Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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Endocrine System
/ Prolactinoma Support Group

Can't tolerate meds

SitoriTenshi
SitoriTenshi
When I was 15 I was diagnosed with a small prolactinoma. I have tried Cabergoline and Bromocriptine and have not been able to tolerate either. During the time that I was on these medications I was experiencing dizziness and I was very light headed. I tolerated the medication so badly that I cannot really remember much of the period of time that I was on the medication. We tried very small doses and I found little relief. Frustrated, I quit the medication.

That was my Junior year in high school and I am now a Freshman in college. I have not been to a doctor in far too long. I have tried Cabergoline again more recently at about 1/4 a pill once a week and still had issue. I stopped taking that as well.

Has anyone else out there had trouble tolerating the drugs like I have? I have no idea why I have been unable to tolerate the medication, but I do show the same pattern with most other medications. I have a very low tolerance for any prescription medication.
newmommy42
newmommy42
Yes, I am extremely sensitive to medicines. And I was really sensitive to bromo but less sensitive to dostinex/cabergoine. I have to take them only at night so I can sleep thru most of the effects. Have you tried that?
deleted_user
deleted_user
Hi...I also really really battled with the medication...was on the lowest possible dose and still felt very dizzy, fuzzy headed, nausea etc..best to take at night with food and sleep well. I cannot drink any alcohol and do not take anyother medication because I am so worried about drug reactions...still after 3 months the side effects are less and hopefully will be gone or i will be used to it soon..hang in there, because although the tumour is a slow growing one it can affect eyesite and fertility..so best to sort it out!
SitoriTenshi
SitoriTenshi
I have taken it before bed but I usually have to get up early for class. It's difficult as a college student to be on the medication because studying and school keep me up late and if I took the medication too late then I would end up still feeling incredibly awful in the morning. And even when I did go to bed early and take it, I would still not feel right in the morning. It makes me feel like there is no hope.

Also, I had been without symptoms for a long time. I have not been producing milk, my libido no longer suffered and I was feeling better. I just found today, however, that my milk production has started up again.

I just feel awful and hopeless. I'm hoping to get married soon and so the possibility of infertility is weighing on my mind and the prospect of suffering through meds again is making me feel terrible about things.
deleted_user
deleted_user
I know exactly what you mean...it is the anticipation of the side effects and trying to find the stenghth to go on...Have you had another MRI scan...sometimes surgery is an option for those who absolutely cannot tolerate the meds...speak to your endocrinologist..there are options...
SitoriTenshi
SitoriTenshi
I haven't been for another MRI but I am going to get one probably in August. I've actually asked them to do surgery because I was so done with the meds but I couldn't find a doctor who would agree. None of them wanted to do it because they are afraid of damaging normal pituitary function.
deleted_user
deleted_user
i had to start at the lowest possible dose of dostinex...kept that for 3 months...now have to slowly increase..side effects def not as bad..still have the fuzzy head and headaches and some really bad anxiety attacks....which i never had before....but the endo told me that this is a looong slow process...should take 2-5 years...other surgery is gamma knife....good luck....i know the meds are bad...dread the next dose eachtime..am also very busy..studying for a phd..family etc etc...
deleted_user
deleted_user
I know it was pretty bad for me. When I started the dostinex my doctor told me right out front that it will take 6 months for body to adjust and the side effects to go away. So he would not entertain trying anything else until the 6 months where up. Anyway thing did get much better by that time.