Cabergoline Side Effects

FormerMember
FormerMember
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Hello all, 

This is unusual for me as I'm a very private person, but after a long discussion with my partner about not having to shoulder the burden I thought I'd reach out to see if there is anyone who shares any similarities with my story. I'm in my early 30s and was diagnosed with high prolactin (7000+) about a year ago - it was a surprise as I'd gone to the doctors after becoming fed up with weight gain, depression, anxiety and all the bedroom issues that go alongside high prolactin for us gents. After the surprise on the blood test results I was pretty swiftly scheduled for an MRI, which didn't find anything conclusive but my consistently high prolactin levels meant the docs were pretty sure there was something going on, and that with any luck Cabergoline (Dostinex) would sort it out. 

A year on and I can say that broadly speaking things are much better, I shed 60lbs in weight and things in the bedroom have improved dramatically. The problem is I have been having a really rough time of it with the side effects of the tablets - the dramatic mood swings and headaches have subsided (thank god!) but every now and then I'll wake up one morning with every side effect on the box - tingles, palpitations, insomnia, lack of appetite, mood swings - the works. This lasts for usually a couple of days, sometimes longer, and it is becoming unbearable. Does anyone else struggle with this? Has anyone come up with a strategy to deal with any of these side effects?

Part of the problem is that I work overseas for much of the year which means I don't have regular contact with a specialist, and the specialists I'm able to see on the very rare occasion while I'm out of country can leave a lot to be desired... Has anyone been prescribed anything by their doc which helps mitigate the side effects? I'm willing to try anything at this point - annoying as I know that bromocryptine is the only other option and it's far less well tolerated than the tablets I'm on now.

Anyway, thanks if you've got as far as the bottom of this ramble! Any advice/stories would be greatly appreciated.

Cheers

  • FormerMember
    FormerMember

    I have been on Cabergoline for about 4 years. I have a Macro Adenoma producing prolactin. Yes I have simular effects from It.  Extreme fatigue, It invaded my sinus and wrapped around carotid artery so no op on the table. Causes lots sinus pains in autumn and winter. Also had stabbing pains on left side of my brain behind left eye for years. The Cabergolin shrank my tumour by 40% in the 1sr 6 months then it just held steady ever since. Did have Nausia and I get nerve pain in various parts body at times. It does mess with my head a bit.  The headaches I got were called peroxsmal hemicrania. These are not headaches there agony and you get them everyday several times a day for 3 months a a time. 

    You not alone 

    Trevor

  • FormerMember
    FormerMember

    It took me around 2 years on cabergoline to get used to the side effects. It made me bedbound for 2 days after each dose initially. Now 3 years after starting it I just suffer with tiredness and headaches the morning after which are manageable and I have been able to go back to full time work ( I had to go part time for a while). 

    The cabergoline has had no effect on my tumour however or my prolactin levels unfortunately. 

    Stick with it. Hopefully you will start to settle on it. 

    Take care 

  • Im awaiting confirmation i have this condition and have the same symptoms rubbish !! Sad there doesnt seem much support i can find atm 

  • Hi, ive been on cabergoline for almost a year. I noticed the severe side effects of fatigue and mood swings happened when i took medication in the day. I switched to 9/10pm taking the tablets with food and it was a game changer for me. Also when changing medication amounts i experienced headaches and violent vomiting which took about a month to come out of. Hope this is helpful.