Tamoxifen and Headaches

Hi Everyone I started Tamoxifen about 21/2 weeks ago and since then I have been getting really bad headaches. They started off just the odd one or two, but this last week they have increased in frequency and I am now getting them all times of the day and night - I even wake up in the middle of the night with a headache! Sometimes it just feels like a burst of pain exploding in my head and it is gone in an instant and other times it lasts longer. Has anyone else experienced this on Tamoxifen at all? I have rung my BCN and had a chat and they had told me to stop taking it for a month and they are referrring me for an MRI. Just wondered if I should be worried or if it is a side effect (along with all the other stuff like hot flushes etc)? Any feedback gratefully received. Will be back on the phone on Monday to my BCN again I am sure! (Will feel like a muppet if nothing wrong and I am just panicking!) Em x

Hi Em,
I’ve been on a combo of tamoxifen and herceptin since Sept 2011, I suffer with really bad migraine headaches and after a lot of worry and scans (i have ct and mri scans every 3 months because I already have secondaries on my lungs, I’m stable at the moment) it appears to be hormone related migraines. I wake up with the headache and the reason I believe they are migraines is because I also suffer with nausea almost immediately that the headahce appears. The Tamoxifen is messing with your hormones or rather blocking the receptors on the cancer cells from feeding on the estrogen anything that messes with hormones is tricky BUT please remember tamoxifen is a tried and tested breast cancer drug and really does work. Headaches are intolerable and totally debilitating so you need to deal with them, my GP prescribed sumatriptan I take one as soon as the headache appears and then it doesn’t develop into a full blown migraine I’m a bit spaced out afterwards but this stuff really does work on migraines, failing that I take a co-codamol again my GP presecribed both of these and so far so good as time has passed the headaches have become less frequent and are now an occasional blip. My advice to you is after your scan and good results to continue on the Tamoxifen and take extra tablets for the headaches. Hope your scan goes ok and if you need anymore advice about headaches please contact me via private message. The hot flushes are a real pain but again as time passes they calm down (she say’s after having a wicked one) lol. Honest they do calm down. Sending you lots of love and light Sarah xx

Hi I’m now on my 6th year of tamoxifen and I have definitely found bad headaches to be a side effect. However be careful what you are taking for them. By the time I went to the gp I was overusing paracetamol, ibuprofen and codeine, all of which cause rebound headaches. Doc told me not to take any of them, gave me a prescription for sumatriptan, and advised eliminating migraine triggers such as caffeine, cheese and chocolate. I also increased my fluid intake and after a week or two they got much better. I reckon tamoxifen wirks as a bit of a diuretic on me, and I really have to drink a lot of fluids to stay sufficiently hydrated. I still get bad headaches every so iften, but the frequency has decreased to a manageable level. Good luck and hope your mri is all clear.

Hi Sarah Many thanks for your lovely reply back. It has put my mind a bit at ease that it is probably all hormone-related. I have been having nausea for weeks now too and with the two combined it makes sense now. I have been advised to come off the Tamoxifen for 4 weeks and will have this scan (which I know will be a waste ot ime but at least they are being thorough) and then will need to go back on it as my cancer is very hormonre receptor positive - too risky to not take it. Have an appointment with the BCN clinic on 10th July to discuss menopausal symptoms so hopefully they will be able to give me something to help with all the other symptoms which I have had for six months now since finishing chemo. Thanks for your message - I will discuss it with my BCN. I am beginning to feel like I am losing my mind - the worry never goes away - and turning into a bit of a hypochondriac! Cancer has a lot to answer for! Thanks again. Em x

Hi Spookymoo,

think I’m in a similar position to you. Finished chemo early feb, started tamoxifen late feb. have had terrible hot flushes, nausea and sleeplessness. These side effects seem to have increased over time, not decreased as onc said they would. Onc recommended acupuncture, which I have tried, and found very good. I can’t afford it long term though, and it only works if I have it regularly.

More recently developed a headache that wouldn’t go away. I’d had a wisdom tooth removed, and saw an emergency doc over a weekend thinking my tooth hole had got infected. I was prescribed antibiotics, but told to go back to gp if it hadn’t faded within three days. I then saw GP who looked in my eyes and thought he saw evidence of possible swelling so referred me for MRI. I was pretty shocked and scared! That was three weeks ago now. Headache has not gone, sometimes worse, but never goes. It’s not a migraine, and taking painkillers does take the edge off it, but doesn’t get rid of it. I have also had days of total exhaustion and generally feeling ill. GP has looked in eyes again and now says he thinks they might be normal but isn’t sure!

phoned my breast care nurses team to ask for advice and all I got was"ooh that must be awful for you dear"… Great help that was!

MRI is tomorrow, but like you I think it’s all down to the tamoxifen. I was back at work and doing well, back to physical fitness, feeling like my life was getting back to some kind of normal, but the tamoxifen SEs were just getting worse.

This last three weeks has been an emotional roller coaster to say the least, but right now I’m thinking if it is the Tamoxifen, I don’t know how I can carry on taking it. I certainly can’t go to work like this! the only hope I’ve got at the moment is to try another brand, which seems to help a lot of folk. There are a few threads here on that theme, and it’s definitely helped some. My GP wants to try coming off for a couple of weeks if scan is clear, but I’m wondering if it might be more sensible to try another brand first. GP doesn’t believe the brand will make any difference.

i’d be really interested to hear how you get on, so please keep posting here. Hope your BCN appointment comes up with some useful advice. Know what you mean about losing your mind…keep thinking I’m making it all up and being a nutty hypochondriac, then realise I’ve still got a b****y headache!

I’m interested in these posts, as I have suffered from ore me trail migraines for 2 years, which I have been told is as a result of the impending menopause. I’m about to start Tamoxifen and feeling paranoid that the headaches will get worse. I agree with Bakeswhenstressed though, eliminating triggers and regular painkillers is a good idea.

Hope you all get some relief from these horrible symptoms, I really feel for you all. as if we all haven’t for enough to deal with, with bbc best wishes

Predictive txt, premenstral migraines is what I meant to say !!

Hope you dont mind me adding myself to the post. Ive been on Tamoxifen for 3 years and never had a migrain in my life. That is until 3 months ago. i found myself sat in work completely unable to consentrate or function.
Over the last 2 months Ive had an MRI scan on my head ( thankfully clear ) and now on detox from tamoxifen and anything else. Initially my GP told me Iwas depressed and havin g a break down. I wasnt I was up until this point doing quite well and getting my life back together.
I havent been percribed any thing to deal with the pain other than paracetamol and ibruprofen. So interested to see what others have been suggested as a remedy.
Good luck everyone x

Well, MRI has come back normal. Such a relief ! Headache is worse though, so now off Tamoxifen for a couple of weeks hoping that helps. Supposed to be back at work in a week’s time, but not unless head improves. Generally fed up. Was OK going through chemo thinking there was an end to it, and with the idea of recovery. Having to live with debilitating side effects is something else entirely.

How are others doing on a break from T?

After reading this forum, I believe my constant headaches are due to Tamoxifen which I’ve been on for 4 1/2 years. I did have chronic Sinusitis so had an operation last September, but still have headaches, worse at back of my head. My ENT thinks they’re migraines and has suggested Endone to my GP. Not that keen. See her this week. Thanks for all your input and good luck everyone. I now don’t feel so alone. Others think it’s stress but the headaches are still there when I feel relaxed and happy.

I’ve been on tamoxifen for two months and at first I thought it was ok and that I was going to have good luck with it. But not the case at all now. Along with hot flashes, emotional all the time, I’ve been experiencing terrible headaches non stop and they only seem to be getting worse. It mostly hurts in my temples and behind my eyes. My eyes are real sensitive to bright light. I have to dim everything. Phone, computer screen, tv’s, windows. 

I have an appointment with a neurologist next week. Not sure what they will say or do but I really don’t want to be put on more medication. At this point I am so done with taking medicine. I thought that after chemo things would go back to normal. I don’t even remember what normal feels like anymore. 

I get the same kinds of headaches.  I am calling my doctor this morning.  I have never had headaches on top and in the back of my head, only sinus headaches.  There is no doubt this is from the tamoxifen, not sure what other choices I have.  The headache kept me up all night last night.