Aa
Taking Cabergoline for high prolation levels
I just wondered does anyone else take Dostinex for high prolactin levels. I have been taking it for two years and it worked well but the down side is that my mental health has got a lot worse, depression, mood swings, anxiety, panic attacks and sucidal thoughts. I wondered does anyone else get this with this medication, my doctor says its not the medication as i had mental health problems before i started them but i feel they have made me worse, am i wrong and just looking for something to blame buti just wanted to know if anyone else ever experienced this on this medication.
I know this thread gets new posts every 2-3 years, but it looks like every posts helps.
Like most here, I've been having suicidal thoughts, more so, and more graphically, since taking Dostinex.
More thoughts in my reply to Frank Hh above ^
Like most here, I've been having suicidal thoughts, more so, and more graphically, since taking Dostinex.
More thoughts in my reply to Frank Hh above ^
I have been taking cabergoline for just over three years. I was diagnosed at 29, after my sex drive was non existent. At first, it was my miracle drug. I had sex with my wife 2-3 times a day, after hardly having interest for a year or two. While she was pregnant, I was relieved bc I didn't have to be ashamed for not wanting sex (tho she still did). Within six months of taking this medication, I lost my mind. I lost my marriage, my son, and my finances. I was a great person, people loved me. I got to the point where people avoided me bc they thought I was an *******. I contemplated suicide. Something that has never in my life crossed my mind. One day I found a similar threat and saw an outpouring of similar stories, I remember I just broke down. I sobbed like a baby, bc I simply couldn't understand how I suddenly lost control and could hurt so many people. Even reading some of these posts make my eyes water. I'm not a sensitive guy, but my life was literally destroyed. My entire family suffered. I'm now taking a quarter the dose I began with, and my sides have subsided. I wish I knew more going in.
2 Comments
I know this thread gets new posts every 2-3 years, but it looks like every posts helps.
Like most here, I've been having suicidal thoughts, more so, and more graphically, since taking Dostinex. I started the treatment one year ago, and the first three months were just horrible. Wanting to cut my arms off with a miter saw for example. Crying buckets for no reason. Yes, it increased my sex drive. Yes it gave me tons of energy, and i felt more focused creatively the first while. But was it worth the depression? NO.
I've already felt depressed, my whole life, and suicide crossed my mind more than once. But since taking dostinex i went way into a dark space. The endo cut my dosage in half recently, but I'm a still a mess.
And like most here, my endo and GP are pretty clueless about the bad side effects. They both had to consult their medical books for the side effects, and their books didn't mention suicide. I showed them them the leaflet that comes inside of the dostinex box (i'm in France, BTW) which explicitly states "suicide, depression, ADD, OCD, compulsive spending, gambling" as side effects. They were both surprised, and evenn STILL suggested that my increased depression was due to other things than the dostinex.
Like most here, I've been having suicidal thoughts, more so, and more graphically, since taking Dostinex. I started the treatment one year ago, and the first three months were just horrible. Wanting to cut my arms off with a miter saw for example. Crying buckets for no reason. Yes, it increased my sex drive. Yes it gave me tons of energy, and i felt more focused creatively the first while. But was it worth the depression? NO.
I've already felt depressed, my whole life, and suicide crossed my mind more than once. But since taking dostinex i went way into a dark space. The endo cut my dosage in half recently, but I'm a still a mess.
And like most here, my endo and GP are pretty clueless about the bad side effects. They both had to consult their medical books for the side effects, and their books didn't mention suicide. I showed them them the leaflet that comes inside of the dostinex box (i'm in France, BTW) which explicitly states "suicide, depression, ADD, OCD, compulsive spending, gambling" as side effects. They were both surprised, and evenn STILL suggested that my increased depression was due to other things than the dostinex.
Facebook has a few support groups for this check them out prolactinoma support
This is an old thread but I found it searching "Cabergoline and suicide". I am not a depressive person, even when I had mild hypothyroidism due to my (giant) prolactinoma. But on even the relatively low dose of cabergoline that I am taking, I am having moments of suicidal ideation. It comes and goes, but when I am in the throes of this totally irrational feeling, I feel utterly worthless and full of self-loathing. It is a terrible feeling, and I know without question that it is caused by the cabergoline as things in my life are actually better since my diagnosis, overall. I spoke to my primary physician about this, and she also believes these feelings are a result of the cabergoline and fluctuations in my dopamine levels. I am trying to treat these instances with dopamine enhancing activities, but one can't always eat a pastry, do exciting activities, have a drink, or have sex, right when these feelings come on. It sounds kind of funny when I describe it like that, but I am afraid that one of these days I'm going to hang myself unless I get a handle on this.
If you cannot tolerate the medications, or the medications do not control the growth or symptoms of the tumor, then the doctor should or has to consider surgery. Prolactinomas should always be treated with medications first and there are a couple of options in the US and outside the US, more.
Surgery is a last resort and while it does resolve the prolactin issue, you will likely have to take thyroid if not other hormones for the rest of your life after the surgery and some on a temporary basis after surgery (hopefully not forever). The number of hormones you will have to take depends on a couple of things - the skill of your surgeon so you want a very very very skilled surgeon and the tumor, some are simply easy to remove and some just wrap around things and that can just make things more complex and lead to more issues. So anatomy can make issues too.
The surgery itself is not bad as long as you have a really really good surgeon. I cannot stress how important a good surgeon is.
I had my prolactinoma removed - but that was also because I had a second tumor as well - Cushing's disease and it is only treated with surgery (although they do have some meds in development the meds cannot be used by everyone or long term).
Surgery is a last resort and while it does resolve the prolactin issue, you will likely have to take thyroid if not other hormones for the rest of your life after the surgery and some on a temporary basis after surgery (hopefully not forever). The number of hormones you will have to take depends on a couple of things - the skill of your surgeon so you want a very very very skilled surgeon and the tumor, some are simply easy to remove and some just wrap around things and that can just make things more complex and lead to more issues. So anatomy can make issues too.
The surgery itself is not bad as long as you have a really really good surgeon. I cannot stress how important a good surgeon is.
I had my prolactinoma removed - but that was also because I had a second tumor as well - Cushing's disease and it is only treated with surgery (although they do have some meds in development the meds cannot be used by everyone or long term).
I'm not sure rumpled i have often wondered that myself, but my mental illness was dx in 1994 and my high prolactin levels were dx in 2004 but i guess i will never know what caused what.
Horselip i can't tolerate the meds at all i would say i was very manic a few months ago they tried to put me on anti-psychotics i was that bad it was scary now i am of them i still panic and am anxious but not to the same extent, its whatever is in them that causes all the horrible side effects.
Horselip i can't tolerate the meds at all i would say i was very manic a few months ago they tried to put me on anti-psychotics i was that bad it was scary now i am of them i still panic and am anxious but not to the same extent, its whatever is in them that causes all the horrible side effects.
Hey there-
My prolactin levels are a little high still.(60-70) But I cannot take meds that affect my dopamine levels. They make me very manic and even cause hallucinations for whatever reason. So you are not alone.
Horselip
My prolactin levels are a little high still.(60-70) But I cannot take meds that affect my dopamine levels. They make me very manic and even cause hallucinations for whatever reason. So you are not alone.
Horselip
I would have to wonder if you really just had a *mental illness* or if you had a pituitary issue all along. Pituitary issues really mess with the emotional state of almost everyone I have met - including myself.
It is a shame people are not screened first - and as well - you were not monitored well it seems? I bet if you had surgery your *mental illness* would magically go away - it has for so many of us - either gone or receded in a great way.
It is a shame people are not screened first - and as well - you were not monitored well it seems? I bet if you had surgery your *mental illness* would magically go away - it has for so many of us - either gone or receded in a great way.
I was tried on bromcriptine but took an allergic reaction and had to get meds to take away the effect they never mentioned paradoel to me. I don't see them until February again but my levels were tested recently and they are rising again but slowly. I have a diagnosed mental illness which i have from i was 18 i only developed pitutary problems when i was 28, i was told it was stress of the mental illness which caused my prolactin levels to rise.
I have told them that regardless of high my levels rise i will not take dostinex again i never should have been given it there is a warning on it that it shouldn't be given to people with known mental illness as it affects the dopamine levels in your brain. It took months for the affects to wear of but my mental health has still been badly affected i am alot worse than i was before i started the meds.
I am not saying they are bad meds they worked well for me and i am not saying people shouldn't take them they save lives but unfortunately they almost cost me my life as i was hospitalized for attempting suicide.
The endo's just need to be more careful when prescribing them.
I have told them that regardless of high my levels rise i will not take dostinex again i never should have been given it there is a warning on it that it shouldn't be given to people with known mental illness as it affects the dopamine levels in your brain. It took months for the affects to wear of but my mental health has still been badly affected i am alot worse than i was before i started the meds.
I am not saying they are bad meds they worked well for me and i am not saying people shouldn't take them they save lives but unfortunately they almost cost me my life as i was hospitalized for attempting suicide.
The endo's just need to be more careful when prescribing them.
I was in serious therapy before I was diagnosed with the pituitary thing. I thought that I was simply nuts. As did my docs.
At one point I was on three psych meds? None of them really ever worked either. It was not until the pituitary issues were sorted that I became myself again. So hold out the hope and work with your endos folks. The good ones know that pituitary probs affect us psychologically. This is not to say that you can't have both but the pituitary gland has a big effect on our sense of well-being. HUGE!
Horselip
At one point I was on three psych meds? None of them really ever worked either. It was not until the pituitary issues were sorted that I became myself again. So hold out the hope and work with your endos folks. The good ones know that pituitary probs affect us psychologically. This is not to say that you can't have both but the pituitary gland has a big effect on our sense of well-being. HUGE!
Horselip
I would talk to your doc about moderating the dose - you should not stop dosing as pituitary side effects will step in - and that appears to be what is happening. Those are much more emotional and can increase the size of your tumor. Pituitary tumors have a lot of emotional aspects and you have to be properly treated in order to minimize those effects.
Are you being treated by a neuro-endo at a pituitary center or at a regular endo office? You need a neuro-endo.
Are you being treated by a neuro-endo at a pituitary center or at a regular endo office? You need a neuro-endo.
Same Problem; I've taken myself off of it for a couple of weeks because during the PMS cycle; I am an nut, for 7-10 days hate everyone, want to disconnect from everyone and love them a day or two after menses begins.. anyone experiencing this? and, how long after taking yourself off the medication do these side affects stop??? It affects my work and home life; major depression...
That makes alot of sense i messed about with the dosage levels some weeks i took three quarters of one the next week i broke in half, then the week before i got really bad i was in hospital and they gave me the full tablet so maybe that made it worse, but even before that my anxiety was sky high. I was allergic to bromocriptine, they said they will check the levels in February and if they are too high they will discuss what to do next then, the last levels were on the up though so i hope they don't go too high.
Definitely ask your endocrinologist to look at other medications. It's silly for docs to ignore quality of life issues, but it happens. Until you press the issue, it is unlikely that your doc will devote much energy to helping you find an alternative to dostinex/cabergoline.
As far as your side effects, I've been very fortunate in avoiding them (probably one of the few ways I've been lucky through this health nightmare I'm in right now). However, I've heard that a lot of fiddling with dosage levels, etc. can actually cause side effects to emerge. Did your doctor do a lot of adjustments to your medication?
Finally, you may be experiencing the effects of a hormonal deficiency or imbalance, which prolactinomas can cause. You may need hormone replacement of some sort. Good luck to you. This stuff *****, but at least it's not malignant!
As far as your side effects, I've been very fortunate in avoiding them (probably one of the few ways I've been lucky through this health nightmare I'm in right now). However, I've heard that a lot of fiddling with dosage levels, etc. can actually cause side effects to emerge. Did your doctor do a lot of adjustments to your medication?
Finally, you may be experiencing the effects of a hormonal deficiency or imbalance, which prolactinomas can cause. You may need hormone replacement of some sort. Good luck to you. This stuff *****, but at least it's not malignant!
Why do you have to take the cabergoline? Why not try parlodel? Why is that contra-indicated? Why not try another medication - there are others out there and may also be others in trial (like there are some available in Europe not available in the US) so...
Side effects - sadly an issue with many drugs! So surgery or radiation not an option? I myself would take surgery over radiation but you have to make choices...
Side effects - sadly an issue with many drugs! So surgery or radiation not an option? I myself would take surgery over radiation but you have to make choices...
Just to update, i stopped the cabergoline in April i couldn't cope anymore i was so scared i felt like i was loosing my mind, and i was right by July, August things were settling a bit, i still have anxiety and panic but not as extreme, my psychiatrist agreed it was the cabergoline making me worse and even the endocronoligst agreed that yes maybe the cabergoline was making my mental health worse. They are now checking the levels every six months he said if they go too high i will have no choice but to take the cabergoline again but no i said no way. I hope the lower dose is helping i ended up taking half a tablet a week and it still affected me badly, hope it works out ok.
yes I second that motion. I had a very rough time "mentally" with anything that affected/affects dopamine. I ended up having surgery 'cause I could not handle the side effects of the meds. It is great that that you are feeling better with a lower dose and avoidance of other triggers.
Horselip
Horselip
It IS the Medication. I started having morbid thoughts about death after 4 months of cabergoline. I started having SEVERE panic attacks about 7 months in. My doctor said the same thing, " It's not the medication." This is BS. I have NEVER had a problem w/panic attacks, being afraid to die, etc. I am a 27 year old stable person and this medication makes me crazy. Avoid all caffeine & alcohol as this makes the panic worse. I would look into anti-anxiety meds if you're going to stay on cab. I started 1/2invg my cab dosage and I feel better.
Thanks for all the help, i can't see anyone until July so i will talk it over then with him and i will mention all the thyroid tests. I could get my own GP to maybe get a copy of the last tests taken and see what they think. Thanks again
Always get copies of the blood tests - I learned the hard way not to trust the docs as I was told oh it is normal and I got a copy and it was not... so when you go there or call now, get some copies (or call the lab for the last set).
The doc may not be testing enough, or overlooking things such as what should be at the high end of the range is at the low end. Ranges are ranges but they ...well... eh!
For instance, if the endiot is just running a standard thyroid panel, useless! TSH is not useful to regulate meds when you have a known pituitary issue so you need to know the FT3, FT4 levels.
I would go to a pituitary center. The guy probably thinks this is simple, but pituitary is NOT.
The doc may not be testing enough, or overlooking things such as what should be at the high end of the range is at the low end. Ranges are ranges but they ...well... eh!
For instance, if the endiot is just running a standard thyroid panel, useless! TSH is not useful to regulate meds when you have a known pituitary issue so you need to know the FT3, FT4 levels.
I would go to a pituitary center. The guy probably thinks this is simple, but pituitary is NOT.
He is an endocronlogist not sure what part he specializes in. I did have panic attacks years ago before i was even diagnoised years ago. They just got worse lately, my prolactin levels are totally normal now though, my endo says the medication isn't the cause of it. I have had a lot of blood tests done and they were all normal. I couldn't get an appointment to see him until July and its been well over a year since i last saw him. Thanks for the reply i did google that stuff it was very interesting.
Hmmm.... it sounds like you need more symptom control. In that the pituitary is not being helped as those sound more like the pit, not the medication. Pituitary lesions have a lot of emotional and mood symptoms and it may be that you have more going on than just the prolactinoma. You never had mental health problems! It was the pituitary!
Have you had other testing on the rest of your other pituitary hormones? Is your endo a normal (aka diabetes endo) or a neuro-endo? You need to go to a pituitary center and get someone competent to check you out with a full set of testing.
The doc you have does not understand the emotional aspects of pituitary tumors - so not sure if he understand any aspect. If you put that in the search engine, you can find papers and books on it.
Have you had other testing on the rest of your other pituitary hormones? Is your endo a normal (aka diabetes endo) or a neuro-endo? You need to go to a pituitary center and get someone competent to check you out with a full set of testing.
The doc you have does not understand the emotional aspects of pituitary tumors - so not sure if he understand any aspect. If you put that in the search engine, you can find papers and books on it.
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
