Hi

I also have a 8mm prolactinoma, originally 22mm, and I am taking Cabergoline. I am very fortunate to say that the Cabergoline has reduced my tumor and my prolactin and I generally feel well. I am not too sure about the association between alcohol use and the prolactinoma as I didn't / don't drink too much. For me there were a series of events that could have contributed to my prolactinoma but I guess that I will never really know why it happened.

I would seriously recommend that you see, or at least speak to your endocrinologist regarding the pressure in your head and ringing in your ears. I know before I was diagnosed I used to have splitting headaches and I would often have banging noises inside my head, strange I know but they did happen!! These headaches disappeared once my prolactinoma started to shrink.

I hope that this has helped a little bit and I am sorry if I waffled on too much.

Take care xx

Hi bugsy

I have a 7x5mm tumor (originally 6x5x6mm). You should talk to your doctor about a treatment and diagnosis there are alot of questions in the begining. There are good days and some bad days. I have found it helpful to keep a notepad to write any concerns or symptoms between doctor visits.
When I first started on Bromocriptine, there were times when I would have some confusion and lose my focus or forget certain words. I also experienced not so much ringing in my ears but pressure followed by a bout of dizziness which my primary doc diagnosed as Vertigo. As a result of the side effect I stopped taking the Bromocriptine. I have not been on the Cabergoline long enough to determine how well it is working yet. But have not experienced the confusion I felt on Bromo. It seems that side effects likely occur when you first start a new med or when a dosage is increased others say once you adjust this is less problematic. Alcohol may increase the side effects of these medications. After 2 years of treatment, my period has not returned and prolactin levels go up and down still. There are guys in this group who have posted on the Male Prolactimona Experience you might want to read some old posts and chat with them too.
Good luck!

Bugsy76,

Jumping in and others can clarify add to and definitely correct I am not an MD

1) Well from what I know the prolactinoma while not cancerous is residual. We can maintain or minimize and maintain it with medications such as the cabergoline. I am on cabergoline as well. It is something we get to live with fortunately or unfortunate. So can it be beaten or cured you need to take that up with your physician because they should be more familiar with you and your options. The way it was explained to me I have it I can have the tumor removed but even after that it will return within 2-5 years and I will either need another surgery or back on the medications.

2) Cabergoline could shrink the prolactinoma. Will it well mine has not yet, but I have only been on the meds for 2 years. Some have been on them for longer and seen results (boozygirl) and others have not. It all depends on how the tumor and body respond to the medications. Can it give back mental clarity well the thing is the side effects of the medications cause some issues with mental clarity in their own right so that is a tricky question. The tumor can cause (depending on the position) by size due to intracranial pressure and nerve intervention some issues; the chemical imbalance is the key with how it interferes with our mental clarity and status. So if there can be hope that if the medication stops the tumors secretion that that alone can help with normalizing some of the mental clarity then there is the side effects but one step at a time.

3) I have not identified anything along these lines personally. But again the human body/emotions are not a simple consideration. The use of drugs or alcohol to self medicate could be related. If I may (and please take no offence) take a blessing in disguise and let this help you separate form those things. Although I did drink before I cant at all now. Some has to do with the fact that if I have any inability to hold in fluids I have to receive certain meds IV so I get to take a trip to the hospital but if something is off (and I wont know if) and I drink even one beer I will feel ill for several days.

I know that to an extent this seems a little disheartening. It kind of is but it gives another perspective on life. It has given me a new way of looking at things. If you have any other questions just ask on here. I am sure more replies will come along so dont just read mine.

Best of luck!

M

Hey Bugsy,

I too have a rather large prolactinoma, Im my experience of going roughly 5+ years without diagnosis I'll answer your questions based on my experiences.

1. This question is best answered by the doctors treating you.
2. I've only been on Cabergoline (.5mg 2 x weekly) so this may be placebo speaking: I've noticed short bouts of mental clarity and balanced emotions. I would love to hope that some degree of "normality" is restored. It wouldn't hurt to bring this to the docs either (if you havent already).
3. Before diagnosis I was certain that my problem was stress and/or some mental state that I was slipping into. I admit that life has asked a lot of me in the past years and figured that to be the case. If you feel that your consumption of alcohol/drugs is attributed to the hormone imbalance resulting from the prolactinoma, try reflecting on your motivations to partake in their use.

Hope this helps!

I completely understand what you are going through. I have also been diagnosed with a microprolactinoma but I am having surgery on 9/19 and VERY NERVOUS. I decided to skip the pharmacotherapy and opt for the surgery. I haven't heard of many people doing this but for me... it's the best option (in my opinion). I have done TONS of research on my behalf and found that taking meds for the rest of my life was definitely not something I could handle as I am only 23 years old. In a lot of the cases, Cabergoline can shrink the tumor, but I was told if you stop taking it then it will grow right back. I can't answer your questions from experience, but from what I gathered on other chat pages, people still have problems with mental clarity and feeling depressed/angry/ confused... all around cognitive problems. I have been suffering a laundry list of symptoms- debilitating headaches, no periods, breast milk (not pregnant), infertility, no sex drive :( mood swings (almost to the point of rage) memory loss, cognitive problems (not being able to think clearly, hard to understand people or articulate what I want to say-pretty much feeling dumb) anxiety... should I go on? There's a lot more. Point is... I heard of many people still living a poor quality of life even with the medication. In my case, I have a 80-90% chance of being cured with the transsphenoidal surgery (microprolactinoma with prolactin levels under 200 ng/ml) The surgery is VERY LOW RISK... especially if it's a microprolactinoma. I found out about this while doing my own research, finding my own neurosurgeon. My doctor called me and said " You have a pituitary adenoma. It's fine, you'll take medication that may be lifelong such as cabergoline or bromocriptine and it will shrink it" and referred me to a endocrinologist. Didn't tell me surgery was even an option. Lots of people like to try the medications first and if it doesn't work, opt for surgery. The earlier, the better chance of being cured, usually within 6 months of starting those medications because they make your tumor fibrous and more difficult to remove (and decreasing chances of you being cured by surgery) Do your research and make sure you get ALL of your options and then you choose what's best for you. Don't take a backseat to your health. My husband and I are trying to conceive and although women have been successful conceiving while using these meds, I personally feel that ANY medication could be harmful to your unborn child, whether it's now.... or later in life. Also, either cabergoline or bromocriptine has been reported to cause heart valve problems after long term use. My family has a major history of heart diseases/ problems and a lot of them have unfortunately died before the age of 55, so I rather stick to the surgery and pray that everything goes as planned. I am so sorry for the long post. I wish you the best and I hope that you can finally find relief for all of your symptoms. We'll all get through this. Hugs to all of you!

Great Post Misschristal !!!

I completely agree with Misschristal, living a poor quality of life on these meds is just not an option.
The Cab and the Bromo have been reeking havoc i my life and destroying my relationships. Bugsy 76, Just prior to being diagnosed, I had the head pressure and funky weird headaches, sinus like, sore spots and spiky pain mainly on the right side of my noggin.

Went to a neurologist and took Gabapentin for a short while, then Butalbital for about 3 weeks and headaches went away.
The doc seemed to think they were tension type but I did have the pressure behind my eyes and a feeling like there was something there. I wouldn't call it pyscosamatic. We know our bodies and it felt real.
Yes Major ringing in the ears have had it for years sometimes it's worse and sometimes it subsides a little but always there.

Like Misschristal, I am off all meds and going to have surgery. You can tell she has done here research and homewook on this.
Great post !!!! I'm going to sked surgery mid Oct, still doing research on who is going to do the surgery. Best of luck with everything and concider joining the Pituitary network asso. or at least brouse their site.

This is also a great site, http://www.brain-tumor.org/88_What_When_How.html

It has a support group section with alot of informative videos.
Kind regards and tailwinds in healing, dealing and feeling better.

hi there,

as we have seen across this brilliant support group, many folk have had results or experiences which are 180o away from any other given opinion or experience.

we all have individual medical histories, stress coping abilities- (one thing we do know is that prolactin levels are indexed to stress levels/circumstances) different sized tumours at diagnosis, various symptoms etc.

as the tumour was found very very early, i had not had any symptoms- it was discovered on fertility tests. i felt trashed on the bromo- very fuzzy thought processes, zero energy, flat mood, headaches- none of which prior to the meds. as i am trying for a baby, my 3rd endo decided that caberg might be an option as it tends to bring prolactin levels down more quickly on average than bromo but that bromo was an older style of med and less expensive.

i was advised not to take bromo or caberg and certainly in the uk, the literature whiuch comes in the meds packet states do not take alcohol whilst on such therapy. i have never been much of a drinker anyway, so haven't had alcohol symptoms that i would liken to med symtpoms.

after only 5 doses of caberg ( 250mch twice weekly) has slashed my prolactin from 1370 to 550, which is within normal range in iUi measurements- various labs measure in different units of course.

all of a sudden i feel as though i have a bit mroee nergy back, feeling much better, no headaches , more mentally alert- big changes in less than 3 weeks!

of course we are all different, some folk can't tolerate caberg.

i have seen on various posts that tumours won't resolve 100%, and equally, some folk have had a clear MRI ( postdynamic gadnalinium- very sensitive) and have maintained normla prolactin levels without meds for years after. again, so many anomalies. some endos feel that some tumlours will burn themselves out after 3-5 years on caberg ( that is to say, some have been known to do so)

it will vary from the lived experience of surgeons , to those of endos to patients- we have to try and make our best choices and where there is the option to try different things, to do so if appropriate - keeping our medics informed for propriety and courtesy and our own benefits. although i am very open to considering it, sometimes complementary/alternative notions are more unsafe compared with established medical pathways- not all of which are necessarily perfect.

i personally believe that this condition can be beat in cetrain folk/circumstances- it may vary and i do believe in the mind-body inlfuence and for some folk, deep down they may not be open to that idea and have their own reasons subconsciously, that they do not want to give the condition up- after 25 years of a professional general observation of all manner of disease, not this specific condition necessarily.

we are all doing the best we can and need to be postitive and kind to ourselves.

i wish you very well!

: ) x