Increased migraines on tamoxifen

I’ve experienced an increase in migraines recently and wondering could tamoxfien be contributing/ causing them? Has anyone else experienced this? Did it settle? I’ve got to take it for 10 years and I’m still well pre-menopausal.

I started getting migraines with aura about 10 years ago in my early 30s. Some years I had none. The last 3-4 years, I’ve had 1-2 a year. This year I’ve had 4 between September to December, including 2 in the last 9 days. The very first one in September can’t be tamoxifen driven as it was the day before I started to take it (relaxing during reflexology seemed to spark it!). But I’m wondering about the others given I’ve never had them this frequently before. The pattern of the aura and headache hasn’t seemed to change.

Every time I think I’m relaxing into life after my initial treatment and feeling optimistic, something like this pops up and I feel scared again. I can’t deny a bit of me worries about cancer having spread too.

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Dear Rainbowcat,

So sorry to read you are having a tough time at the moment, this could be tamoxifen, or stress related I think you should call your breast cancer team tomorrow, hopefully someone should be able to point you in the right direction,

We all run away with our thoughts, when something starts to worry us. I do hope you get sorted very soon.

Best wishes going forward.

Hugs Tili :rainbow::pray::rainbow::pray:

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Hi Rainbowcat

I would edge towards hormones changing. I have PCOS which is known to have increased Estrogen, and my symptoms which included bad headaches were made better when I had a hormone coil fitted. All was well for many years as it was regulated but as the lifespan of the coil was coming to its end, they started to intermittently come back, and the last 4 months before my diagnosis they were migraine strength.

Coil is now removed on doctors advice and have been on Tamoxifen nearly 3 months. No improvement with head on last cycle, but the past 3 weeks have been trouble free so I’m hoping, there might be a benefit on Tamoxifen. Fingers crosses!

It’s best checked or run it past your medical team. They might be able to give you something to reduce the symptoms. X

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Thank you Tili. I will drop them a message today and hopefully I can get some guidance. X

Do you know @sal1 I’d never even considered that my PCOS could even play into this too?! Thanks for mentioning this. I’ve been on tamoxifen a similar amount of time and hoping that things might settle down. Fingers crossed for you too! The headache strength has been fortunately mild, it’s the visual aura beforehand that shocks me every time. X

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Hi rainbowcat,

Thanks for posting.

It’s understandable you feel scared about the increased frequency of the migraines you’re experiencing. It’s difficult to say whether the tamoxifen you’re taking is contributing to this. As the aura and the pattern of the headaches haven’t changed, this might suggest that there may be other causes such as stress that @Tili mentions. As both @Sal1 and @ Tili say, it’s important that you call your breast care team as they are best placed to assess your symptoms and discuss what might be causing them. You may also want to keep a migraine diary to see what may trigger your migraines.

Nearly everyone who has been treated for cancer worries about it coming back (recurrence) or spreading and you’re not alone in being anxious about this. The uncertainty and fear of breast cancer returning is very real and adapting to life after treatment can be difficult and often the need for information and support continues.

Dr Peter Harvey a Consultant Clinical Psychologist wrote about how people can feel after treatment has finished. Although the article is many years old and not specific to breast cancer the emotional issues discussed remain relevant. You can read this through the following link After the treatment has finished - Then what?

Some people benefit from talking therapy, such as counselling, to explore ways of managing these worries and concerns. You can speak to your GP or treatment team about this. Mindfulness can also be helpful.

You may also be interested in our resources that are particularly for those who have come to the end of their main hospital treatment. These are known as our Moving forward services and include our Moving Forward book and Moving Forward courses.

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

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Best wishes

Vic

Breast Care Nurse

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