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Crazy Emotions with Prolactinomas - Studies

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  Recommend Message 11 in Discussion
From: PedsProf

Stephanie,
 
I second Minnie's suggestion about Dostinex (cabergoline). 
 
I took bromo for seven years, and because my prolactin levels were always in the 40's and 50's on meds, my dose kept going up, to max of 10 mg (4 tablets) per day.  My original prolactin reading (89) was nowhere near as high as yours, so the hormonal reshuffling that Minnie describes was on a far smaller scale for me. 
 
A month ago, I switched to Dostinex, because I was so miserable on the bromo (nausea, postural hypotension, fatigue -- things that were interfering with ability to do my job).  
 
Before switching, I was embarrasingly non-compliant, and stopped the bromo completely.  NOTE -- I DO NOT ADVISE THIS -- KIDS, PLEASE DON'T TRY THIS AT HOME!!!   I had a stomach bug for a couple of days, and could not eat sufficient amounts of food, so I was not taking the bromo.    Once stomach got better, I realized how much better I felt without the bromo, so I decided to see if that would last.  I notified my endo and scheduled appt, so he was aware and it was semi-supervised.
 
For a couple of weeks, I felt great -- clearer-headed, blissfully free of the nausea, and not lightheaded or dizzy.  I gradually began to feel worse as prolactin climbed -- out of the 40's and up over 100.  Within six weeks, prolactin was 120 and I'd packed on 10'lbs.  You can't really gain weight that fast even if trying!  Even if it was Christmas!
 
I began to feel better within first couple of doses of Dostinex, and have continued to feel better without any side effects.  First blood draw to recheck prolactin is in two days, with monthly checks ongoing for a year.  I'm a little frustrated --- had I known how much better I could feel, I would have insisted on a change years ago.  Only a little frustrated, though.  More importantly, I am grateful to know that the med change was every bit as good as I'd hoped it could be.  Heck, after bromo, I would have been pleased with fewer side effects:  to have none is, well, bonus!
 
All this is to highlight what Minnie has already said (a lot more clearly than I have):  1) high prolactin can trigger a host of woes -- many of those you describe - and many that are the same as some of the med side effects
 
2) if one med disagrees with you, ask about trying the other one.  Dostinex has bested bromo in most of the side-by-side clinical comparisons; although experiences of other posters is that bodily preference may be more random.  I have seen equally as many posters who started on Dostinex and are happier on bromo.  I do suspect that a number of posters have had side effects due to doses that were too high (yours!), or were initated and increased too rapidly (this is especially important with Dostinex, as it lasts for a longer time in your body).
 
3) once you change the mix by lowering prolactin, everything else must readjust -- think of tossing a brick into a pond.  The bigger the brick (dumping prolactin levels by 900 points!!!), the longer it takes to settle down & become calm again.   
 
Good luck with alternatives. It is very good news for you that your prolactin levels are so responsive to the meds -- some folks here are less fortunate in that regard.  I hope that by now you are perhaps taking Dostinex and feeling better!

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