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Help with prolactinoma/rathke cleft cyst and headaches

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sam40496
sam40496

Need some advice. Since last year I was diagnosed with either an 8mm prolactinoma or rathke cleft cyst. The consultant is not sure. I have been taking cabergoline weekly which brought my prolactin levels down quickly and all the side effects from the that went very quickly. My issue now is that I am getting persistent headaches. I wake up to it and has been going for 3 weeks now. It varies in severity and is always centred at the front of my forehead, mainly around my right side but does stretch across. Even if I take some OTC meds it is still there when they ease off. On about half of these days I have also been experiencing a sudden shooting pain in the right side of my head that makes me stop and hold my head for a moment. It only lasts a few seconds but is happening once or twice a day then I don't get it for a few days. It is now affecting my work. Phoned my consultant and she just got her receptionist to phone me back saying I should see the gp as it can't be linked to the mass. Im waiting for appt now.

Really not happy with how I have been managed through this consultant and currently thinking about requesting to change as had a catalogue of issues with her with misdiagnosis and other errors.

My main question is should I be worried about these headaches and has anybody experienced the same thing? I understand my mass is small in the grand scheme of things it's just getting unbearable now. Am fed up of being messed about.

0 likes, 3 replies

3 Replies

  • tari1
    tari1 sam40496

    Posted

    hi, with all the drugs i have taking that has to do with issue of high polatin i think der side effect are mostly headic what you only need to do is to be taking the drugs only when you want to sleep at night that is d best way out

     

  • cherrylann24684
    cherrylann24684 sam40496

    Posted

    You don't have a tumor on your pituitary gland? That's what caused mine for 30 years! Wish you well because headaches suck! Ask your doctor about Botox injections.

  • Francie123
    Francie123 sam40496

    Posted

    I would ask for an MRI so you and your doctor can see what the size of the tumor is and if it  pressing on something. 
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