There are 296 ratings for the drug: DOSTINEX in the Askapatient database.

The average rating for dostinex is 3.7.
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Key to ratings for dostinex:
5-Very Satisfied: this medicine cured me or helped me a great deal.
4-Satisfied: this medicine helped.
3-Somewhat Satisfied: this medicine helped somewhat.
2-Not Satisfied: this medicine did not work to my satisfaction.
1-Dissatisfied: I would not recommend taking this medicine.

                    
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 5  hig prolactin, for pregnancy Hey, Sorry for interruption. I have the same problem with high prolactin like you. My level is 60 firstly then 47 and now 80..I hope to have a baby and am wondering to take Dostinex.Your experices inspire me a lot.Do you continue to take the medicine after the pregnancy or stop it? Is there any relationship between Dostinex and your little girl's unlucky disease? Is she ok now? Many thanks if you can give me some advices. Good luck,Sonia F 30 0 days
2X W
7/8/2010
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History
 3   Depression, drowsiness, sever fatigue, anxiety, fat I have been taking the medication for about 4 months and have seen my levels drop pretty fast, but not fast enough to have a cycle which i havent had in years. I want to have a baby but since i dont ovulate i dont know when or if that will ever be possible. this has just been a nightmare for me, but finding this sight helps. To see that there are others having this problem really helps me cope. I just dont want to take medication for the rest of my life. I really dont know why this has happened. Has anyone consider surgery to remove the tumor or know anyone who has with success? I just want to know what other option are available rather than taking this medication. F 30 4 months
3.5 1X D
7/7/2010
Email
 5  high prolactin levels Nausea, dizziness, tiredness, exhaustion, depression, change in personaility,the day after i take it i feel like i'm hungover. It did work well in terms of that it brought my levels down from 3000 to 30,i also got pregnant twice while taking dostinex the first time just six weeks after starting it, previous to that i had no periods for 3yrs so it worked really well. It keeps my body regular but i find the side effects hard to deal with espically the tiredness but the plus side is it does work. F 34 15 months
0.5mg 1X W
6/29/2010

 5  Elevated Prolactin EVERYONE NEEDS TO READ THIS!!!!!!!! PLEASE READ ON........ THERE IS A LONG BLOG WITH THE SAME TITLE "EVERYONE NEEDS TO READ THIS!!!!!!!!" THE EMAIL ADDRESS HAS CHANGED WITH THAT BLOG, SO IF YOU NEED TO CONTACT ME, PLEASE CONTACT ME THRU THIS CONNECTION. SORRY FOR THE CONFUSION, I DONT KNOW HOW TO CHANGE THE EMAIL ADDRESS :) lol F 40 17 years
0.5 mg 1X W
6/24/2010
Email
 2  Pituitary tumor,Prolactin level:380 Unbearable headaches, nauseus, exhaustion, mood swings, anger, dizziness. I've been out of work for 3 weeks now. I'm not able to function on this medicine. I've seen 2 different endocronoligists and a neurologist. They keep telling me there must be something else going on with me and that it isn't the medicine causing me to feel like this!!But all the research I've done on cabergoline I'm finding out that others are going through the same thing! I'm so frustrated and don't know where else to turn! I can't keep missing work! Is this something that will eventually go away? I gained 12lbs in 3 days!! And I wasn't eating b/c I've been so nauseus! I keep having burning sensation in my chest(kind of heartburn). My endo ran more test yesterday on my pituitary and to check my prolactin levels since I've been on the medicine. Won't get the test results back until July 1st. I don't know if I can make it another 2 weeks of waiting! My PCP feels I should stop the cabergoline, but the neuro and endo both said no! F 28 4 weeks
.5mg 2X W
6/17/2010
Email
 3   none I have a question, I have been on this medication for about six months now. I have a relatively small tumor on my pituitory gland (9mm) and I think that I am just now starting to feel the effects of this medication. I now wnat to do things like excersise, watch what I eat, and I am now sleeping better. So my question is how long has it taken for most of you to feel this medication take effect. Thanks M 46 6 months
5 1X W
6/14/2010

 5  Macroprolactinoma Constipation (resolved by increasing fibre in diet), Energy levels reduce massively in the evening, morning after taking dose I feel a bit groggy Taking Dostinex after being diagnosed with a 25mm x 25mm macroprolactinoma 7 weeks ago. Prolactin level at diagnosis was 14,750 which reduced to 4,500 within 12 days on the lowest dose. It's since reduced to 450 at last test having been on 500Mg twice per week. Sight tests also improving so I hope that means the tumour is shrinking too. I have had some side effects - constipation and feeling groggy the day after taking dose. Also find my energy levels in the evening plummet - hardly surprising though if my body is fighting to get better and a small price to pay for the results it produces. On the plus side I'm feeling much better now than I've felt for a couple of years - libido returning too which is a massive bonus. M 33 6 weeks
500 2X W
5/22/2010
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 4  Pituitary tumor (benign) Early on-headaches, nausea, increased sex drive (difficult combo). Now, very sleepy, nausea. I was first put on Parlodel and stopped after 1 dose- made me violently ill- vomiting every 2 minutes. Several years later, went back on (with reduced dosage) and suffered through the side affects until became pregnant with my daughter. When wanted to have a 2nd child, was put on Dostinex. 50X better than parlodel. But now, 4 years later, having trouble with sleepiness (literally ready to fall asleep while exercising), nausea and low blood pressure. I'm interested to know from others with these side affects how they dealt. F 36 4 years
.5 mg 2X W
5/4/2010
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 4  Micro Adenoma Tiredness and no energy, very bad Bloating, Forgetful and bad memory, Always Hungry which resulted in weight gain and i am finding it very hard to loose weight, PMS very heavy and very painful - i have to get other drugs to help with this, very low sex drive, painful breasts, slight depression but not too bad. I have less heaches and my cycles have regulated which is great. My husband and i want to start trying for a baby and not sure how dostinex is during pregnancy. F 29 1 years
1X W
4/26/2010
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 4  micro adenoma impossible to lose weight instead gains quicker, always tired, headaches, migrains,constipation, dizzy,low bp, acne,hair loss,cannot take stress , endurance level very low while sports e.g, swimming, running, jogging, skipping etc.very late orgasms. i was diagnosed 4 years ago, and have been on dostinex since the past 3 years. Although i face quite a few side effects but my prolactin levels have gone down drastically, but when i stop taking it then it rises. F 24 2 years
0.5mg 4X W
4/23/2010

 4  microadenoma none. I have a 5.5mm microadenoma causing hyperprolactinemia. I have been without periods for 4 months. After 5 weeks on this drug, I have a period! I am not looking to make more children, but I am excited that this shows I probably have a more normal prolactin level now (it was originally 110). So probably also my tumor is shrinking which is the best of news, and all of this with a very small dosage and no noticeable side effects so far. F 44 5 weeks
.25mg 2X W
4/21/2010
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 3  High Prolactin (80) sudden and strong nausea, headaches (I am also taking Prometrium that also causes this), fatigue, weight gain, acne I have had high prolactin for 2 years, my first OB GYN never mentioned this was a problem!! My husband and I have been TTC for 13 months, and just found out my prolactin level of 80 was causing me not to ovulate and to have irregular cycles. My infertility docotr prescribed donstinex to help lower my levels. If the Dostinex gives me a baby...then all the side effects will be well worth it!!!If it works out in the end for me, I will have to update my rating :) So lets hope it does! If anyone has questions for me please feel free to e-mail! I definitely know it gets tough sometimes waiting for a BFP. F 21 3 weeks
.5 MG 2X W
4/6/2010
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 5  high prolactine level dizziness, nausea, decrease level of prolactine i've been using this dostinex for 2 mths (1 mth in 2008 and 1 mth in 2010), purposely for having baby. because of high level of prolactine, doc suggest me to take a pil a week(half on every 3/4 days). and it really helps me to conceive. i dont care of the side effect, as long as i can have baby. after i was confirmd prgnt, then i stop taking dostinex F 28 2 months
0.25 2X W
3/19/2010

 3  Microprolactinadenoma sleeplessness/insomnia, headaches with variying levels of strenght, agitation, increased libido, unable to concentrate for long periods of time, racing heart at times, dizziness, feeling physically week approx 24 hours after taking the medication, F 22 6 months
500MG 1X W
3/2/2010
Email
 3  pituitary microadenoma extremely tired all the time, nausea, headaches, increased libido, bad circulation, extreme moodswings, depression, night sweats, dizzy, light headed I took bromocriptine for about two months a few years ago, and had much worse side effects then I have with dostinex. My increased libido is driving me crazy because my boyfriend just can't keep up with me. I'm depressed and can't stop thinking about things. My mind is constantly going. I can hardly get out of bed some days because I'm so exhausted. It's becoming a problem with my job because I have to take off of work so much. F 27 2.5 weeks
2/1/2010
Email
 4  pituatary tumor I'm supposed to take .5 mg of the generic (Cabergoline) once per week. The first 24 hours after taking the pill I am exhausted. I used to cut the pill in half and take half a pill every 3 or 4 days. It helped. The real problem is the increased libido. I wish one of my doctors would've warned me about it. (I didn't know what was happening to me or why.) Stress makes it worse. In 2009 I stopped taking Dostinex for several months, until the symptoms of my tumor (including the headaches) returned. I just can't handle the raging libido when I'm completely stressed about my job. Now I'm taking half of the prescribed dosage each week. Based on the comments I've read here, I'm beginning to wonder if Dostinex can cause or reduce depression or anxiety. I have noticed my mood has improved since going back on on the generic of Dostinex. It's far better than Bromocriptine and it works. My 2008 MRI and labs & early 2009 labs were good. No need to increase my dosage of Dostinex, but no talk of decreasing it. F 37 9 years
1/31/2010
Email
 2  high prolactine due to tumor Headaches, so very tired, lack sex drive, mood swings, anger,constipation, dizzy, lack of interest, depressed F 27 4 weeks
1/30/2010
Email
 4  prolactinoma greatly increased libido, get very tired at some point in the day, don't handle stress as well, anxiety attacks at first the increased libido was welcomed but it has become a serious problem, too easily aroused and difficult to quit thinking about sex. The anxiety attacks come less often, probably from changing my life style at my doctors suggestion. I had to resign from a position that had too much stress that wouldn't have bothered me before dostinex. M 63 6 years
1/28/2010

 3  Prolactinoma Dizziness, Constipation and Bloated Stomach After missing my period for years, I was diagnosed MRI Scan with a 5mm Tumour. I have been on Dostinex now since 2002. I only started suffering severe and chronic constipation April 2007. Recently I have also started suffering very uncomfortable BLOATED Stomach. After researching Dostinex, I have found it depletes the digestive enzymes via the pancreas and liver to the stomach, hence this explains the constipation and Bloated stomach. Has anybody found a NATURAL way to HEAL this Tumour problem rather than taking a DRUG that has side affects. HELP'! F 51 7 years
1/26/2010
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 3  3800 prolactinoma 3mm tumors I have been taking half a tablet of Dostinex once a week for 4 months. The first week was hell! I felt extremely dizzy all the time, nausea, vomiting, tiredness, I was a wreck. However after a couple of weeks the feeling got better. After 2 months of taking it I got my first period/menstrual after 1 year. Now and then I feel really fatigued, nausea and irritable. I also get sharp cramp like head aches. Despite the side effects I am positive about this drug, its worth it! Sometimes you just have to try and use mind of matter and fight back. good luck to you all. does anyone know anything about falling pregnant with prolactonemia? We will start trying for children later on this year and i just wanted to know what to expect? F 24 4 months
1/9/2010
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 3  pituitary tumor severe nausea, dizziness, some stomach pains and lack of appetite and libido. weird dreams. possible increase in acne. Don't know if it's worked yet, but the side effects are less than on parlodel so i hope that it does. not unbearable, in any case, but awfully annoying sometimes. F 20 1 months
1/4/2010
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 1  elevated prolactin 35 no tumors PROFOUNDLY FATIGUE, FLU LIKE SYMPTOMS, CHILLS, HOTFLASHES, DIZZINESS, BLURRED VISION, HEADACHES, UPSET STOMACH, ACID REFLUX,LETHARGY,DECREASE APPETITE, FEEL LIKE I AM GOING TO DIE.BODY ACHES ALL OVER! FEEL LIKE I'VE LOST MYSELF. SHORTNESS OF BREATH, VERY SAD AND EXTREMELY HOPELESS! I HAVENT TAKEN THE MEDICATION LONG ENOUGH TO SUGGEST TO OTHERS WHETHER OR NOT THEY SHOULD TAKE IT! JUST WANT SOMEONE TO KNOW HOW I FEEL! MAYBE SOMEONE CAN EMAIL ME WITH SOME SUGGESTIONS ON HOW TO DEFEAT THESE EFFECTS! F 39
12/16/2009
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 5  Prolactinoma None I have noticed Prolactinoma was diagnosed in '05 & I began cabergoline 0.25 mg twice a week. This lowered my prolactin level & reduced size of the prolactinoma rapidly. I experienced increased libido & wish I had been diagnosed earlier as libido had declined without my knowing why. I (also my wife) have been pleased with the results of the medicine. M 61 4.5 years
12/10/2009

 4  prolactinoma Galactorrhea-leaky breasts, weight gain, decreased libido. Prolactin levels coming down, weight loss with exercise, no more bloating, increased libido. Only bad things are that I am always tired and my breast size has not yet decreased. Want them to shrink a little but not disappear. F 26 2 months
12/9/2009
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 4  prolactinoma always tired, sometimes feeling week. Prolactin levels coming down, weight loss with exercise, no more bloating, increased libido. Only bad things are that I am always tired and my breast size has not yet decreased. Want them to shrink a little but not disappear. F 26 2 months
12/9/2009
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 5  hyperprolactinemia, microadenoma slight dizziness I took dostinex after being diagnosed with a microadenoma and slightly high levels of prolactin (34). This level in itself was stopping me from ovulating, although I had anovulatory cycles with periods. I took this back in 2008 and got my periods a month later. I got pregnant during that first cycle and went on to have a healthy pregnancy - unfortunately it ended badly because our little girl had a genetic disease that we found out about at 36 weeks.... We are now ready to try again, but when I started taking dostinex immediately after childbirth, my levels did not come down as fast. 10 weeks after childbirth, my levels are at 31, I had hoped that the effect would have been the same as before the pregnancy and that the levels would be down around 20 by now if not lower. My endocrinologist is stumped. We have increased the dose from two half tablets a week to one and a half tablets a week to see if that works. Does anyone have any experience of dostinex reducing levels in the weeks following childbirth? My periods aren't back yet, but I am hoping that this increased dosage will start my cycles again like before. F 31 10 weeks
12/6/2009
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 3  Pituitary adenoma Lack of energy, headaches, nausea, hair loss on my head, hair growth on my face & back, short attention span, weight gain, insomnia, and my skin is dry. After taking bromocriptene & dostinex twice a week for 10 years and having my tumor shrink dramatically, I convinced my Dr to allow me to stop taking the drug to see if my condition would change. My hormone levels remain normal but I'm having bigger problems with low energy, Ive become "anti-social" and my attitude has really suffered, especially at work. This feeling is almost as bad as the side effects from the dostinex. Has anyone else quit taking the drug? How are you feeling? M 57 10 years
12/3/2009
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 5  macroadenom i think i dont have any seriosly side effects I am so happy that I found the Dostinex .I hope that mi life will go on. Before, i was very depresd F 28 4 years
11/26/2009
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 3  Prolactinoma Occasional headaches and stuffy nose. I notice if I miss a dose I start to feel kinda shakey. I don't know if this has anything to do with not taking the medication. I've been on Dostinex for about 6yrs. now. I think it has helped me somewhat, I still have the pituitary tumor but it has not grown at all and my breasts still leak a little but not nearly as much as before the Dostinex. F 42
11/26/2009

 3  Hyperprolactinenemia Very sleepy, tired, constipated What are your experiences in reducing gynocemastia with cabergoline? And weight loss/libido? M 21 7 days
11/19/2009

 4  Elevated Prolactin/ Microadenoma Sleepy all the time. I feel like my mind is cloudy/slow. I'm moody and I cry often. I basically feel like crap all the time. However, overall I feel better than prior to starting cabergoline. My microadenoma is 8mm and have been taking Cabergoline for 3 months. My prolactin level was 60 and after three months on cabergoline it's 72!! My level increased :( I'm going back for a repeat MRI to see if the tumor has grown. F 31 3 months
11/15/2009

 3  Hyper prolactinemia due to Empty Ce Enlarged painfull breasts, feeling angry often, lack of energy, tremendous weight gain, periods still not regular - it varies from 31 days to 17 day cycles. I'm still battling with severe pms. I still haven't fallen pregnant after using it for 10 months - 0.5mg twice a week. Dostinex restored my libido. I also experience less drastic periods ie from having 10 day heavy bleeds it has now come down to maximum 5 days and very manageable. F 40 10 months
10/28/2009

 4  macro prolactinoma tired, dizzy ,anger,edema , depression , the same as all the other people 4.3x3 tumor, prolactin 5400 at first in june 2009, now in October it is at 141 and the tumor is 4x2.3 I am tired a lot but am still working as a farmer/rancher, I guess life will go on. I hope the tumor shrinks more . No good insurance and this is getting very expensive. I pray for a time when I can feel good again. M 56 120 days
10/25/2009
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 5  Micro Prolactinoma Extremely high sex drive. I found myself constantly thinking of my wife and feeling a need to have sexual intercourse. It turned me into an animal basically, always thinking about her, always wanting her. I did have quite a few other side effects as well, nowhere near as beneficial as my sex drive. I would have instant angry feelings, about the most trivial of things. I would just be angry for no reason at all, the slightest thing would irritate me. I would also lose concentration so easily. I found I couldnt focus on anything for long, except obviously my wife and having sex with her. I do experience alot of fatigue, I find myself tired far more than I was before I started this drug. My stomach does have issues being upset more than it used to be as well. The drug is very effective as it has reduced the tumor and kept it from growing back. The side effects can be wonderful if you can identify them early on and learn how to handle them. That is kind of a reason I am here, I really wasn All and all, I would just say make sure both you and your spouse are well aware of the side effects so that you both understand what is going on and she can help you recognize the bad effects as they are happening, instead of thinking there is something seriously wrong with you, or worse, taking it personally. AS far as the sexual desires, I dont think there are many wives that would be against that from their spouse, especially far into their relationship when things have a tendency to slow down. My wife has two children, and I still find her the most beautiful and attractive woman on earth. I cant get enough of her! This drug could really mess things up if you arent aware of the side effects, if you arent in a strong relationship, I could see how cheating would be an issue, I definately see how the anger flashes are a problem, the lack of focus, the lack of concentration, the irritability, the sleeping patterns, insomnia, the stomach issues. As long as you know to deal with them, then this is a wonderful cure for these types of tumors. M 39 9 years
10/23/2009

 1  Macroprolactinoma Sexual addiction, sexual compulsion,loss of focus, loss of concentration, complete change in personality Where to begin? I have a 2cm x 2cm x 2cm Macroprolactinoma. Started out with Dostinex in 2005 and switched to generic in mid 2006. Noticed a change from the generic. Starting in 2005 I became addicted to internet porn. Now in 2009 I finally had a sexual affair and I don't feel in control of myself due to sexual compulsion and addiction. I have hit rock bottom because my partner of 17 years caught me in that affair. I want to quit cabergoline but the alternative [bromocryptine] is even worse. Does anyone know of an alternative to dostinex and bromo or something to take with the dostinex to control the sexual addiction? Please let me know by email. M 42 4 years
10/9/2009
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 4  high prolactin level The first day after I take Doxtinex it feels like I have the flu. I have to stay in bed because my head hurts so badly. I have a decreased sex drive, stuffy nose, occasional headaches, weight gain, constant constipation, and feel tired all of the time. I started with Parlodel and was able to become pregnant.The initial side effects were horrific. I took Dostinex throughout my second pregnacy and had a healthy baby girl. The only problem was that I could not breast feed because I didn't go off of the medicine soon enough. I have tried to go off of the Dostinex, but my prolactin levels always rise and then I have to start all over again. I do take birth control pills because they seem to keep everything regular. I take Seasonique because with them I only have a period four times year and the week I get my period there are pills with somehwhat of a hormone that doesn't just drop me cold turkey. When I take regular birth control pills I have horrific headaches during the week I'm off and having a period. I am tired all of the time and it is extremely difficult to lose any weight. I do have bouts of anger over nothing in particular and I'm glad to read that it is a symptom most of us share. It does pass, but at least now I can sum it up to having this problem rather than I'm losing my mind. I would reccommend to anyone who is trying to become pregnant that they find a reproductive endocronologist because they specialize in this area. I take .5 of a pill twice a week and my prolactin is now at a zero. After reading all of your comments I might try reducing my dose to see if my symptoms become less. I'm not sure I can cut that already small pill any smaller, but I will definitely try. Good luck to all of you and remember to a F 38 14 years
9/27/2009

 3  microprolactinoma plenty restless sleeplessnights,bloated stomach, I have recently been diagnosed with a microprolactinoma, i had not had a period since i had my daughter 5 years ago, before being diagnosd with this, i had really bad headaches, moodswings,aggression and just upset and going mad at the least little thing and really wasnt coping to well with my 5 kids as i always seemed to be angry! also no sex drive which resulted in a split with my partner although i dont blame him....now i have been taking cabergoline once a week for 3 weeks and have to do so for 3 years, i feel so much better already! i feel really happy and hyper the day after taking my med and just feel like i am changing back in to the person i used to be, still no sign of a period yet and still no sex drive what so ever, but i will keep you posted...good luck everyone F 35 3 weeks
9/25/2009

 4  MICRO PITUITARY PROLACTINOMA HYPO THYROID, 4MM TUMOR, LACK OF SLEEP, HEADACHE, CONFUSION AND SLOW CO-ORDINATION 24HRS WITHIN TAKING 0.25MG ON FRIDAYS. LESS SEX DRIVE, HORMONAL ISSUES, DEPRESSION. PRE & POST PND. WITH 2 KIDS. ANXIETY, IRRITATION TO NOISE LEVELS. I HAVE COMBATED MOST OF THESE ISSUES WITH ALSO WORKING WITH A NATROPATH AND MY DOCTOR. MY HUSBAND SAID THE BITCH HAS FINALLY LEFT THE HOUSE. NATROPATH BRAND OF METROGENICS FOR ALL THE SYSTEMS ABOVE AND CAREFULL HORMONAL CHARTING OF EVERYTHING FOR 3 MTHS HAS MADE OUR FAMILY LIVE GO FROM HELL ON WHEELS TO HAVING A WIFE/MUM THAT EVENONE EVEN ME LIKES. I WAS DIAGNOSIED AFTER 1ST CHILD AS MILK WOULD NOT DRY UP, 1 YEAR AFTER BREAST FEEDING STOPPED. I COULD HAVE BEEN A WET NURSE. ONLY ON A LOW DOSAGE AND IT WORKS FOR MY FAMILY. BEEN ON IT NOW FOR 5 YEARS. STILL STRUGGLE WITH WEIGHT ISSUES AND THYROID ISSUES. MY HUSBAND IS MY REMINDER TO TAKE IT EACH WEEK. AS WITHOUT IT. THE BITCH FROM HELL IS BACK. EVEN FAMILY AND FRIENDS NOTICED WHEN I STARTED WITH THIS TABLET, BUT COMBINING IT WITH HELP FROM A NATROPATH, & HEALTHY FOOD . IT HAS MY MADE LIFE AS ME THAT MORE PLEASANT. I LIKE ME FOR ME AND NOT THE DOUBLE LIFE I THINK MY BRIAN WAS LEADING ME. AS MY HORMONES CONTROLLED MY LIFE. NOW I DO. WOULD LOVE TO HEAR FROM OTHERS. F 42 5 years
9/21/2009
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 4  Macroadenoma Weight loss, upset stomach, loss of appetite... I also have suffered from a bleeding stomach ulcer which my Dr thinks is related to the upset stomach I have constantly suffered and increased stomach acid since taking Dostinex. I was diagnosed in January with a 4cm pituitary macro adenoma. I have been on Dostinex now for nearly 9 months. Just had latest MRI and it has shrunk to just over 1.6 cm. Still no return of periods but hormone levels seem to be more stable and I have lost about 10 kilos.... by pretty much not doing anything.... so every cloud... Hopefully by Christmas I should it should be down to a microadenoma and be measure by mm rather than cm!!! F 29 9 months
8/27/2009

 2  prolactinoma more sleepy than usual, irritability, dizzyness and confusion, shorter memory, severe bloating and tight stomach, mild constipation, restless legs at night, increased sensitivity both physically and emotionally (didnt want to be touched). Increased acne compounded by cystic Acne. Was diagnosed with 5mm pituitary tumor 9 months ago. Levels in November were 90. Went on dostinex @ .5mg 2x/week and experienced many side effects. By February prolactin levels were down to 50. But by april they were up to 65 and by august they were up to 75. By this time I had not been experienceing side effects quite as severe and for a short while, my sex drive even went up a bit but then went back down. I moved and got a new doctor who incresed my dosage to 1.5mg 2x/week because of the apparant resistance to the old dosage. Now I am experiencing side effects all over again. I really hate the way I feel on this drug and really hope that this new dosage will do the trick because I cant imagine going on a higher dosage. I am 30 and would like to have a baby but aparantly Im not even ovulating yet because my cycles are still not on track according to my doctor. The shortest has been 34 days but most of them are between 40 and 55 days long. Another thing... I have always had trouble with acne, but it got worse closer to when the hyperprolactinemia was diagnosed, then after I went on Dostinex, it got the worst it has ever been in my life... Im talking about cysts deep under my skin that you cant even squeeze to relieve the pain caused by the pressure. F 30 9 months
8/12/2009

 3  Thyroid disorder - pituitary gland sleepy. F 46 5 years
8/1/2009
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 5  Pituitary microadenoma Very few side effects, some fatigue at first, but compared to parlodel, its been amazing. Did someone say something about getting Dostinex in Korea? I'm living there now and having a hard time finding it and I've only got 4 weeks left of med. Once my prolactin levels had dropped, which they did, tremendously, I have been able to be maintained on an extremely low dose of Dostinex. I finally had to make the transition to cabergoline generic, which I am not as comfortable with, but couldn't find any more branded after the recall. My tumor is very small, not even a centimeter, but the effects of it were still very obvious to me, including the weight gain, hyper prolactin production, and breast cysts. All of these symptoms have been controlled with Dostinex and I am down to .25mg/week. I tried to come off of it all together, but my prolactin levels began to rise again. All in all, I love Dostinex and its changed my life for the better. F 26 3 years
6/24/2009
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 4  Pituitary Adenoma Shortly after an MRI scan my doctor found a benign pituitary brain tumor because I went in to complain that my breast were leaking in 2003 . Its been 6 years and I am happy to report that my tumor is gone and the side effects were mild but its caused other problems or at least I think its related to my condition. I am not 100% sure if this was because of the tumor or medicine (Dostinex) but for the last 3 to 4 years I have had irregular and very heavy and painful periods that last up to 2 weeks sometimes. My last doctor's visit stated that I was going through the early stages of menopause and have to get more tests done to confirm these new findings. Can anyone relate to this because I don't want my chances of having more children over and/or God forbid a hysterectomy. I also not allowed to stop taking Dostinex until they can determine what is wrong with me now. Again can anyone relate? F 33 6 years
6/24/2009
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 3  hyperprolactinemia Extremely tired all the time, hard to get up in the morning but difficulty falling alseep at night. About 1.5 days after I take the dose I feel like I took a percocet for no reason. Kind of a fuzzy feeling in my head. Headaches between my eyes often. The only thing is my brest do not hurt as much as they did before I started taking it. I am not sure what to do when I get pregnant. My breast were so full of milk (not secreting) prior to starting this med. When I stop taking it I can't even imagine how big the girls are going to get!!! F 34 7 months
6/23/2009

 5  Micro Prolactinoma I would get dizziness if I stood up to quickly especially out of the bath. Started taking dostinex in Sept 08 after a 4mm pitutary tumor was found. I never have had a regular period, usually about 3 or 4 a year. After starting dostinex i had 7 regular periods then fell pregnant first try when we started trying in May 09. I'm now 8 weeks pregnant! I stopped taking the dostinex when I was 4 weeks and will need to go back on it after the baby is born. F 30 7 months
6/15/2009

 5  Pituitary Gland Tumor I've always taken the medication (Cabergoline) at bed time. Too late and I wake up with a "hang over" feeling. Too early and I can't sleep. I take it right at 10:00 when I go to bed. Routine is essential. Initially... crazy dreams and insomnia. Today, NOTHING! It's as if I've taken noththing. I've been on it for about a year. Tumor has shrunk. Prior to medication, side effects of tumor were: High Blood Pressure, which my endocrinologist refused to believe was related; proved him wrong, High Prolactin levels caused me to lactate! blood sugar levels were erratic. I was miserable. Today, I'm back to my old self. Textbook periods, 28 days to the minute!!! My only concern that I've read is that it causes heart valve damage when taken for Parkinsons. Any truth to my condition??? F 45 1 years
5/25/2009
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 4  microprolactinoma Side effects..hmmm. I have been on this medication for almost 14 years and I haven't really experienced many side effects. Headaches. My symptoms from the tumor decreased so its a blessing! When I was first diagnosed I was 14 years old. I was first put on Parlodel and it was HORRIBLE! Finally, I seen an endocronologist who gave me Dostinex. In the beginning it was so expensive and it had went down some when the generic version Cabergoline came out. But I have to make sure I always have insurance because I can not afford the meds without it. When I started taking this I had never had a period and it took till I was 21 to finally have one. I was told I would never have children and at 22 I got pregnant. Yay!! This medication has done wonders for me. If your doctor tells you that you can't have children because of this, I say challenge them. Stay on top of your prolactin levels and MAKE the doctors increase your dosage until YOU feel right. We know our bodies, NOT the doctors. You pay them to make you better and stay on top of them until they do. Feel free to email me. I have been through it all with this medication. Good luck and God Bless to all of the women out there struggling to have children because of this disease!! F 27 13 years
5/15/2009
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 2  Elevated levels of Prolactin Major aggression and anger, constant anxiety over every little thing, insomnia, constipation I switched to Dostinex after suffering major physical side effects with Parlodel i.e. falling asleep on my desk, stuffy nose etc. Given the 2 options, I'll take the physical side effects over the crazy lady any day! F 32 6 weeks
5/14/2009

 2  Macroadenoma Weight loss, stomach upset, occasional dizzy spells Just had 3rd MRI that confirms it has not shrunk and is non secreting so been put forward for surgery as now 2mm from optic nerve. Has anyone had this? Keen to find out more from people who have been through it. If so please email me. Thanks F 28 3 months
5/12/2009
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 3  Prolactanoma tumor My 16 yr old daughter has very bad headaches and misses a lot school but keeps her grades up. She has anxiety, tired, dizzy, depressed, blah feeling, upset stomach. The headaches last for days after taking it and she only takes 1 pill a week and at night. Tumor did shrink to 3mm from 6mm. She is very young and skinny. I think it depresses her to have to take the medicine and complains about it. I feel sorry for her and she will probably be taking it for many years to come. We are switching to a new endocronolgist for a second opion. F 16 1 years
4/28/2009

 3  high prolactin real bad headaches, no energy, producing milk, weigh gain. depressed. I started the medicine back in September. My prolactin level was 240. It is now down to a 4.I feel it work for a little bit . I am back to being tired alot, i feel like i am forgetting also Know i am having tingling on the right side of my chest . Ihad a echo done in Decembember and a cat scan all came back normal. I am not sure if this is a side effect. Has anyone else had this proublem? F 33 8 months
4/27/2009
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 4  infertility/high prolactin Extreme energy-can function on much less sleep. Extremely efficient at work-my mental clarity is better than it has ever been. Higher sex drive. Increased thirst. Hyperactive-difficult to calm my mind. It has restored my period to normal in just 3 months. I have been trying to conceive for 3 years and had short luteal phase due to elevated prolactin (my levels were 33 and they are now 7). F 36 3 months
4/20/2009

 3  prolactinoma Hi friend, I’ve taking gabergoline since 2003. At first, I thought I was in heaven…the best sex ever and immense energy. But little by little the bad side effects sneaked in and started being hypersexual. I then developed paranoia. I thought helicopters were following me. At first I lost a ton of weight and then I became very strong. There are some very weird, unexplainable side effects, an anomaly. I make other people excited by my mere presence or when I look at people. One of the girls I dated said that it looked like sexuality would come out of my pores. It’s like pheromones or something like that.I have no idea what the heck is going on. Do you know why the original manufacturer stopped making the drug? It almost like this drug amplifies your thoughts or so powerful that it projects your thoughts. Has anyone had what they consider a successful Gamma knife or Cyber knife surgery. M 44 4 years
4/15/2009
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 3  Prolactinoma Daily headaches (usually right between the eyes), blurred vision, dizziness, nausea, chest pains - started a couple weeks ago(I'm assuming it's anxiety), confusion (I feel like I'm getting dumb!), constipation, feeling "puffy" even though I'm losing weight, loss of interest in most things...overall Blah. It seems to be working, but is it worth it? These side-effects are terrible. I'm a little jealous that I didn't get the "increased libido" side-effect..at least I'd be enjoying something about this drug. (my husband too!). F 32 4 months
4/2/2009

 5  ELEVATED PROLACTIN OKAY EVERYONE NEEDS TO READ THIS!!!!!!!!!!!!!!!!!!!!!! I HAVE BEEN ON THIS DRUG PROBABLY LONGER THAN ANYONE IN THE U.S. BECAUSE WHEN I STARTED TAKING IT, THEY USED TO HAVE TO SHIP IT FROM THE U.K. FOR ME. I HAVE HAD ALL OF THE SYMPTOMS FROM THE DIZZINESS, FLU LIKE SYMPTOMS, SLEEPY, LACK OF ENERGY, NO MENSTRUAL CYCLE FOR YEARS,TOOK IT WHILE PREGNANT (EVEN WHEN I WAS TOLD I COULDN'T GET PREGNANT SINCE I HADN'T HAD A CYCLE IN OVER 3 YEARS--YET STILL OVULATED) ETC, ETC. YOU NAME IT, I'VE MORE THAN LIKELY EXPERIENCED IT. I'VE BEEN GOIN TO THE DOCS EVERY 90 FOR THE LAST 16+ YEARS, AND HAVE HAD MULTIPLE MRI SCANS (I SWEAR I PROBABLY GLOW IN THE DARK NOW) WITH ALL OF THIS I DON'T SUGGEST ANYONE GOING TO PARLODEL, I ALWAYS TELL EVERYONE TO KEEP UP WITH THE LAB WORK, AND DON'T SETTLE WITH THEM NOT CALLING YOU. KEEP UP WITH GETTING THE RESULTS. KEEP TRACK OF IT, YOU'LL ALWAYS HAVE IT JUST NOT ALWAYS AS HIGH AT TIMES AS OTHER TIMES. YOU ALSO MIGHT HAVE OTHER PROBLEMS ALONG THE WAY, LIKE THYROID N I COULD GO ON IN A BOOK TO TELL YOU ALL ABOUT WHAT I'VE GONE THRU WITH THE DRUG, AND EACH OF YOU IS DIFFERENT. I FIRST LEARNED I HAD ELEV. PROLACTIN AT AGE 23 AND I AM NOW GOING ON 39 (MAN TIME FLIES WHEN YOU'RE HAVIN FUN-LOL) PLEASE EMAIL ME--I KNOW I CAN HELP! IF YOU'RE EXPERIENCING IT, I'M SURE I CAN HELP WALK YOU THREW IT--I'VE DONE THE COUNSELING MYSELF--I'M A GREAT LISTENER--AND REALLY THE BEST WAY TO GET BETTER IS TO REALIZE YOU ARE NOT THE ONLY ONE OUT THERE GOINNG THRU IT!! NOW THERE IS MANY OF US--AND WHEN I GOT MY SCRIPT REFILLED TONIGHT THEY ACTUALLY HAD IT AVAILABLE--WHICH IN A NEW TOWN WAS FREAKISHLY RARE--NEVER HAD IT FILLED RIGHT AWAY IN ALL MY YEARS OF TAKING IT!! WE ARE ALL HERE TO HELP EACH OTHER--WE CAN ALL GET THRU IT TOGETHER! F 38 16 years
3/26/2009
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 3  microadenoma runny nose the day I take the pill. Two weeks before my period I get a few days of real "fun" tension headaches (not migraines), which are so severe that I just want to die. Ibuprofen helps on almost OD levels. Other side effects include very "blah" mood, spacing out, and no libido whatsoever. To all of you who got their libido back - Congrats, treasure it. I currently take 2.5 pills a week - 1 on Tuesday and 1.5 on Friday). I lowered the dosage before for some 5 months, and the proluctin level incresed, so I am back to 2 - 2.5 pills a week. F 38 5 years
3/13/2009

 4  macroadenoma Upset stomach, weight loss I was diagnosed 4 weeks ago with a Macroadenoma and my prolactin level was 2900, just had a blood test 3 weeks in and no change in prolactin level. Have another MRI scan in 2 weeks and another blood test. Fingers crossed there will be a reduction! F 28 4 weeks
2/24/2009
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 3  Pituitory Adenoma really uncomfortably tired, sadness, some headaches, lack of sleep, short attention span, heavy period with cramping. I took bromocriptine while I was pregnant, and then stopped all medication to breast feed my girls and my tumour bleed. I had massive headaches which were then controlled when I went back onto dostinex. F 36 7 years
2/24/2009

 4  Microprolactinoma Occasionally tired, mild headaches. I know Dostinex is not recommended during pregnancy, but has anybody out there given birth to a healthy baby while taking Dostinex during first trimester or longer into pregnancy?? Thanks for any feedback. F
2/5/2009

 4  Prolactinoma First 18 mths only dizziness within 24hrs of taking. Now 24 mths on, I can attribute anger, mild depression, weight gain, crying about nothing. I was diagnosed before having my 2nd child and was pregnant within 3 mths of starting dostinex. Continued straight after birth taking it so couldn't breast feed. Thought it was a miracle drug until very recently when I started researching my current symptons and thought they might be linked to dostinex. I have stopped taking it, see my specialist in 1 mth (he is on leave!), so I will be able to report to him then if things have improved. I don't know what the alternatives are... F 38 3 years
2/3/2009

 3  micro prolactinoma fatigue, anger, agression, constipation, feeling like I want to cry all of the time I have been taking 1 pill 2x's a week and I am noticing very vivid dreams and extreme moodiness. I am very angy and feel aggresive and anxious. I do not feel like myself but I am going to see if my levels come down within the next 2 months F 33 28 days
2/1/2009

 5  Hyperprolactinoma, MicroAdenoma My hyperprolactinoma (or pituitary microadenoma) was diagnosed almost 13 years ago. After using Parlodel for many years, my doctor switched me to Dostinex which I have now used for about 8 years. It works great for me now. When I FIRST started using it, before the appropriate level was determined, I experienced drowsiness, dizziness, decreased attention span, and forgetfulness. When I couldn't remember my supervisor's name, I knew there was something wrong, so I called my doctor. He backed off my medication and told me to take it at night, and now I don't have these problems anymore. I take 2 tabs 2x a week, on Saturdays and Tuesdays BEFORE GOING TO BED (when I likely have food in my stomach). If I forget to take my pill on Saturday, and take my pill on Sunday, then on schedule for Tuesday, I DO experience some forgetfulness and sometimes an inability to pay attention. So needless to say, it is important to take your pills on schedule. Its powerful stuff. My adv F 46 8 years
1/28/2009

 3  Pituitary Addenoma Tired,Nauseas, lightheaded, Dizzy, Lights flashing when my eyes are closed, Pain in legs, jaw, arms, numbness,weight loss, Constant sick feeling that wont go away!! I just started taking Dostinex 3 weeks ago and the side affects are kicking in. Sex drive comes and goes. Weight loss 10lbs in two weeks, but I have been eating healthier. I just feel sick all the time, especially when I wake up in the mornings. Lack of energy and I cant have this I am planning my wedding!! F 23 3 weeks
1/23/2009
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 5  Hyperprolactinoma When i first started on dostinex it was after i had a migraine and my tumor hemmoraged. The tumor was 3.5cm high by 2.5 wide. My prolactin levels were at 30,000 points!!! but after taking dostinex they went down to only 75!! My neuro surgon was amazed at the results after 3 months. I lost 20kg in total, but i was also eating MUCH healthier and also running 3.5km every day (im from australia no miles here, hehe) But!! i do feel cloudy minded (almost like ive had a joint) after taking dostinex.. I take 1 tab 2x per week. Just wondering if anyone else feels like this afterwards... its annoying when trying to make conversation or paying attention to things. M 28 2 years
1/10/2009
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 5  micro prolactinoma dizziness, double vision, fatigue, sleepy all the time well I am taking dostinex since 2 years and a half 2 per week 0.5 mg my prolactine dropped from 196 to 13.5 range of (0-19.5) my tumor shrinked from 10 mm to 6 mm but the problem that I am facing is that I am sleepy 24 hours, I feel sleepy anytime and everywhere... and now new symptoms of DOUBLE VISION,,, anybody with the same problem contact me and give me recommendation please F 20 2.5 years
12/11/2008
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 3  Prolactinoma Headaches, Mood Swings, Very tired when i take the med, worse periods now with bad cramps. The med just sometimes seem to wear me out. I've been on the med for 13 months now and the tumor is shrinking very little. It was 10mm and now it is 8.4mm after 13 months on the awful medicine. I am just wondering if it would be better to have surgery and hopefully not have to depend on the meds? Anybody have any suggestions? F 28 13 months
12/8/2008

 4  microadenoma decreased blood pressure, low sex drive, hair loss, weight gain, insomnia, I took Parlodel for 2-4 years (got pregnant and stopped for a while). Parlodel was horrible. I was exhausted to the point of being unable to function and gained weight. Then I was put on Dostinex and have been on it for over 10 years. My prolactin has not gone below 70 - so it is still 'high'. But I was able to get pregnant (and stopped Dostinex while pregnant and nursing). Now I have entered menopause and continue the Dostinex. I would love to blame being overweight on Dostinex, but don't know if that is accurate. I do have aches and pains but don't know what is normal as I have been on Dostinex for so long. I think that the generic, which I have taken for many years, is not as effective as the name brand. I believe that my prolactin level was normal when I had the name brand, but remains steady, but high, on the generic. My tumor has remained at 9mm since I was first diagnosed and I do not plan to have surgery. I have yearly MRI's. I have been thru 4 endocrinologists and have F 51 15 years
12/2/2008

 3  pituitary micro adenoma where do i begin... well lots of muscle pain, headaches, extreme cramps when i get my period, lack of energy, dry mouth, hypotension, i feel very sleepy somedays. I have my good days and bad days but i rather get better even when sometimes i think the medicine is worst than the disease!!! F 21 8 months
12/1/2008

 4  pituitary microadenoma breast pain, acute back pain during the ovulation days. My microprolactinoma remains in the same small size, my periods are regular again and my prolactin level dropped from 600 to 20. F 49 2 years
11/25/2008

 3  Pituitary adenoma I have constant headaches (which vary in intensity from mild to almost migrane-like), nausea, lack of energy, difficulty concentrating, difficulty sleeping, an extremly short attention span, hair loss, problems with short-term memory, increased appetite, sinus problems, & increased thirst. I've become moody but remain fairly good-natured. My sex drive is back to normal, which is great! However, I am experiencing a total lack of interest in my job. I don't care if I complete tasks or do a good job. This issue is really causing me some grief as I am constantly scrambeling to keep my head above water. These problems all began 10 years ago when I was diagnosed with the pituitary tumor and prescribed dostinex. When switched to the generic version, cabergoline, the problems got worse. I take .5 mg twice a week. M 56 8 years
11/24/2008

 4  microprolactinoma I think harder to lose weight, some tiredness, some irritability, my anti-depressant not working as well. But otherwise, it's ok. Look, no one wants to be on medicine, at all. Medicine is not natural or great. But to correct a condition you do what you need to do. My dr. said I only need to be on this .5 twice a week dosage for a few more mos and then we'll cut down. So I will stick it out. Everything has side-effects, you deal as much as you can. F 35 2 months
11/19/2008

 3  Micro Pituitary Adenoma Headaches, sinus congestion, teeth sensitivity, light headed, hard to concentrate, mood swings very irritable, fatigue, light flashing in the dark, insomnia. My prolactin level is under control, the tumor is shrunk all this as long I'm on Dostinex, I stop the pill once in a while to rest from it until the symptoms return, I have been thinking "seriously" in having this tumor removed,I don't want to depend on this medication, so I can have a normal live, without all the other symptoms from high prolactin levels and a tumor on my pituitary..... can anybody give me their thoughts about this. F 40 10 years
11/13/2008
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 1  hyperprolactinemia extreme fatigue, mood swings, depression I started taking this med 0.5 mg tabs (1/2 tab twice a week) for elevated prolactin levels (had MRI and no pituitary adenoma). I became a different person on this. I became extremely fatigued (went from working out 5-6 days a week to none at all), major mood swings and aggression, just the every day task of living became unbearably hard-not a good thing when you have a husband and two young children (age 4yr and 1 yr) to take care of. It took me 4 long weeks to figure out it was the medicine that was making me feel so bad and I immediately stopped. I would rather have leaky breasts for the rest of my life rather than take this medication. F 36 4 weeks
11/7/2008

 4  hyperprolactemia slight dizzines I have been taking cabergoline for about nine months... my period returned in a few days after taking it. my sex drive came back as well.... but I have lost it again... i don't know why... i take .25mg per week.. do i need a higher dose... to keep my sex drive? M 35 9 months
11/6/2008

 4  Micro prolactinoma Same as before, sometimes dizzy when standing up too quickly. I got my blood test results today and my prolactin has dropped into the normal range! Its 370 (range 85 - 500). I will continue on the 0.5mg per week and see if my cycle becomes normal. Had a period after week 3 on Dostinex. F 29 4 weeks
10/30/2008

 2  Dystonia & restless legs Severe constipation -No bowel movement 4 days. I took large quantities of Lactulose solution to get a bowel movement again This helped with my restless legs but Not my dystonia.No sexual effect.was taking 0.5 size tablet every 3 days M 47 2 weeks
10/29/2008

 4  Micro prolactinoma Sometimes I feel a little dizzy when I stand up to get out of the bath. It subsides within about 20 secs. I rarely drink alcohol, but if I do it affects me more quickly than usual. I drank half a glass of wine within an hour of taking Dostinex and I was so sleepy I had to go to bed. I was worried teh side effects would be worse. I have just had my first period on Dostinex. I'm only taking 0.5 x 1 week, but I am seeing the specialsit next week after my blood tests to check prolactin levels. I have not had a period for 4 months and 6 months before that. I'm hoping Dostinex will make me regular. F 29 1 months
10/24/2008

 3  piturtary tumor dizziness, stuttering, hallucinations, double vision, blurred vision, floating feeling, aggression, saddness, forgetfulness, difficulty concentrating, severe headaches, vivid nightmares lack of sexual desire,moody,thirsty,fatique blurred vision,headache, can't stand certain noises and smells.vomiting missed cycles help with the fatique and headaces and vomiting F 40 4 years
10/24/2008
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 3  Macro Prolactinoma Fatigue, dizziness when standing up too fast due to lowered blood pressure. Side effects went after few weeks although always returned when i increased dosage. Now on quite high dose (1mg per day) and not noticing too many ill effects. Obviously worried about heart valves on this dose but cant live without libido any longer :( so will take the risk! Drug has been somewhat successful. It has lowered PRL down from 9000 mul (450 US measurement) to 3500 mul (175 US) in 11 months. Libido not returned yet but then PRL is far from normal. I seem to be taking forever to normalise PRL. I am hoping it will be normal in a few more months. I am hoping libido returns like it has with most others here :) M 29 1 years
10/14/2008
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 4  microprolactinoma tiredness, stomach sensitivity I think it helps. I got my period within a few weeks. I am looking forward to shrinking the adenoma and normalizing my prolactin levels and will listen to my doctor and proceed accordingly. The side effects aren't bad at all. F 35 1 months
10/11/2008

 3  Hyperprolactinemia Have been suffering from Crazy mood swings,lack of attention, memory problems, inability to lose weight (and I'm TRYING!), increase in breast size, upper stomach pain, feeling weak. I was diagnosed with hyperprolactinemia (um, spelling??) when I was 23 or so. After rounds of tests and MRI showed I had a minitumor. Went on Bromocriptine first for almost 5 years. When I stopped taking it (just thought I was normal again I guess), I had all my symptoms back in 6 weeks. ( NO periods, milking breats, you get the picture). And Endo told me Bromo was from the Dark Ages and suggested Dostinex. Well. Yes Dostinex works for what it is intended, but I often feel like a crazy person and have outrageous mood swings and feel very aggressive. I am usually peaceful. I have been told pregnancy can "cure" this condition. I am sorry most of you are suffering, but in a way I'm glad because I don't feel so alone like no one understands. Like it's just some "hormone probem". AAHGGHHH. F 32 2 years
10/2/2008
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 4  Increased Prolactin / Prolactinoma No side effects from taking Cabergoline for three months except increased sex drive! 4mm Micro-Prolactinoma diagnosed through Cat Scan. .5 mg. One pill twice a week. On rare occasion I have stuttered. I repeat questions sometimes, experience forgetfulness and lose focus, but I don't know if it's from the medicine or the condition as I think I experienced those just before I began the medicine. I will ask the doctor on my next visit which is next week to see if Prolactin level has reduced. Has anyone ever heard of someone being able to get rid of the tumor completely with the medicine and never have to take the medicine again? F 36 3 months
8/25/2008
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 5  Pituitary macroadenoma In the beginning, I had palpitations for a few days when my dose was increased from once a week to twice a week. I also had hallucinations when I closed my eyes to go to bed, but that was likely due to optic nerve compression. Other than that, I have been on it for 7 years with no ill effects whatsoever. The Dostinex shrank my tumor enough (prolactin levels of 6600 to start, 11 currently) to surgically remove, and has kept the tumor from coming back since the surgery in 2002. I am so glad that this came along...I heard horror stories about bromocriptine! M 42 7 years
8/23/2008
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 5  pituitary prolactinoma No side effects other than continuing gerd. GERD started with use of parlodel that I had to take prior to Dostinex being available in Canada. This drug gave me my life back! Breast size reduced, lost 20 lbs in 4 months, erections came back strong, libido came back wonderfully. As close to a miracle drug as I've found! Take half a pill twice a week since 2000. M 43 8 years
8/16/2008

 3  Pituitary Ademona Lack of appetite mostly, i could go 24 hours without eating. I took this medication for prolactin levels measuring 6900 (i had not started my period at the age of 19). It dropped to 100 in 5 months, at that point i stopped taking it and got my first period 3 months later and then another 2 months later each lasting for 3 days. I went for tests again 5 months after i stopped the drug and the prolactin had risen to 250 again. I went for more tests last week and i have a fear it has increased again. I would like to find out from readers if the tumor came back after taking this medication and if you considered the surgery and i would like to find out what side effects you had after taking the drug. I am currently suffering from constipation, vertigo, abdominal pain, lack of appetite and still no period, i am battling to lose weight and my skin is looking terrible (i drink two litres of water a day!). Please email me i would love to hear from anyone at this stage. F 19 5 months
8/4/2008
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 3  High Prolactine Headache,vomitting,lips pain,tongue pain,jaw pain, can't pronounce correctly,dizziness,a lot of wind in the stomach,loose weight. My prolactine level has dropped from 200 to 60 but the side effects are unbearable.Sometimes I cried at night. F 30 2 months
8/4/2008

 5  micro prolactinoma I've been taking Dostinex for 2 years. It helped decrease my prolactine. Mentsrual cycles became regular. My sex drive increased dramatically- not it's very high and before I hardly ever wanted sex. Overall, I'm in a much better mood than before. I'm very happy with Dostinex! F 29 2 years
7/28/2008
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 3  i have a microprolactinoma I have been experimenting nausea dizzines tirednes and at times i cry for no reason ,and i also cant sleep. F 30 2 months
7/23/2008

 4  microprolactinoma I was taking the brand for 3 years and I was fine. Had some insomnia and mood swings at first but they went away. But now I'm having problems with the generic.. Migraines almost every week. How do you order a different generic? Just ask the pharmacist to order something different or you guys buy medication through the Internet. And which generic works better for you? Any info would be appreciated. Thank you. F 30 5 years
7/21/2008
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 5  Prolactinoma I was a bit tired in the beginning of the treatment, but only for a few weeks. I have been a little bit nauseous - nothing too serious. Loss of appetite. Not really a problem in my case as I needed to loose some weight It has changed my life! I lost 12kg in 2months. I am more happy and positive than ever before. HUGE improvement in libido and confidence M 29 60 days
7/20/2008
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 5  hyperprolactinemia headaches close to the day I'm suppose to take it,extremely tired When I use the generic pill, the symptoms are much worse including migraines,pain in my bones ( one arm,one leg, one feet, intermitent), joints inflammation, sometimes nausea, lack of concentration. I had brain surgery to remove a meningioma in 1993. In 2003 the tumor grew again and I had 28 brain radiaton treatments.In 2005 I was diagnosed with hyperprolatinemia and began treatment with Dostinex. I definitely have experienced different side effects with brand name Dostinex than with the generic Cabergoline. F 50 2 years
7/13/2008
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 3  because of my hormones constipation,moody,tired,think im going insane,sick,insomia i lost my baby last year through premeture labour and was in deep depression when a couple of months later my periods still hadnt returned i went to the doctor and they sent me to a mri scan i have a 3mm tumour and my levels were 3000 started taking caberloinge and there down 144 i still feel moody all the time anyone else feel the same and can we have children. F 23 7 months
7/8/2008
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 5  macro- prolactinoma I am just starting dotinex, .5mg 2 times a week, so far the side effects are few and far between but when they are here it is intense (nausea, vomiting, constipation, thinning of hair, and dizzyness) Its tough but right now, i'd rather the tumor shrink. F 26 14 days
6/18/2008

 4  hyperprolactinemia Lower blood pressure, "spaced out" a bit the day ater I take it (at night) I tried Parlodel and Permax. They were terrible. I was started on Dostinex over 10 years ago, and I refuse to ever go back on the others. My diagnosis is unclear; I had very high prolactin, but it was dubious whether there was actually a tumor on MRI. When I started on dopa agonists, I noticed that I slept SO well for the first 6 months or so, then could not sleep at all. (Thank God for Ambien and Sonata!) I am currently weaning down to only 1/4 of a 0.5 mg tab twice weekly; continue to have R breast discharge, but apparently have to live with it. The cost is insane in the US, and without insurance, I have to do the best I can. Personally, my emotions have been MUCH more manageable on cabergoline. My life was much worse without it. If I am not consistent with my dosing, I will get symptoms of menopause and mood swings. F 40 12 years
6/1/2008

 5  Prolactinoma I had no appetite, very tired,could barely function. Sucked all the fat from just under my skin. Have been off Dostinex for 1yr. but side effects never left completely. Went directly into having Hypothyroid. (wonder if Dostinex damaged thyroid or something else) My skin and hair is now very dry and my skin is very heat sensitive!!! I feel very lucky my tumor is gone but I would like to see if anyone else has had similar problems. F 50 9 months
5/26/2008
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 4  Prolactinoma At first my erections were wonderful, as if I was 20 years old again. But after taking it for 2 years my erections declined. Now that I'm off it and my prolactin level is still down, my erections are good. Generic drugs are not all the same! When I switched from the brand name version to a generic I had a terrible response. I had to try three generics before I found one that worked as well as the original. Generics are the same drug but the other things that are added to the pill vary from manufacturer to manufacturer. Anyone who uses generic dostinex should know this! M 57 2 years
5/25/2008

 4  Pituitary Tumor - Increased Prolact No period for 6 months, a little moody, VERY sleepy, yawn way too much, hot and cold at the same time, a small amount of breast discharge, painful breasts, vision problems, achey joints, some anxiety, very forgetful, headaches, no energy and just completely drained! Dostinex (cabergoline) has been useful so far. I have been on it for almost 2 months and my prolactin level has gone down about 10 points. It does cause severe laziness and I get pretty sleepy on days that I take it. But it gets slightly better the day after, until I have to take it again. I only take half a pill two times a week. I am a little worried about having to take it for the rest of my life, off and on. But if it means my health or being alert and unhealthy, I'll take it! Please do NOT continue dosage while being pregnant.... big problem! My headaches are still there often, but not as bad as before taking the medication. Although I am starting to feel pressure at the bottom of my throat, like someone has their hands around it - but no problems breathing or swallowing. Just quite annoying and my doctor believes it is a side effect from the medication. F 23 50 days
4/18/2008
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 2  Pituitary Tumor dizziness, stuttering, hallucinations, double vision, blurred vision, floating feeling, aggression, saddness, forgetfulness, difficulty concentrating, severe headaches, vivid nightmares Dostinex has shrunken the tumor but the side effects are so horrible. Don't know what else to do. M 36
4/9/2008
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 4  Prolacionoma Bad headaches the day after I take the medication. Hard time sleeping, awake 5-6 times a night. Vary painful breasts. Prolactin has decreased but the side effects are not fun. F 28 6 months
4/3/2008

 5  hyperprolactinaemia For the first few weeks felt drowsy and kind of hung over after taking medication but that has decreased with time. I take 1/2 a tablet twice a week, I sometimes feel a bit sluggish still the morning after I've taken it but the effect wears off by midday. After the birth of my daughter when I was 34 I was never able to breastfeed as I developed acute mastitis but was still lactating 18 months later. I had constant leaking, extremely painful breasts as well as other problems that both a breast specialist and a supposed "top" endocrinologist pretty much dismissed as "hormonal problems" post-pregnancy. My elevated prolactin level was discovered but seemed to be disregarded as it was just under 1000 so they kept sending me for blood tests every 6 months to "keep an eye on it". It was only after I saw a new GP last year that I was referred to a different endo who could not believe I'd lived with constant breast pain, low libido and mild depression for so many years without being given any help. Since I've been on the Dostinex my body and my life have returned to how they used to be before I had my daughter, who is nearly 6. Sometimes you have to persevere, you know your own body and you know when it's not wor F 39 7 months
3/27/2008
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Average rating for drug: 3.7. This page is printer-friendly; use landscape print with background color turned on.
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