Tamoxifen and Insomnia: What Users Say

• I...
• Taken for 6 months to 1 year
• August 16, 2015

For Breast Cancer "I've been on this drug for nine miserable months now. I had said I would try it for one year, and I'm not sure I can make that. It appears that quality of life is not something my doctor cares about. It's almost as if he's being paid by the tamoxifen people because he won't even listen to anything negative about the drug. My hot flashes are unbelievable. My joint pain makes it difficult to walk. I haven't slept in nearly a year. This drug makes life not worth living."

• Jul...
• Taken for 6 months to 1 year
• February 25, 2019

For Breast Cancer "About 3 weeks after starting tamoxifen, I would wake up at night with night sweats and just insomnia. I noticed that I was definitely more hungry and craving junk food, which in turn caused me to gain about 5 pounds. I could have lived with these side effects, but then I started flying off the handle with my children at the drop of a hat. My reactions were crazy. I am normally generally mellow and easy-going. Then after about 4 months, I noticed I was having trouble focusing at work and was in a brain fog. It was mild at first but continued to progress to where I would fall asleep regularly at my desk. I decided for the sake of my new job (I am a widow and sole provider) that I needed to go off it for a while. After about 2 weeks, my life started returning to normal. I occasionally try to take it again, but then after a few weeks of starting it, the side effects return. I really wish more options were available to me to prevent the recurrence of breast cancer."

• Mar...
• February 4, 2018

For Breast Cancer "I have been on tamoxifen for nearly 5 years now, and can honestly say I have not experienced any side effects. I have opted to carry on taking this drug for another 5 years to prevent my breast cancer from returning. I do have a bit of trouble sleeping, but I am putting that down to going through the change. Reading the comments on here, I think that I am one of the lucky people that it hasn’t had a horrible effect on."

• MKa...
• Taken for 1 to 6 months
• January 20, 2019

For Breast Cancer "Was on tamoxifen for five hellish weeks and had every side effect except hot flashes. My body hurt, I couldn't sleep, I was angry all of the time so my oncologist wisely agreed with my decision to stop the drug. Quality of life was so bad."

• Mel...
• Taken for 1 to 6 months
• December 18, 2019

For Breast Cancer "I had grade 1 breast cancer in Feb and had lumpectomy and 2 lymph nodes removed. I had good news in June that they were all clear after radiation. I'm now on tamoxifen since July. At first, there were no side effects. Then the sweats got worse, I had trouble sleeping, pain in my back and fingers. Then I had a cramp-like pain in my leg. I had the all clear from GP that leg was fine. I went to Mexico in August and both my legs were so painful that I had to limp. In the mornings when I came home, I went straight to a&e where I was told I had blood clots in each lung and the right one inflamed. I'm now on blood thinner injections for 6 months and may need tablets after that, all because of tamoxifen I was told. Has anyone else experienced this?"

• que...
• September 14, 2014

For Breast Cancer, Prevention "I have been taking tamoxifen for less than a month. I have had fatigue, chills, shortness of breath, night sweats, blurred vision, difficulty sleeping. It seems as if I get over one side effect and here comes another. I feel like I am going crazy. I am trying to stick with it, but it keeps changing."

• tlc...
• September 1, 2010

For Breast Cancer "Though this medicine may give you a chance at living longer, the mood swings are massive. I feel depressed and have no energy. I am always nauseous. Everything hurts. My sex drive is basically gone, and my periods are slight if not altogether absent. I have shrunk inside a bit, so now sex is painful. I have hot flashes that keep me awake at night and make me very unhappy during the day."

• Anonymous
• June 20, 2016

For Breast Cancer, Prevention "I've been taking Tamoxifen for 10 months now. At first, I seemed okay. The doctor prescribed Effexor at the same time to combat any menopausal symptoms. I fell into a bad funk. SEVERE depression and not sleeping. I stopped taking the Effexor (doctor wasn't too happy) thinking that was causing some adverse effects. He put me on Trazodone 50 mg for sleep. That worked for a short period of time so they upped the dosage to 100 mg at night. However, my depression is tenfold. I'm so irritable and angry all the time. The slightest thing sets me off. I can't stand to be around people. I can't concentrate and my appetite has decreased. I've lost about 8 pounds. I just don't feel right, ever, anymore. I have to stay on this for 5 years."

• Mon...
• Taken for 1 to 2 years
• March 15, 2018

For Breast Cancer "For those of you who only had menopausal side effects - hot flashes, night sweats, insomnia, dry skin - great. I had all that plus anxiety attacks, depression, headaches that made migraines seem like a walk in the park, hair loss, muscle aches and cramps, fatigue that made it difficult to just walk to the bathroom, blurred vision (I had already had cataracts removed). The list goes on and on, but to compound it, when I told my doctors, they said, 'Oh, tamoxifen doesn't cause that.' I gave them the list of side effects with the ones I had marked, and it was thrown in the wastebasket in front of me. Now that I have quit taking it, the side effects come and go. They can and do return over and over again about every two to three months and last two to three months. My doctors told me none of this, so if you are contemplating taking it, do the research first. I wish I had."

• ESe...
• Taken for 6 months to 1 year
• August 14, 2019

For Breast Cancer, Adjuvant "I've been on Tamoxifen for about a year as hormonal blockade for stage 1 invasive ductal carcinoma (small, but grade 3). At first, I just had insomnia, which is being treated with Ambien and Remeron. Now, I'm getting crushing fatigue, TMJ, and hip bursitis after I walk (about 2-3 miles on most days). I've also had a posterior vitreous detachment, first in the left eye, then in the right. The line I'm getting from oncology is: Those are symptoms of aging; everyone has those, and it is not Tamoxifen that is causing it. Well, I went on a trip and stopped it for 3 weeks. Walking about 4 miles daily, on the go, and I didn't have the pain. Started Tamoxifen again, and it all came back within a month. Very frustrating, but I'm afraid not to take it."

• Aun...
• Taken for 1 to 6 months
• July 10, 2016

For Breast Cancer "I found my lump before Christmas. It was in the milk duct, 2 surgeries weeks apart to remove both lumps, painful. Tamoxifen is horrible! Always sweating, barely sleeping. I already had a hard time with insomnia, now this drug has made things worse. Started taking this in April. I will start taking the drug in the morning instead of at night. Hopefully, I may be able to get some sleep through the night without having to change sheets nightly. After reading the other posts, this explains my constipation, lack of energy. Will see what kind of meds or herbal product I can take for the hot flashes, getting unbearable."

• bas...
• August 10, 2015

For Breast Cancer, Prevention "I have been on Tamoxifen for 4 1/2 years. I have insomnia, mood swings, and other small side effects. I can't wait till my 5 years are up. I stayed on this pill because I want my risk of cancer to be low. My family has been very kind and patient with me. The worst side effect is cramping throughout my body."

• pin...
• January 16, 2017

For Breast Cancer "I was on tamoxifen for 5 years. It drove me into severe depression. I was delusional to the point of being in a psychiatric hospital for 1 year. No doctor at the time could find out why I was as I was! I had water retention, weight gain of 25 kilos, fluid on my lungs, which caused coughing to the point I felt I was suffocating, insomnia, joint pain, nausea, and hot flushes. And to crown it all, skin disorders, of which the rash and sores made me look like I had HIV. Bicarbonate of soda, lemons, and ginger have improved my health!"

• HOT...
• Taken for 2 to 5 years
• May 2, 2014

For Breast Cancer "The wisest decision I can share is changing when I take the tamoxifen. I decided that sleep was imperative in order to deal with the side effects. I take the tamoxifen during the day. I live in CA, so temperature-wise, this is a good thing to do. Running hot is an understatement. Skin and hair have taken a hit as the hips have improved. I suspect the lack of juice to connective tissues is the reason. Also, arthritis has shown up in both knees. One perk? Evenness of mood after 2 years. My 10 rating? No recurrence as of 2.5 years."

• Jos...
• March 3, 2016

For Breast Cancer "I have been on tamoxifen for 5 months now, and it truly is difficult to isolate the side effects of the drug alone due to the fact that I was perimenopausal prior to being diagnosed with Stage 2 breast cancer with micrometastasis in one lymph node. I am 52 years old. My primary complaint is insomnia. I have become a light sleeper, waking up 10-20 times each night. While I am able to fall asleep again, I never feel as though I have had a deep, restful sleep. I take my tamoxifen in the morning after I brush my teeth. A year post-diagnosis, which included surgery (partial mastectomy), chemotherapy, 25 rounds of radiation, and now tamoxifen, I have endeavored to train for an Ironman race in August. I am getting stronger every day."

• Mst...
• Taken for 5 to 10 years
• February 6, 2017

For Breast Cancer, Adjuvant "I had stage 2 grade A IDC with trace evidence in the sentinel node. I've been on tamoxifen for 5 years, with 5 years left to go. I currently have the following side effects: hot flashes, night sweats, insomnia, fatigue, blurred vision, hair loss, hair thinning, hypertriglyceridemia, bone and joint pain, and cannot tolerate drug brand changes, and have had to have a total hysterectomy."

• Tin...
• Taken for 1 to 6 months
• May 15, 2023

For Breast Cancer, Prevention "I was on Tamoxifen for 3 months, and I had a lot of side effects that were not good. In the 3 months that I was on it, I gained 30 lbs, was moody, had hot flashes, brain fog, severe constipation, and had a hard time sleeping."

• RNa...
• Taken for 6 months to 1 year
• July 7, 2021

For Breast Cancer, Adjuvant "At age 58, I was diagnosed with stage 1 IDC in Oct 2017. Had a mastectomy in Dec 2017. Refused to start aromatase inhibitors for the first year post-op due to side effects. Tried AI for a month after the oncologist convinced me, and I had side effects of terrible muscle pains and cramps, hot flashes that were severe, and severe constipation. Was also put on Effexor to help against side effects. I stopped both of these and asked to be put on tamoxifen, but at a lower level with my argument being that the San Antonio University study in 2013 documented that 5 mg was enough to keep cancer from reoccurring and the 20 mg caused greater side effects. Also, an Italian study states the same. My oncologist doesn’t like it, but I take the 5 mg dose daily, at night. Still have insomnia, hot flashes, muscle pains, and cramps. Also, my BUN level is high. Is this drug worth being on with these side effects? I’ve weaned myself to 2.5 g per day, and symptoms are a bit less."

• Ney...
• July 27, 2021

For Breast Cancer "I was diagnosed with breast cancer last year at the age of 32 and had my mastectomy on Oct 28, 2020. I began taking the tamoxifen in Feb this year (2021) and stopped after a few days. After visiting my oncologist, I realized how important it was that I continue with the medication. I’ve taken the medication consistently for two months, and within the months, I’ve experienced hot flashes, insomnia, leg pains, and mood swings that have interfered with my life. Counseling is a great help along with my support system. On top of this, I can’t begin freezing my eggs until after being on the medication for three years. There are a lot of sacrifices I have to make and realities that I have to face at now age 33. I want to live and will do what’s necessary to make sure that I give myself that chance to."

• Jmh...
• Taken for 1 to 2 years
• March 26, 2023

For Breast Cancer "I started tamoxifen one year ago. For the first four months, I had not one side effect, but then I slowly started getting side effects. I was severely depressed, angry, and agitated, had hair loss, sweats, chills, insomnia, tiredness, aches and pains in my ankles and knees, pins and needles, and cramps, and the worst is the UTI, but when you have tested, it’s negative. I just get the side effects of UTIs, so can’t have any medicine as there is no infection, hmmm. It’s easy to take. I’m on 20 mg daily for 10 years as I’ve had invasive lobular breast cancer and had some lymph nodes removed as well. The only good thing with this drug is I haven’t had a period in five months or any period cramps. I’m 52 years old and was not menopausal, but I’ve found different brands give different side effects, and trying to get the brand you prefer is much harder than people think. This is a potent drug that is doing at the minute what it’s supposed to do, so I will carry on taking it."

• Hap...
• Taken for 1 to 2 years
• April 1, 2018

For Breast Cancer "I have been on this drug for one year. Have pain, weight gain, lack of sleep, tiredness, but I am alive. I think it gets easier as time passes. I try to remain positive."

• Ina...
• Taken for 1 to 2 years
• November 22, 2020

For Breast Cancer "I can relate to leg cramps at night, severe back pain, and insomnia. I’ve picked up a lot of weight and feel constantly swollen. Anyone else with these last two symptoms?"