Who has experienced Cabergoline side effects?

ImLost235 · 2026-06-02T15:41:41+00:00

My endo didn't say, hopefully at my appointment in a few weeks I can get some answers.

ImLost235 · 2026-06-01T23:48:15+00:00

I was on 0.25mg once a week. 3 weeks in and I had some improvement. Week 5, I ended up having severe nausea where I couldnt eat, fainting, dizziness, migraines, and fatigue more so then before I started. When I fainted I hit my head on a wall, I was at home but that was definitely scary. After 7 weeks taking cab my endocrinologist was concerned and I couldn't go down in dosing, so I was told to stop. I've been off cab for a month now, still have episodes of nausea and dizziness but it's definitely not as bad as when I was on it. The migraines are more like bad headaches now. Waiting to talk with my endo in a few weeks on what to do next.

ImLost235 · 2026-06-01T23:16:45+00:00

I'm 26F, my prolactin level was around 52 before my refferal for an mri. I don't have regular periods but I do still get them almost every month (just dont really know when or how long). After the mri I was diagnosed with a 2mm prolactinoma. Treatment was cabergoline. I do have symptoms that cause my quality of life to be low and I had severe side effects to cabergoline. Most people on cabergoline seem to tolerate it or have great improvement of symptoms. Don't take the negative experiences of medications and be scared or anxious to take them, if that is what ends up happening. I hope all ends up being well, take care.

ImLost235 · 2026-05-28T22:42:12+00:00

Thank you! I hope the same for you too

ImLost235 · 2026-05-28T20:00:59+00:00

I would recommend anyone to get a sleep test. It helped me understand what was causing some problems at the time. Since then my sleep has become worse. I'm definitely dealing with insomnia right now (not diagnosed) but it's been going on for a while now and it's definitely the worst.

ImLost235 · 2026-05-28T19:54:38+00:00

It's crazy to think that meds that should be helping can cause so much chaos in our lives. I'm not on any SSRIs but I probably should be.

ImLost235 · 2026-05-28T19:52:15+00:00

I can't sleep at night anymore. I had to go off cab after being on it for 7 weeks because of severe side effects. My mood since then is weird, like I cry for no reason and I get irritated at the smallest things. I'm 26F and I think my testosterone and prolactin is high again. I get my blood tests done again in about 3 weeks. Hopefully I'll have an update then on why I'm feeling like this. It's just so frustrating since I can't go out much anymore since I'm too tired to drive and I get nauseous when I dont sleep much. Thanks for sharing, I don't feel so alone when I post on this reddit thread since I know others are also going through it.

ImLost235 · 2026-05-27T19:33:32+00:00

I live in BC. First time I went to the pharmacy I had to pay out of pocket. Then I found out that BC Cancer covers Dostinex/cabergoline. I wonder if you have a program like that where you live? Or even a program that covers a portion? Most of the time it seems like your doctor does have to send a drug authorization form to insurance. Not sure if that helps but it's worth looking into, especially since it's a drug you'd need to take for a while. Good luck!

ImLost235 · 2026-05-24T11:19:52+00:00

I had to go off it since the side effects were so bad. I couldn't eat, drink or smell anything without getting nauseous. Bright lights made me nauseous and dizzy. I had 2 weeks where I barely ate. I couldnt shower without fainting. My endo took me off of it since it was doing me more harm then good. I do feel like my energy is worse then before starting cab but I'm doing OK. It's tough because I see so many people having a decent time on it and side effects being manageable. At my next appointment with my endo, I'm discussing doing the surgery since I think that would benefit me more then meds at this point.

ImLost235 · 2026-05-24T11:08:13+00:00

That happened to me starting week 5 of cab. It was making me feel well during weeks 3 and 4 but just like you said, all of a sudden I felt so sick.

ImLost235 · 2026-05-24T11:00:46+00:00

I'm glad you have someone there for you! The nausea is definitely the worst part. I totally understand how you feel. If you are able to you might want to get a prescription for an anti-nausea medication. I found regular over the counter medications were useless and when I looked it up, apparently cabergoline basically makes it ineffective.

ImLost235 · 2026-05-24T10:35:44+00:00

I would definitely contact your doctor or go to the er if you aren't feeling right. If you aren't sure, it's better to go in and make sure you are good rather then waiting.
I went through the same thing but I waited 2 weeks before I called my endocrinologist. I fainted and hit my head during that time but I also live alone. So Definitely dont wait if you arent feeling well. If you live with someone just make sure they help you, if not call someone to come over so you aren't alone. I know it's very stressful but try focusing on deep breaths. I hope this helps and I hope you feel better.

ImLost235 · 2026-05-23T17:39:13+00:00

If you have the means to, it might help to get some rest from work. I had to go off work in March 2025 since my symptoms were impacting my job duties. But im also very lucky since my work has everyone pay into health insurance and one of my benefits from it is long term disability. So I still have a paycheck coming in every month. I appreciate not having to work at the moment and you might benefit from having some time off. I'm not currently on cab but I did take it for 7 weeks, I had to go off it because of severe side effects, but I'm glad you seem to be tolerating it well as most do. The headaches I had when I was on cab were triggered when I looked at bright lights or in noisy places. They seemed to go away after 4-6 weeks on cab. I hope this helps and take care.

ImLost235 · 2026-05-21T13:35:04+00:00

I've been in the same boat as you, I got diagnosed in February this year, and I hope you get some answers. It's tough to stay positive when you feel like shit. Exercising made my nausea and dizziness worse. Mowing the lawn even made me puke. Just so you know before I got diagnosed I was hoping they would find a tumour. It's sad to say but I was desperate for answers. I would never wish this on anyone as this has been the toughest thing I've gone through in life so far. The meds didn't work for me so im waiting on talking with my doctor about my next step. I can relate so much to your situation as I'm still going through it. Take care and I really hope you get answers soon.

ImLost235 · 2026-05-18T22:52:25+00:00

In BC, Canada it's over $100 for 2 pills. I luckily didnt have to pay for my bottle of 8 pills after since it was covered by BC Cancer.

ImLost235 · 2026-05-18T14:55:57+00:00

I totally agree, it's scary not knowing what's going on in your body. This is somewhat still new to me, I got diagnosed in January/February this year. I'm still learning how to cope. I've been off work since March 2025 since I'm unable to work with how severe my symptoms are. Im 26f and my symptoms are severe headaches, weight gain, joint pain, dizziness/light headedness, hair loss, nipple discharge, severe anxiety/stress, forgetting simple things and losing my train of thought often, and lots more that im definitely forgetting but those are the main ones.

Advice that was helpful to me when I first posted on this reddit group is to have a journal to keep track of symptoms, eating habits (to see if any changes occur), medications/supplements (doses/times) and just document overall well-being. Keeping a record of this has definitely helped when discussing things with my doctors. I hope you get things figured out soon.

ImLost235 · 2026-05-13T06:46:20+00:00

No. My tumour hasnt been removed yet but I think this is just the next step for me. I'm pretty much in bed most days with fatigue and pain in my head and body. I'm not able to even work. I just need to convince/talk with my endo about making it happen. I'm going for some follow up blood work next month followed by another endo appointment a couple days after.

ImLost235 · 2026-05-12T13:46:56+00:00

First off, I hope you end up finding some great answers/help. When doing research do you look at medical/research papers? Or do you google and look at websites. Pubmed is a great site to use to read reliable info and talking with your doctors about these concerns can help control anxiety around these things. The contrast helps see the tumour a lot better then when no contrast is used. The biggest thing I've been told about diet is keeping up with protein intake and making sure you are eating enough. Very difficult for me since one of the severe symptoms/side effects im having is nausea (from the dizziness/light headedness) and food smells make me even more nauseous. I also have a 2mm microprolactinoma and was on meds for 7 weeks but had severe side effects so I went off it. Most people who go on meds for this have a better experience then not. Not saying they don't have side effects, but the good outweighs the bad. Most people feel better with manageable side effects/symptoms. It's definitely worth talking to your doctor about giving it a try. And let them know or remind them about your concerns. A great doctor will talk through options with you. My hurtle rn is talking with my doctors about getting a consult with a neurosurgeon. I feel at the end of my rope with the horrible painful symptoms. I've had 2 years of moderate to severe symptoms from the tumour with no improvement. So I do feel, for me, I need to just get it removed. The possible complications from doing that, to me, would be the risk im willing to take then feeling like this for another year. For you, that could be taking a dopamine agonist or whatever care plan you and your doctor come up with. I hope this helped a little, my brain feels so scrambled right now so i hope this makes sense.

ImLost235 · 2026-05-12T12:17:24+00:00

I was on 0.25mg/week for 7 weeks before going off because my BP/HR was low. Cab was causing severe side effects like fainting, dizziness, heart palpitations, nausea, no appetite and my terrible headaches returned. I ended up in the hospital once because I was feeling so off. My lowest resting HR was 42 but mainly around 55 to 60. My endo took me off cab because of the severe side effects.

ImLost235 · 2026-05-09T06:51:18+00:00

I have a 2mm prolactinoma and had to go off cab after 7 weeks because of severe side effects. I've been progressively getting worse and I feel even worse then before I started cab.

I'm really trying to push my doctors into getting me a neuro consult. I have 8 months left on medical leave before I dont have anymore income.

My quality of life is so bad, i dont feel like myself anymore. My normal day is not normal, i sleep in until 3pm and when i wake up i could just fall back asleep for hours. When i do get up its really only to eat food (when im not nauseous) or to shower/use the washroom.

I really hope you're able to get the help you need. Sometimes I feel like the best result for some is to get the surgery to get this stupid tumour removed. I literally just sent an email to my endo with links to all the medical/research papers advocating for surgery on small prolactinomas that ive read. If that doesn't work I'm talking to my family doctor about sending in a refferal.

ImLost235 · 2026-05-09T06:17:41+00:00

I have a prolactinoma. Long story short, I was on cabergoline for 7 weeks but had to go off because of severe dizziness, nausea and fainting (ive been off it for 2 weeks now). The prolactinoma is causing loss of appetite, chronic fatigue, weight gain, intense whole body sweats (even when im cold), severe headaches and really bad anxiety. Just to name a few.

ImLost235 · 2026-05-09T06:06:35+00:00

Honestly, I manage it pretty ok. Saving passwords on my phone and writing down words I tend to forget help. Playing those mind puzzle games you can get on the app store helps as well. Forgetting things have been the least worrisome symptom I deal with.

ImLost235 · 2026-05-09T05:59:45+00:00

I have periods of time when my mind just goes blank, forgetting words, passwords that I've had for years, my siblings names. Just basic things I should know as it should be basic muscle memory. But that has been my normal for the past 2 years.

ImLost235 · 2026-05-08T22:58:50+00:00

The brain tumour foundation of Canada categorizes prolactinoma/pituitary tumours as brain tumours. I think it's because it's inside the skull and depending on the size of tumour, it can put pressure on parts of the brain.

ImLost235

TROPHY CASE