Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
Hi everyone
Tomorrow I have my first appointment with a therapist .. Something is just not right with how I feel. Today again my eyes burn an nose . I went to nose and throat doctor yesterday and he saw nothing and never hear of this. All of this happen with my tumor and prolactin. I never had anything like this before . So I am going to see if this is in my head. This is what everyone thinks..
I took my cab last night and today my stomach is in pain and going to the bathroom a lot.
This medicine is terrible. Anxiety . Stomach pains. Eyes burning, just sick. I have been on since May. The side effects are getting worst than better.
So of my friend on this support group. Well everyone is my friend . Suggest to change medicine. Am I not giving this enough time to kick in my body.?
I will go to a therapist because this will help me to talk to someone. I don't have a lot of friends. So my husband and sister hears most of this and they both think it's something going on mentally . I was going thru a lot of stress before I started to feel funny . I had mu tumor since 1987 took medicine and felt fine. Stopped everything until this March. I felt dizzy. Blurr eyes and tingling feeling in face and arm. So I went to the er and they said panic attack and saw the tumor. Went to enco
And MRI showed tumor and prolactin 1596. Now I am at 14 won't know about tumor until December if this went down . I had more blood work to check to see if the tumor did any. Damage. Thank god this came back negative. But I feel terrible.
Need some positive feedback.
Thanks for letting let this out
Linda
Tomorrow I have my first appointment with a therapist .. Something is just not right with how I feel. Today again my eyes burn an nose . I went to nose and throat doctor yesterday and he saw nothing and never hear of this. All of this happen with my tumor and prolactin. I never had anything like this before . So I am going to see if this is in my head. This is what everyone thinks..
I took my cab last night and today my stomach is in pain and going to the bathroom a lot.
This medicine is terrible. Anxiety . Stomach pains. Eyes burning, just sick. I have been on since May. The side effects are getting worst than better.
So of my friend on this support group. Well everyone is my friend . Suggest to change medicine. Am I not giving this enough time to kick in my body.?
I will go to a therapist because this will help me to talk to someone. I don't have a lot of friends. So my husband and sister hears most of this and they both think it's something going on mentally . I was going thru a lot of stress before I started to feel funny . I had mu tumor since 1987 took medicine and felt fine. Stopped everything until this March. I felt dizzy. Blurr eyes and tingling feeling in face and arm. So I went to the er and they said panic attack and saw the tumor. Went to enco
And MRI showed tumor and prolactin 1596. Now I am at 14 won't know about tumor until December if this went down . I had more blood work to check to see if the tumor did any. Damage. Thank god this came back negative. But I feel terrible.
Need some positive feedback.
Thanks for letting let this out
Linda
When I first started taking cabergoline I was all over the place mentally. I didn't know what was me and what was drug/tumour related so I went to see a therapist. I have lots of friends but didn't want to burden them with how i felt. My therapist has helped me a great deal even though she doesn't always understand the tumour and effects. Before I was diagnosed I would never have ever considered therapy but I was in such a bad way and I was frightened for myself and what I might do. I could see no harm in giving it a go bearing in mind I was so low that some days I didn't think it was worth living. Fast forward 18 months I still get down (the medication is a huge factor) but I know what it is and can cope with it and I generally feel much better.
Hope it makes you feel better.
Melissa x
You took the words right out of my mouth. There are days that I just don't care. I am so depress and just tired. My husband has health issue also and I feel so scared. I had my tumor for 20 years but always went off the medicine because I could not take the side effects. I know I have to stay on the medicine this time because the tumor started to effect my eyes. So I know it's the medicine . That's what depresses me.
But you did give ms hope to know that you do feel better. Did you have to go on antidepressions ?
Thank you for taken out your time for me. I really needed that.
Linda
Thanks for your support. It means a lot to me
I not one to talk open about how I feel but it's does help . So after 4 years how are you with everything? Are u on cab.? Does this pass?
Thanks
Linda
I didn't take anti-depressants because I was concerned that I would be putting another chemical in my body and what side effects they may have. I have also had a family member who suffered when she took them and it put me off.
When I went to my doctor and told him I was depressed he didn't take it seriously at first because depression at that time was listed as a rare side effect. However, since I began taking cabergoline the leaflet has been changed and now it is listed as a common side effect. Interestingly depression is more likey if you take less that 2mg a week (most people tend to be on this or lower especially at the beginning).
There have been times (particularly as the dose kept increasing every 6 months) where I've wanted to stop taking the drugs but everytime I had my bloods done the hormone levels almost always decreased and I could see the benefit. That's not to say it wasn't hard. I try not to think about it now (I've called my tumour Casper) other than when I'm feeling down and then I'll speak to it. I really believe personalising it helps because I can get angry with it (and believe it or not) grateful for it (I was stuck in a cycle and Casper made me reassess my life). I think the main thing Ive learned is to give myself a break and don't give myself a hard time when I don't feel great or when its obvious I don't deal with things in the efficient way I used to. I am who I am and if having Casper makes me a bit slower sometimes then I just have to accept it. As a previous poster saud, it is the acceptance that is quite hard.
Sorry to ramble. I just hope that whatever I've said helps in any way x
Melissa x
I luv your tumor name!!! I just names mine Belinda the good witch !! I know it's not easy to stay positive but I really love your attitude .
So I went to this therapist . She was not what I was looking for she gave me so homeopath medicine instead of Xanax. At first I was like this is good but when it worn out it was the worst. I thought I was going to the hospital. My body was hot and my breathing was bad. I still feel funny.
But I will try anything to help . I have a appointment on Monday too see another one. I am just looking for someone to talk to and help with breathing for my anxiety .
But thanks again for sharing your experience. That's what it's all about.
Linda
Great name. :) take it you're a wicked fan? I choose my name because I'm from the uk and we have a cartoon called Casper the friendly ghost and I thought it summed it up nicely for me.
I'm sorry to hear that your therapist didn't help but don't be disheartened, there will be someone out there to help. In the meantime, these boards are brilliant at allowing people to talk about how they are feeling. Another thing that helped me was keeping a diary of how you feel and then you might start to see a pattern. It also helped me to put my thoughts down, thoughts that I couldn't share with others.
Melissa x