Hi, great that your levels dropped and that you're going down on the cab, will hopefully decrease the moodswings and sickness. They don't go away but they are more manageable at a lower dosage, at least it was for me. Hope the results stay low and that you feel improvement. The most significant changes must be the regain of social life, energy to more activities when the sickness decreases and the like. Also the character change, as one can be "themselves" again.

I forget what that feels like. Thanks for the hope. I really miss me. They say u don't know what u had until it's removed.

yeah, would be great to be who I was over 7 yrs ago but a bit more mature though, but miss the energy and life quality. It is truly priceless, I think someone who goes through something like this and recover understands and appreciate life more than others, that physical and mental well being is not for granted for everyone, make the best off it.

Hi Linda,

I have had the same experience where the Endo looks at me like I'm off my rocker and on another planet when explaining all the symptoms SINCE taking the Cab. It is very very frustrating to be treated this way. It's almost like being "Gaslighted" I.E. telling us that what we are feeling and experiencing is not real, we are just imagining it. That combined with what the meds do, actually feels like I'm going Nutz. Lol...

How they can define our reality and tell US how we are feeling and do it with a straight face is beyond me. The only thing I can think is that they don't deal with a lot of Prolactinoma patients. The Jury is still out on that one. Perplexing !!

My endo is pretty good but has done the same thing to me on several occasions and for that reason alone, I have scheduled a second opinion. You know what you know, stay grounded and keep comming here for some validation.

I know for sure this site has kept me from going off the deep end at times and has given me the one nugget of hope that I needed to make it through a rough and challenging moment. Hearing an experience like yours, gives me hope to know that 'm not alone in this.

I notice that my personality has changed quite a bit too. I lost my sense of humor that was one of my coping mechininsm (sp) My sence of wonder is gone my drive and zest for life, positive can do attitude and it does feel like my spirit has been broken. Not sure if it was from a lot of financial loss from a bad period of depression prior to being diagnosed and or a very abusive family, or the effects of the prolactinoma or both but somehow I muddle through another day also understanding that it could be worse and being greatful for the few, who at the very minimum, try to understand.
Keep the sunny side up Sweetpea.

can relay to those things about the "openness" and acknowledgments that endos do. My endo seems to be in a belief that cab is a miracledrug with "minimal side effects" so the times I've told her about the side effects from it she said it couldn't be from the drug. It totaly made me feel like a hypochondriac when suggesting that these effects, and sudden heartpains, eatingdisorder and the like could have been caused by a drug "with minimum effects".

Well said Liam ! Right on the money!

Wow , I so agree with all of you. I have "fired" my last endo for her ignorance in regards to the situation. After over 20 years of this I just want to tell the doctors "Give me a break and get some updated education in regards to this." My last visit my so called specialist said stress would not affect my levels. I laughed all the home. EVERY time things dramatically change, extreme stress was my partner.
Anyway, and to Linda, sorry but this is for the rest of your life, not a few years. If you have an active tumor, even if it goes away, without meds it will come back. Sorry.

Oh my head often is foggy. Just wanted you to know that its a huge issue for many. You are not alone!

Hey I know. I have my tumor for over 20 years. I always went off the medicine because I could not handle the side effects .
But this time it took me down and it is from stress. The tumor was always there it was just waiting for that moment .
So I know I will have to be on medicine the rest of my life but just for today I was going to rejoy the moment .. See now that I am involved I with find a solution.. Whether I learn to lessen my stress thru mediation or yoga.. I will take the right vitamins and execise and eat right.. I was doing this before I fell out.. Not the stress part. I never had this undercontrol.
As for as my doctor. I go to the top neut. Jefferson hospital . But they still looked clueless but they have a staff of many doctors on board. Look everyone is looking for positive solutions and I am one of them.
My prolactin dropped from 1596 to 14 . I will take this for good day . Because bad is always creeping around the corner.
Good nite everyone
Linda

This topic definitely caught my eye. That's exactly how I would explain things... Everyone looks at you strange and you're lucky if someone (outside of this forum) actually understands. I've had all the same side effects; foggy head, nauseous, lack of drive/motivation, etc. I will state that they are more manageable after being on bromo for 6 months. Some side effects are still present but its no longer a 24/7 experience. I did have an endo that straight up stated to not blame everything on the medication. I left that appointment crying and knew right away I needed a new endo. I have some friends that are willing to listen but I never get the feeling that they truly understand. This is the same case as with my family. Its good to know that they listen and will provide support but the understanding behind it is not something that most people get. Ive been very appreciative of this forum as it has educated me on treatments, side effects and an overall well-being which is crucial to dealing with the journey that we experience.

I can totally relate. i have tried cabergoline and/or bromocriptine over 6 different times in the last ten years. (i have microprolactinoma of 6mm and prolactin level of 200). I have tried that medication and each time I fell into a deep dark depression, severe anxiety, and feeling sooo not like myself. not to mention nausea, sleep problems, and overall feeling sick as a dog.

I'm done with that medication! and I have finally found an endo who understands this. I am going for a consultation with a neurosurgeon for the cyberknife (radiation surgery like gamma knife) in two weeks to see if they can just remove it that way. I am praying to god they will because I want to have kids and have a normal life!!!

Yes, these meds do change your personality and can cause all sorts of Psychological and physical symptoms.

No, you are not going crazy. I think it goes with the illness...

This is certaintly interesting, have been reading some of the threads in the paranoia forum but it's really difficult to follow if the things some writes are considered normal or crazy, the line between this is not so clear but from what I've read there are some outstanding properties for paranoia;
- a person who thinks everyone talks about them all the time, various groups in various places
- a person that believes their "chosen" or has speciel abilities that other don't
- a person who believes there is an force on another planet controlling everything one does on earth
- a person who constantly feels hunted or watched, for instance that everyone on the street looks at him/her
- followed by strangers
- everyone talks in ill-will or conspiracy towards this person
Several of these and other conditions needs to be met to be diagnosed as paranoid

sorry..posted on the wrong thread