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Fuzzy Head on Tamoxifen
Tue, 10/01/2012 - 13:43
#1
Hi,
This may be a duplicate posting -so apologies.
I have been on tamoifen for a year now, and for the past 3 weeks have had a really fuzzy head. It's not a headache as such, more of a wooley head feeling.
Every time I get a new packet of tamoxifen, the brand changes, so wonder if this could be the problem.
Finally plucked up courage to make an appointment with my GP, but I'm going into worry overload!!
Any one had this feeling whilst on tamoxifen?
Any advice would be really helpful - thank you.
Dotty 2 xx
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Utterly, I could'nt think straight at all, totally lost my focus, heaven knows how I kept on at my work. I quit the tabs for surgery and never went back, despite my onco's rcommendation: I live alone and the risks that I would leave the gas on, lock myself out, overflow the bath and flood the lady downstairs etc etc quite apart from the risks at work and my family responsibilities, it just wasn't worth it.
Gosh the real menopause is going to be a right party.
(
I'm very impressed you've managed a year in this state Dotty. Only four more to go?? Changing brands certainly won't be helping, maybe the GP can gently kick the pharmacist into keeping you on one brand.
I used to take it at night which helped with the hot flushes, and I'm told you can take it in divided doses which may help other side effects so p'rehaps it will help with this too. Other than that - just loads of notebooks. post-its, reminder systems and alarms, and your Very Good Sense of Humour.
Im sure the GP will have something to help maybe counselling or group support, the issue may be how to explain it clearly before s/he has glazed over... write it down before you go or take a family member or close friend to talk about you, how you are not your normal self these days! Often other people can summarise the symptoms, although of course not how it all feels from the inside, much easier than we can ourselves, even if it is embarassing.
Hi,
Thanks for your advice.
I'vw got an appointment with the GP soon so will talk it though with her, and hopefully keep to the same brand, At the moment feels like my head is stuffed with cotton wool! Uhhhhhhhhhh!
Dotty2 xx
It took me a while but I eventually realised that my worst SEs (including the fuzzy head) coincided with taking Wockhardt branded Tamoxifen and that I felt much better on APS brand. The active ingredient is the same in both but some of the additives are different - you can check these on the Patient Information Leaflets which are available for each drug. You can find them on the internet. Different people find different brands suit them better than others, just try them and keep a diary of which ones you took when and how you felt on them. It's very easy to forget the details, especially with a Tamoxifen fuzzy head!
Cheshire Cheese.
Thank you. I will look it up on the internet. Take BP tablets, so may be someting to do with that.
Dotty2 xx
Dotty
I found it was when I kept getting switched round I had the most problems, tried 3 different brands for a period of time of about 8-9 months and monitored it, for me generics is the least problem. But definately the swapping and changing which was the worst
aa
That's interesting Cheshire Cheese because I was only on one brand throughout - wockhardt! Nobody suggested changing off it, my pharmacy was very consistent with sticking to it, and I didn't know to ask. I get pretty bad weepy/crabby/confused mental PMT anyway (especially if I forget the salt-restricted days) so I just put it down to the hormonal imbalances that you expect on Tamoxifen when the whole purpose of treatment is to interfere with hormones. Maybe there's hope for me yet then. Thankyou.
It may also be of interest to know that even if you do get SEs, these tend to reduce over time, even on the same brand of Tamoxifen, as your body adjusts. I initially found the main problem was night sweats, waking up with sweat running down between my boobs (sorry if TMI!) but that very rarely happens now. I also found my memory was awful for the first few months and that too has gradually improved.
Many women going through a natural menopause experience these problems, it's just that us BC people are thrown into it overnight by the medication.
Hi Dotty2
I like CheshireCheese had major problems with the Wockhardt brand, my joints practically seized up and I would hobble into the bathroom in the mornings. However with APS brand i find the symptoms so much more manageable.
My Dr has now agreed to write me out a 6 mthly prescription so my chemist can hold my brand in stock allowing me 2 mths worth at a time.
This arrangement works perfectly after mths of having to ask them to exchange my pills. My chemist is part of a chain and they said they never knew which brand would be delivered each week.
If you search the forums for APS there have been a lot of women that have felt as we do about the side affects caused by different brands which are caused by the bulking agents used.
Big hugs
Stella x
I started on Tamoxifen last February and the first lot I had were Generics. I suffered terrible sweats at night and felt quite sick and light-headed. I put it down to just getting used to Tamoxifen. Since then until two weeks before Christmas I was taking Wockhardt and after the first month or two the night sweats lessened and I never did have the sickness or light-headedness again.
At the beginning of December when I picked up my prescription it was Generics and I have had the most awful month with terrible night sweats again, light-headed and hardly any more that 3hrs sleep a night. As soon as our village Chemist opened after the Christmas break I went in and asked if all future prescriptions could be Wockhardt. While she couldn't guarantee this and spoke about other brands, she made a note not to give me Generics again.
I think if she'd said no I would have burst into tears to be honest. I've been so stressed about the SE this past month.
I am due to go and collect my new prescription tomorrow so it will be interesting to see which brand I have got.
Karen
Hi. I too have developed a fuzzy head. Ive been taking Tamoxifen since September 2011, but have only noticed the head in the last 2 or 3 weeks. Feels as if my head, as you say, has cotton wool in it, or as if someone has thudded a hard back book on my head!! Like a dull feeling. Particularly at my temples.
I am also taking the Wockhardt brand, and have only ever taken these, as I am on a prescription collection/delivery from the same chemist, so I presume this is the only brand they stock.
My concern is that this feeling has only recently developed, despite being on Tamoxifen since September.
Is this ok? And will it settle?
iam starting radiotherpy next tuesday and have a couple of packets of tamoxifen i know ishould be takeing them now but want to finish my treatment first or should i take them now all i seem to do is dither not just on this but everything. iam on two sets of anti bio for a boob infection and my life revolves around tablets befor bc i never took any kind of tablet, not even the pill lol any one got any ideas when best to start. this is my first time on a computer so no punctuation hope u all took a deep breath and my spelling is rubbish
yvonne
Hi garden party I was told to start tamoxifen after my radiotherapy sessions which suited me fine I am like you didn't want to start everything at the same time glad I didn't because I had sickness during therapy took anti sickness pills and was fine then but wouldn't have like to be taking tami at same time. I would definitely ask your onc though just to check it out then you won't be worrying, good luck with rads and don't forget to keep slapping on the cream it really helps
Gardenparty, I didn't start on Tamoxifen until about two weeks after I'd finished rads. Onc said it would be fine to have a break between treatments so I wouldn't worry too much about not taking it just yet.
Karen
Hi, I've been on Tamoxifen 12 months and the side effects are making ne depressed hence I have decided to take myself off it (against the nurses advice) I feel unbeliveably so much better, everyone has commented how much brighter I am, I have more energy, I do not ache all the time etc etc... I really dont know what the answer is here, I have been advised to have my ovaries removed, something I will have to consider although I have heard so many horror stories. I tried different brands and splitting the dose but havent felt any different..I dont want to be depressed and achy for the next 4 years but what are we supposed to do???
Hello baby4
Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.
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Best wishes
June, moderator
I'm another one who is experiencing problems. I've been taking it now for 2 years and have the woolly head, forgetfulness, headaches, fatigue, joints aching like hell. The hot flushes were a nightmare but on the whole these have reduced with time. Sadly the other side effects haven't.
I'm on Wockhardt brand and have had APS but from what I remember I still felt the same although i suppose you would have to have a different brand for probably a couple of months to feel any real change? - I might pursue that.
Apparantly some people find it helpful to split the dose ie have 10mg and 10mg at night. You can, I've been told, get tamoxifen in 10mg dose. I'm just trying this but as the Wockhardt are so easy to split I'm doing it with my 20mg tablet.
I'm 47 and the other thing is that I know that I am peri-menopausal. This means that I'm still ovulating but that my hormones are going through surges and dips. I'm guessing this is probably having quite an impact.
Chemo put me into a temporary menoapause (18 months) and I have definitely felt much worse since I've started ovulating again.
I too have had to give up work which is soul destroying and financially very difficult.
Elinda x
Hi just to add my experience, I have had major problems with Tamoxifen, in terms of fuzzy head, memory loss, unable to think, not sleeping and extreme fatigue - basically feeling like a zombie. Final straw came when I had some sort of panic attack (never had one before) - when I was pitching to try to get some work (I'm self employed and a single parent - if I don't work I can't pay the mortgage!). I was mortified - not surprisingly didn't get the work! and decided then that I had to stop taking it.
Within two weeks my brain and energy have returned - I've spoken to my oncologist and been to see a gyneacologist as I'm looking to have a hysterectomy to take out the ovaries and also because I have very heavy, painful but irregular bleeding.
Onc still recommends staying on the Tamoxifen until then but tbh honest it was getting me so depressed because I felt unable to function. I've taken it for 2 years - my SE got worse over the past year - so really have tried and feel I've given it a go and it's not for me.
Although some people I've told are horrified that I would stop taking it ('its only a tablet''doctors have told you to take it' etc!) you can only make sure you're well informed as possible and decide what's best for you.
XX
"It's only a tablet"?! Yeah, and so is ecstasy and most people wouldn't say THAT doesn't have a big effect, even though it's "only a tablet"...
The SEs from Tam are different from those of chemo, but they last longer (5 years compared to 5 months) and get a lot less sympathy! That said, Tamoxifen is a potent drug in the treatment and prevention of cancer, so it's not a small decision to just stop taking it. I have another four and a half years to go on it. I was at my GP's last week and said I really didn't like it. In a bit of a panic she said "but remember it's keeping the cancer at bay". My reply was that she didn't have to worry, I'd keep taking it, but I reserve the right to whinge about it as well.
I was top of my class at staring into space at school but it's out of control after 6 months on Tamoxifen! I'm also a self-employed sole-trader -single parent,so there's no one to give me a kick! I'm just not getting things done.I think drinking a lot helps...Does anyone else find that?
Depends what you drink, Osprey LOL.
It's only a tablet... so is ecstasy... So, so true. Do they not mind if their airline pilot had taken ecstasy? Do they not care if their surgeon had had the equivalent of five double vodkas? Those of us with responsibilities to others, whether at work at home, or just on the street, and that's pretty much all of us, we do need to get a balance:
There is more to life than just avoiding cancer!
OF COURSE the docs and oncologists want you to have what they think is their best for your condition, that's their job, but really, if you were driving their bus home this evening?? If you were looking after their child? "I'm sorry I threw the baby out the window, your honour, you see i'm taking this little tablet and it makes me feel pants..." that's not going to cut much ice. Might keep you out of prison, diminished responsibility and all that, but it won't bring the baby back, or un-crash the car, etc. If you drink then don't drive, if you drive then don't drink: simples. If you have responsibilities that you can't delegate, like being a single parent, then you have to stay able to think, whatever the cost to your physical health.
Well, I think its about balancing the risk and quality of life...apparently there is a test whereby they put your details into the computer to determine the extra benefit tamoxifen gives you as opposed to not taking it..i.e assuming you have an 80% survival rate taking the tamoxifen could give you an extra 10%, is it worth the extra 10% to feel depressed and miserable (in my case), lowered qulaity of life equals lowered immune system and less likely to fight the disease if it rears its ugly head again in the future...just my opinion....
thats an interesting way of looking at it baby4 I didn't know about the percentage theory, seeing my onc next week for final check up will ask him then thanks for the tip
Hello Ladies,
Thank you so much for your comments. Funnily enough as soon as I went to the GP, the fuzzy head went!
She has ordered some blood tests, so we shall see!
Hope all of you suffering SEs from tamoxifen get the help you need soon, it sure is a long journey with diversions for all of us!
Dotty2 xx
hi all
been reading all your comments. havent started tamoxifen yet but am supposed to soon . bearing in mind i had every side effect going when i had chemo,is there a connection to this and SE of tamoxifen? All scary stuff.
My heads' been fuzzy since 1970, and i used to stare into space at school also, so no hope for me lol
thanks yvonne xxx
Hi Dotty!
Dont come on much these day! try and stay to fb! but saw your name and just wanted to say hi!
Hope the fuzzy head soon sorts itself out!
And the blood tests are ok/
Keep Well
Sandra xxx
Gardenparty if you have been living in that fog for forty years you will probably be fine with tamoxifen as you clearly have excellent life-coping skills and a massive amount of post-its (or a superbly protective backup team!) I totally admire your perseverance, i quit at four months!