Other Anyone have ecperiance with prolactinoma?

[Fadeaway]

I am trying not to be scared, but damn it, even though I know it isn't cancerous, just knowing that it is a brain tumor is freaking me out bad. I am supposed to take me second does of the medication to treat it tonight but it made me fee pretty yucky the first time. It is a twice a week medication called carbergoline. My T and psychiatrist are hopeful that it will have a positive effect on my mood because it is a dopamine agonist but the first does just made me feel weird. The side effects are supposed to get better but I have been reading some scary stories online.

My husband has been great but I feel like my my medical professionals keep acting like it isn't a big deal. Um hello, it is a tumor in my brain. I don't care if from a medical standpoint you guys aren't all that worried, but it is scares the shit out of me.

A little more empathy from the endocrinologist and neurosurgeon would go a long way to making me feel a bit better about.

 

[Anarchy]

Hi Fadeaway,
Sorry that you are going through this.

I've a limited understanding of Prolactinoma. Iirc, it's on the pituitary gland, rather than the thinking part of the brain, and it's main effect is producing too much prolactin, with all that that implies.

Dopamine counters prolactin, which is why people of either sex who get psychiatric Meds that reduce their dopamine levels, can end up producing milk.

Extra dopamine and dopamine system agonists can have psychedelic effects. Dopamine is the body's happy chemical, so the weirdness usually feels positive, and according to psychedelianauts, it's pretty easy to learn to direct or to just enjoy.

Hope that this is reassuring.

@

If you are a tissue match, the prolactinoma is welcome to come live with me ;)

 

[Fadeaway]

Never had so many physical symptoms at once. Why can't a catch a break with my health. The side affects from the meds are pretty bad, then there is the migraine pain, plus I have the flu, so coughing, sore throat, sinus pain, and on top of it I started my period and have never had cramping this bad in my life. Feels like a flaming sword stabbing me in the stomach coming out right at the base of my spin but the my back is spamming and feels like back labor. Thankfully it is only every few hours and goe through about 3-5 waves of this in a about a 15 minute period and then it subsides for a few hours but my right rip also feels like it is being ripped from the socket when this happens.Read a few stories from a few people who had this their first couple periods after starting the medication. but for goodness sakes too many medical symptoms all at once. This better be a once in a life time deal.

 

[Deleted member 541]

Hope that you feel better soon @Fadeaway.....

 

[To OP]

In 2015 I was having issues with my hormones (25 M) so rather odd considering my age.. At the time I felt extremely overwhelmed due to exams, relationships and over working myself... I ended up her going to the docs due to an increase in gynecomastia, bloods were taken and indeed my hormones were out of whack, in particular prolactin.. I was sent to an endocrinologist.. Waited 4 months for a MRI while the whole time I thought I may have a brain tumour.. No answers were clear. Anyway I ended up having a brain MRI scan, then a month later saw the endocrinologist again.. The MRI had cleared me of a brain tumour and my bloods were normalizing.. The endocrinologist just explained that sometimes these things just happen..


In mid 2017 I got diagnosed with Complex Trauma, I look back now on that time in 2015 and think wow no wonder I was overwhelmed... Personally I feel that period was related to cortisol from extreme stress in combination with Complex Trauma. My hormones would have been greatly disturbed due to Cortisol.. I still get gyno now and I feel that my hormones are constantly up and down.. Personally I feel it's due to stress.

For now I'll assume it's due to Complex Trauma and that I should keep an eye on my bloods.

I hope this insight may help, especially if you haven't had a confirmed MRI. All the best.

 

[DissociattedSoup]

Hi Fadeaway,
I have only just joined this forum, but saw your post from earlier this year. I was diagnosed with a macro-prolactinoma in 2006. I too started on cabergoline (dostinex) and had similar effects to you. I take 4 tablets a week (due to the size of my tumour, 4cm when diagnosed). I can assure you that your body does get used to the effects and they will minimise. As you started in January you should be seeing them resolve a little now. My main issues came from the destruction of my pituitary gland, and it means I have to supplement all my hormones including growth hormone. If your pituitary is in-tact then you should not have any adverse effects. The only real side-effect I had from the cabergoline was a slight gambling addiction (to scratch cards strangely?) that I soon cut out.
When I started disassociating in 2016 my endo (who was the first person I told about it) indicated that it may be the cabergoline causing these symptoms. This was based on cabergoline causing "hypersexuality". When I explained that sexuality had nothing to do with my dissassociation and why (after 10 years on cabergoline) had these symptoms only just started, he revised his thoughts and suggested therapy.
As for it not being a big deal, well it is and it isn't. First off it is not going to kill you so that lowers the stakes a bit. It also is not in the brain, so not going to cause any brain damage. Mine was wrapped around the optic cord, so there was a danger of going blind, but cabergoline reduced the size enough for that not to be a problem within a few months.
I would say that regular MRI scans are important and blood tests for your prolactin level. If the size and the prolactin level respond as they should you will be fine.
I hope that helps a little, if you need any more info then please ask away!
Hugs
Sarah xx

Oh yes, nearly forgot, the migraines. I was told to take cabergoline in the morning, and got really bad heads a couple of hours after. I switched to taking them last thing at night, and the headaches happened whilst I slept and I was okay in the morning and for the rest of the day.
The period pain is just the effects of the prolactin leaving your system and it "rebounding" a little. Your body has been acting like it is pregnant for a long period of time, and then the brakes have just been released. Again, as this was in Jan, you should be getting a bit better now.
Sarahxx