Week 10 on Cabergoline - does anyone else feel tired and dizzy?

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Hi,  

I was after some help - I was diagnosed with a Pituary Tumour which was producing too much Prolactin.  I've been put on Cabergoline and am on week 10.  

I am spending a lot of my days lying in bed, muscles ache and I go for days feeling tired and then I'm Ok again.

I often have a dizzy feeling which is very hard to explain - I'm still able to function but I'm very aware I don't feel quite right.

Since the diagnosis I'm also finding it hard to know which emotions are real or just my hormones.  I get very stressed easily and also angry.

I'm really struggling with this whole thing and although I'm not alone - feel very isolated and perhaps even depressed to be honest.

I'm freelance and have taken time off work - so perhaps this is making it worse - however I'm scared of taking on work and being too tired to do it properly.  

Any help or advice would be really appreciate - just be good to speak to someone who's had a similar experience.

Thanks

Sophie 

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  • Posted

    Hi Sophie

    sorry to hear about how you are feeling. you have my full sympathy.

    it could possibly be also the impact of the tumour itself that is making your feel this way. have you been in contact with the pituitary foundation? they have a lot of leaflets and there is a nurse helpline also, which you may find useful. she is very kind and understanding.

    although it is very hard especially if you are freelance (and thus self employed), please take the time to concentrate on yourself for the moment and get yourself better. if necessary, speak to your GP about maybe signing on for employment and support allowance?

    best wishes

     

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  • Posted

    Thank you so much for your comment - it really means a lot.

    I have an MRI scan next week to see what's happening with the tumour - I'm hoping it's gone as up until last week the Prolactin levels were back to normal.  I guess I'll be able to tell one way or the other whether it's the tumour or medication after that.  

    I didn't know about the Pituitary Foundation - I've just had a really quick look and looks really helpful, I'm surprised I hadn't come across that already.

    You're right about working - however feels so unnatural, I feel guilty about and worry the longer I stay away the harder it will get. 

    I guess it's all still quite early days so am still getting used to the whole thing.   Thanks again so much, I was really pleased to see a comment!  

    S

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    • Posted

      Hi Sophie, I was finally diagnosed with prolactinoma (caused by a tumour on my pit gland) after suffering terribly for 6 years - as an indirect side effect, my oestrogen levels were constantly being depleted even though I was taking HRT.

      When I was put on cabergoline, the relief was instantaneous.  I was taking 2 x 0.5mg per week.  I started medication in 2008 but whenever I try to reduce the medication, the terrible menopause symptoms kick in.  My endocrinologist tells me that there is no harm in continuing to take the medication.  The best I can reduce to is one every four days.  My boobs have reduced in size, but that is ok, I can fit into clothes better.

      My pit gland tumour was caused by having severe hereditary haemochromatosis which was undiagnosed for 9 years although I had all the classic symptoms (much like what you feel getting so bad I was staggering and slurring).  So ask your dr to run an Iron Studies test.  Not an iron test - it has to be Iron Studies.

      I hope this helps.  Let us know.

       

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    • Posted

      Thank you for sharing your experience with me.  It's interesting as I was put down to 0.25 a week for a short time then last week was asked to go back up to 0.5.  I wonder if the change in dose has had an affect.

      I'm seeing the Doctor next week so will ask about the Iron Studies test.  I've only met him once in September the rest of our communication has been on email or over the phone so will be good to finally sit down and explain to him.

      I mentioned last week that I was tired all they time and I think he was keen to put it down to a psychological reaction to the whole thing.  If that's the case it makes me feel just as bad - like my own mind is playing tricks on me.  

      It's reassuring to hear you haven't had too many bd side effects from the drug, perhaps over time I'll get used to it.

      Thanks again so much, it's really appreciated.

      Sophie

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  • Posted

    Hi sophie

    sorry to hear about your situation. My daughter was diagnosed with gigantism and extremely high prolactin ( 18000 ) when she was only 20 mths old . After her MRI her doctors put her on cabergoline twice a week , no change after 3 months so then we had to give her octreotide injections every day along with the cabergoline  still no change 7 months later. So when she was just over 2 1/2 years she had her first surgery for her tumours on her pituitary gland . After 3 months and another MRI and several blood test her levels ( prolactin & growth ) just kept getting higher so another operation at  3 year years this time the doctor had to remove her pitiuarty gland . So after countless blood tests her growth hormone is marginally high for her age and her prolactin is about 4 times higher than what it should be . It makes me feel very heart broken when I hear what the cabergoline side effects did to you , I hate to think what my daughter was experiencing ( she went off all food and fell over a lot ) doctors did say at the time this would of been one of the side effects ( nausea & dizziness

    my daughter from 3 years old has been taking tablets to replace all the functions that the piturtary gland does. Soon she will have to have growth injections, finally some of her class mates are catching up to her size . I hope your situation has a positive outcome soon until then stay strong and keep positive :-)

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    • Posted

      Sonya, it is so sad to hear of these afflictions affecting babies and young children.  Your daughter (and her parents) have certainly been put through the mill.  So much more than we adults.  I fought against surgery because of the problems for the rest of my life, but it appears that your poor daughter had no other options.  Did you ever find out why - ie. the cause? And I read that her levels are still very high?  I really hope this problem somehow resolves for your daughter.
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    • Posted

      We did ask a zillion questions at the start of her dramas but to be quite honest with you we put all our faith into her neurosurgeon . They say she was born with the gigantism and it's all connected . The poor kid also has other health issues , we are told that people that have rare illnesses usually have other problems . My daughter was always unsettled como aired to her older siblings , this concerned me and she also had a lump at the bottom of her spine ,I persisted constantly with her doctors to check it as they where just saying it was a fatty tissues from the giantism , but my gut feeling was right it turned out being a tethered spinal cord so this operation happened when she was 4 and then it re tethered again at 4 1/2 years . She must of been in so much pain when she was growing rapidly with the giantism and her spinal cord was tethered , this still makes me cry today . She is a very strong willed  natured 7 year old and she has a unique level of understanding about her health situation . I know this ordeal has had a huge impact on our family because at tines and still now she can be very demanding and moody . 
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    • Posted

      Thanks for sharing this, sorry to hear your daughter has been through so much, it's really shocking but sounds like you've done an incredible job of looking after her and helping her to understand. Also glad to hear she's a strong character & hopefully she's been through the worst now.  x

       

       

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  • Posted

    Psychological - pitooyi!  It is so annoying that drs blame imperfect reactions on the mind.  Really, they should be working harder to find out what is actually going on.

    I was given the same attitude when I was constantly complaining of severe fatigue and muscle pain for the nine years prior to being diagnosed with haemochromatosis.  Then again when I got the severe menopausal symptoms for the 6 years I had the undiagnosed prolactinoma.

    You should not be feeling like that - something else is going on, that is why I suggested you have your Iron Studies tested.  Your tumour is not likely to go away after only 10 weeks of treatment.  Mine took a couple of years of slowly reducing in size.  In the mean time the main thing is that your prolactin level is being reduced.

    In the future, if you go off cabergoline, try to make sure you have an MRI every year to keep tabs on it.  Something has caused it, and if you don't find the cause, it can return.  As it did with another woman I knew.

    Obviously the lower level of carbergoline was not reducing your prolactin level enough, (assuming you are having regular blood tests), so your dr has increased it again.  In the meantime, the reduction in medication would have upset your oestrogen.  Women with prolactinoma are supposed to supplement oestrogen, so that they do not lose bone density, as well as affecting their hormones.  You might find a reference to that in info supplied by the Pituitary Gland Assoc.

    You must have had some hormonal symptoms to lead to a diagnosis.  If you are still menstruating, you could have had leaking breasts, interruptions to your menses, etc.  

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    • Posted

      Thanks for your support - it's so easy to start questioning, friends have also commented that I'm making myself feel more tired and that's its in the mind so it's reassuring to hear from you.  They mean well but think it's hard to understand what it's like unless you've gone through a similar thing.  I think they think I should be able to just shake the tiredness off.

      I've taken on board the things you've mentioned ie iron studies & oestrogen and started a list to take with me next week.  

      My doctor said that there is no particular reason a tumour occurs - sounds like you've not found this to be the case?

       

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  • Posted

    Hi Sophie

    Thank you so much for sharing your experience with Cabergoline - I started this medication 2 weeks ago and have spent today searching for either support groups or tips to reduce side effects of these meds! I am 28 and from New Zealand, I was diagnosed with a micro-prolactinoma a fortnight ago.

    My first week on Cabergoline I had some nausea and a general spaced-out feeling, but to be honest I had read a lot about what side-effects to expect and I think I might have been imagining them. This week it was a completely different story! I take my dose (0.5mg/week) on Tuesday nights. On Wednesday I felt a bit nauseous and spacey but got through my day. On Thursday morning I woke up so light headed, dizzy and weird feeling that I wasn't sure what to do. Stupidly, I went to work. Three hours later my partner had to rush me to my doctor because my weird dizzy feeling was unbearable. My GP prescribed Ondansetron for the nausea, and said she thinks the strange dizzy feeling is connected to the nausea. She did stress that because Cabergoline is specialist medication, if these side effects continued I would need to go back to my specialist at the hospital.

    I was feeling more normal by the end of the day but was unable to go to work on Friday. I'm now absolutely DREADING taking my next dose. I understand from reading other people's posts that the side-effects are often at their worst for the first few weeks and then seem to ease. I can only cross my fingers and hope! I've made myself a little survival pack to take to work this week in case it happens again -  but I literally don't know how people continue to work through these symptoms! Luckily this week will be my last at work before the Christmas break and I hope that by the New Year my body will have adjusted to the medication.

    This whole process to diagnosis has been so stressful, but I was super relieved when the specialist prescribed the medication because obviously I would prefer not to be living with a tumour. It has been heartbreaking to find out that these magic pills come with a whole lot of issues.

    The weird dizzy feeling you describe is exactly what I'm feeling, it makes me feel better just knowing I'm not alone. Please let me know if you come accross anything that alleviates the dizziness.

    Thank you again for sharing.

     

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    • Posted

      Hi,

      Sorry to hear you're feeling like that - sounds like your dizzy spells have been a lot worse than mine.  

      I guess I've been on Cabergoline for around 3 months now but within that time I've changed dose so I think I'm still getting use to it and am still hopeful things will improve. 

      My only advice really is to keep a health diary/journal.  I hadn't and really have trouble remembering.  I started one a couple of weeks ago and it's already been really helpful.  

      Hope you feel better!

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    • Posted

      Hi nicolaw, I'm so sorry to hear you've been having some horrid side effects.  I was diagnoised with a prolactinema about 10yrs ago and was put on cabergoline for my high prolactin of (1500) and a tumour of 4mm  I was absolutley fine when i first went on the med and had no side effect. However 2yrs ago at age 50 i entered into perimenopause and all the terrible symptoms like feeling faint, dizziness, nausea, vision problems and fatigue. I had millions of tests all coming back ok except my BP is low and keeps dipping.  I will be on the cabagoline for life as far as i'm told. I have a MRI every 2yrs and have had a bone density scan not so long ago. I do get a lot of headaches and always have done.  My last prolactin level was 240 (Aug 2014) and i'm due to see the specialist in Feb so i'll see what it is then. take care nicolaw
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    • Posted

      Hi,

      I know this discussion has been going for a while now but I was only recenlty diagnosed with a microprolactinoma and I am hoping there is someone that can help. I was put on Cabergoline and begain taking it this week on a thursday night. I woke up friday with the dizziness/ fatigue and dry mouth that has been discribed in this thread and it seems like its getting worse. I work full time and can not afford to take days off because of this nonsense so I have a few questions, one: will I stop lactating soon, or will my breast stop hurting? Two: how do I get past the dizzy feeling, or what can I do to calm it because it is constant and worsening. Funds are tight so I can't afford to go back and forth to a doctor to have him tell me its delusional. Also, what did you put in that survival pack? Did it help?

      Thank you for taking the time to tell about your situation and  I hope things are going better for you.

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  • Posted

    There may be something in this website which may help.

    http://pituitary.asn.au/Adults/ConditionsIntroduction/Prolactinoma.aspx#Treatment

     

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