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How do headaches caused by Prolactinoma feel and what causes them?

By Anonymous August 28, 2015 - 5:05am
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My girlfriend has been managing her Prolactinoma very well through medication, diet change and supplements and I'm VERY proud of her! Sometimes she gets headaches that feel like they're behind her eye and she says she "knows" they're being caused by her tumor. This obviously is frightening and often disheartening. But her tumor is shrinking and her prolactin levels are dropping, so this could also be just sinus pressure or any number of things.

I'm wondering if anyone could explain their experience with Prolactinoma induced headaches so she'll really know if these are related to her tumor or not.
How do they normally feel?
Are they only caused by large or growing tumors?

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I had increasing headaches that I was told by my doctor were Migraines, They were so painfull that I could cry. As these became more and more common I realised that sport and vigorous movement could bring them on. Finally I went to a neurosurgeon I knew and he organised a scan. When the results came in he sent to Barts hospital to see professor Monson. He put me on to cabergoline tablets and I have never had a headache since. My levels are back to normal and my pituitary gland has reduced to the normal size. I have been taking the drug for 15 years. Peter Glendining

December 29, 2018 - 11:11am

Hello Anonymous,

Welcome to EmpowHER and thank you for reaching out to our community for personal experiences with a prolactinoma.

For the benefit of all our readers, prolactinoma is the most common type of hormone-producing tumor that can develop in your pituitary gland. It is a noncancerous tumor or adenoma of the pituitary gland and causes overproduction of the hormone prolactin.

The symptoms can result from excessive prolactin in the blood, which is called hyperprolactinemia, or from pressure on surrounding tissues from a large tumor. Because elevated prolactin can disrupt the reproductive system, referred to as hypogonadism. Some of the signs and symptoms of prolactinoma are specific to females or males.

Low bone density, decreased libido, headaches and visual disturbances are symptoms shared by both females and males.

Left untreated, a prolactinoma may grow large enough to compress your optic nerve.

Anonymous, I am glad to hear that the tumor is shrinking and prolactin levels are decreasing. But, your girlfriend really needs to tell her physician about the headaches. Better to be safe than sorry.


August 28, 2015 - 8:19am
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