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...
Hi,
I was recently diagnosed with a Prolactinoma and am trying to decide what my next course of action should be. My main area of concern is the horrible headaches I have been having - I had thought I had chronic sinus infections but now know what was causing them. Does anyone else have these awful headaches and what do you do for them. I'm sure I will be a little rambling in my question but this is all new to me and I am frustrated with the consult I had with an endo and the options for a different one are relatively limited in my area. Are these headaches a concern? Does it mean something needs to be done immediately - will they cause permanent damage to my vision? I took cabergoline for 2 weeks and it made me feel horrible - barely functionable so next week I am starting on bromo but these headaches have me worried and when I asked the dr about them his comment was "you are only at 9mm - I have seen 5cm" so I felt as though he was saying I had no reason to be complaining. He won't give me any strong pain meds, prednisone seems to help some but he only likes it in short doses and wouldn't prescribe any because he said I have to go thru my primary care dr because he will get in trouble if he prescribes anything outside of medication for my tumor. I have many questions as this is all relatively new but the headaches are my first concern as they make me feel completely pathetic and all I want to do is sit on the couch. I appreciate any info or feedback anyone is willing to share. Thanks
I was recently diagnosed with a Prolactinoma and am trying to decide what my next course of action should be. My main area of concern is the horrible headaches I have been having - I had thought I had chronic sinus infections but now know what was causing them. Does anyone else have these awful headaches and what do you do for them. I'm sure I will be a little rambling in my question but this is all new to me and I am frustrated with the consult I had with an endo and the options for a different one are relatively limited in my area. Are these headaches a concern? Does it mean something needs to be done immediately - will they cause permanent damage to my vision? I took cabergoline for 2 weeks and it made me feel horrible - barely functionable so next week I am starting on bromo but these headaches have me worried and when I asked the dr about them his comment was "you are only at 9mm - I have seen 5cm" so I felt as though he was saying I had no reason to be complaining. He won't give me any strong pain meds, prednisone seems to help some but he only likes it in short doses and wouldn't prescribe any because he said I have to go thru my primary care dr because he will get in trouble if he prescribes anything outside of medication for my tumor. I have many questions as this is all relatively new but the headaches are my first concern as they make me feel completely pathetic and all I want to do is sit on the couch. I appreciate any info or feedback anyone is willing to share. Thanks
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I had pretty bad headaches and only have a 4mm Prolactinoma and as far as I'm aware 9mm isn't "small", though I don't think it's considered large (microprolactinoma is 9mm and under and macroprolactinoma is over 10mm). I still get bad ones even though I'm on Cabergoline. When I was pregnant my Dr prescribed me Codene to have with Paracetemol and that worked ok for a while. I'd keep complaining to any health proffessional who will listen to you. You never know who might know more than the next person and some can be very blase about it, especially if they deal with it on a daily basis. You can have a vision field test done to check your sight. when I waspregnant and my tumour grew to 12x14mm and within 1mm of my optic nerve and there was no effect to my vision. Only you know your head and your body, no one else can tell you what you should or shouldn't be feeling. Keep complaining, someone will listen to you.
I was diagnosed with a piturity tumor when I was pregnant with my second child, which at that time, was the size of a pin head. I was put on bromocriptine, which made me violently ill. I only took the medication for a month or so, as I couldnt stand being ill. Then when i tried to get pregnant again, I couldnt, so, the took blood samples, and found that I needed to go back on the bromocriptine. After being on that medication for several months, I finally fell pregnant, but had to stop taking the medication through the pregnancy. Then several years later, I began to get severe headaches, no menstral cycle, lack of libido..... This went on for 17 years, when I finally decided to get it checked out again. My GP, sent me to have an MRI, then was sent to a neuro surgeon, who informed me that the tumor was inoperable. At that time, the tumor was 5cm x 4cm. I was put on Cabergoline, and had to have MRI's done every 12months. So, to this day, I am still taking the Cabergoline. The worst part of dealing with this tumor, is the headaches, caused by the tumor pushing against my optic nerves. Not realising that the headaches were caused from the tumor, I took and pain medication I could get on script, sometimes it worked and other times it didnt. I just put up with the headaches, leaving me feel like a vegetable most of the time. My specialist told me, that if the tumor doesnt shrink in size, and is left untreated, it would eventually cause blindness.
Moonempress, you are so brave! I wish you the best and hope that the tumor starts to shrink. I wonder if there is anything alternative that you could do?
I am pretty much right at the moment "I think". I know I should get another MRI done, but I hate those things with a passion. Now at the age of 48, and going through menopause, I need to keep a close eye on my levels. But at times, I just don't care about the tumor.
I am suffering with depression, a bad marriage ( has now ended), adult children that just use me, and high blood pressure.
I hope you can get yours under control, and get it to shrink. They are a pain. Wow!!! you get concussions!!!! You poor woman. How do you cope with that? And the period thing, I never had one for 17 years, then they come back in dribs and drabs, then, it all stopped, due to the menopause.
But it never ceases to amaze me, that people whom do have a prolactinoma, all have different symptoms, and how bromocriptine and cabergoline works for some but not for others.
I wanted to tell you I was just prescribed Topiramate which is generic for Topamax that is used for migraine headaches. I have only taken it for 2 days before I go to bed but when I wake up I do not have that pressure behind my eyes feeling for about 1/2 the day then it starts to wear off. From what I read you are supposed to start on a low dose -I am on 25 mg and work your way up to as much as 200 mg - but this is the first thing I have taken that has relieved that horrible feeling that my head is going to explode from the pressure so I wanted to share since you mentioned the same headaches being a problem for you. I visited my primary care physician Friday & he was very understanding of the headaches - he also prescribed Fioricet which does nothing for the headaches because I had been taking Darvocet which is off the market now so I will need something different there but I am a little excited at the slightest bit of relief - maybe you could talk to you dr & try this medicine and see if might work for you. Best of luck.
I can't take any of the medications because I'm on one that neutralizes it. There's nothing they can do for it other than watch it. My most recent concussion was 2 years ago and I'm just now starting to feel more like myself. I need to wear a helmet 24/7!
Reminds me, I forgot to ask for a prolactin test yesterday at the doctor's. 6 months now without a period though I keep feeling like I have PMS so it seems my hormones are messing with me. Nothing like having acne past 40! Keeps me looking younger, maybe?
Good luck on the road back to yourself after a bad marriage. I've been on that road for 2+ years now and it really can be tough. Even though the marriage was bad and my love for him ended long before we split up it was one of the hardest things I've ever been through. I wonder if it's social conditioning or making oaths, feeling like a failure or what that makes it so complex. Sending you good vibes :)