maybe I should have been on them a long time ago. 

Have a great weekend,

Nancy

FionaF

Thanks Nancy for sharing!

I just started effexor...yesterday.  My doctor begged me to start and your post was so helpful.  I really hope it helps me get a handle on my moods and se from tamoxifen.....

thank you thank you,

Fiona

PalmettoSun

I realize your post is 7 years old, but it really helped me. Im a month into Tamoxifen and had to call my doctor yesterday for an Anti-Depressant. Not sleeping good, no patience for anything. I hope your ending results are good!

Dfarm13

PalmettoSun

I am on here looking to see if anyone else is having issues. I've been on it for a few weeks. The hot flashes started about ten days ago. I have not slept more than three hours at a time because I wake up sweating so bad. I also am glad to see I am not the only one with issues. I haven't had any mood swings yet. I'm hoping that doesn't come.

Good luck!