HI Rattles - I just found this thread while looking for something on arimidex and muscle/joint pains (Side Effect of the Month) but I had this dizziness problem at the end of last year. Freaked me out. Immediately diagnosed myself with a brain tumour and/or incipient dementia (my dad died multi infarct dementia which starts with mini strokes/TIAs).
I had lumpectomy/WLE in Oct 2011 and 3 weeks of radio in Jan 2012, and have been on Arimidex/Anastrazole ever since. Dizziness isn't listed on my tablet packets as a side effect but it does appear on some drug information sites and obviously lots of women are reporting it. I had a brain scan, no tumour, then was put on Allervert for dizziness, but I never really took it becuase I was also prescribed Gabapentin to prevent headaches and I didn't fancy all those drugs merrily interacting in my system.
The dizziness went away by itself, does still appear occasionally but it's manageable. Still don't know for sure what causes them but there may be a link to your headaches as I have had occasional migraines and daily headaches (caused by painkillers!) for years. I think in my case it's probably wear and tear on the brain from all those headaches, plus Arimidex. For me it's manageable at the mo, but it's really scary when it happens. If there's a headache clinic near you, it might be worth asking your GP to refer you, that's what fixed my daily headaches after 10 years of weeping in the GP's office.
Of course you're "anxious" - you've had cancer and you're still working!
I hope you get it sorted
I'm glad you are at least being offered some help with the physio but disappointed to hear it could take up to 12 months to recover!
I seem to have gotten worse over the last week and it's really restricting what I do now, although on a positive note, I did get a lot of blood test results back which were normal, so some relief there at last. Still, returning to work has gone out of the window as this nystagmus is affecting my vision, making it blur sometimes and so I haven't been able to drive for a few months and have difficulty focusing on detail, such as computer work etc.
Time drags when you're waiting for appointments and it's still nearly 3 weeks until I see the ENT specialist. I'm assuming it will be just an initial consultation and I'll have to wait again for either more testing or referral for vestibular rehabilitation therapy if that's what they think I need and goodness knows how long that will take.
It is terrible to have to wait so long. I really feel for you. I have just returned to work after surgery in April and I am feeling really stressed as I have had so much time off sick and really, I would just love to be off sick for a week, but feel I can't.
Anyway, I had my assessment. I have some mild hearing loss and 40 per cent balance deficit on the right. I will be referred for physiotherapy and hopefully will see improvements over 6-12 months (gulp). Really disaapointingly, the doctor I saw said she thought there was an underlying problem to this - migraine which she attributed to menopause and the oestrogen I started taking after having my ovaries removed in April (my breast cancers were both triple negative). She definately did not reccomend stopping but I feel a bit caught between a rock and a hard place and will need to go and talk to someone (though unsure who?!)
Its all a bit pants feeling like you have to deal with these side-effects on your own. And work, be a mum, try and live life to the full etc
Ukelele- sorry you are feeling rough too.
I finished treatment in January and my brain certainly doesn't seem back in gear. The tiredness hit me again over the past few weeks and lots of resting didn't seem to help. Now I am trying to cut back work and other commitments as far as possible and concentrate on a healthy lifestyle including spending time on mindfullness.
It sounds as though you aren't yet sure what the treatment/intervention will be?
I saw my oncologist today and he was sympathetic (though unfortunately and dispirtingly he talked about my risk of developing brain mets) and thought that vestibular rehabilitation was a very good plan though it sounds as though it won't be a 'quick fix.'
I have my assessment appointment next week.
Keep in touch on your progress and how you are feeling.
Shellebelle, am sorry you have this problem to deal with, but it sounds as though it is a relief to actually know what you are dealing with instead of being told it is anxiety-related!
I hope you can let me know how you get on.
I saw the Neurologist who is referring me for assessment at a vestibular clinic. He said it is common to have these sort of symptoms and seemed reluctant to give a view on causes, but like you I can't help feeling it is something to do with chemo and I might use the 'ask the nurse' service to enquire about any evidence to support this.
I am feeling a bit low today - just feeling that I am worn out and asking myself whether this is as good as it gts? I just want to feel 'well.'
Take care too. Rattles
I have recently been to a 'dizzy' clinic and had tests which showed I am suffering with nystagmus. Some kind of vestibular imbalance and it may well be as a result of damage from chemotherapy to the vestibular system. I didn't get much from the clinic visit, other than confirmation I am dizzy and that it is possible to recover eventually depending on what has caused the problem initially. I have to go back to see my own GP on Tuesday so she can decide what to do next.
I'm just thankful that finally, after all these months of being told I'm just suffering from anxiety and to stop worrying, that someone has actually confirmed it isn't all just in my mind!
I hope you find some answers with the neurologist. Maybe that's where I'll be heading next?
Sorry to hear you have been so unwell too. I wonder if it is just exhaustion? I think it is easy to overlook everything we have been through and it takes a long time for the body to recover. I was treated fro breast cancer twice and the first time, the treating team said it would take a year to get over the treatment but I was still noticing improvements 18 months afterwards.
Clearly I need to give the same advice to myself (!) but I have a young family and I am the main breadwinner in our household so imagine when after nearly a year off work (for the seond time) so it is not easy, even though I am so glad to be alive.
I thought I would post an update. I had an MRI scan last week. I really thought it was secondary breast cancer because by the time I had the scan, the symptoms had worsened and it has been good to see that when I first posted, I was only concerned about light headedness as I went on to develop vertigo, the room literally spins if I am not very careful. I feel unbalanced and drunk and then get a bad headache and nausea. I have now worked out how to manage these symptoms better and that computer work, reading, travellling all make it worse.
Shellebelle I have now been referred to a neurologist. No one very keen and really had to push. I think one of my fears is that the chemotherapy I had has damaged the nerve endings in my inner ear. I have now come across a few people who have had labyrinthitis and all say it was one of the worst illnesses they had (they haven't had cancer!). I think I am coping better emotionally now I know it is not cancer-related and it is a reminder that it is not only cancer that makes you feel unwell.
What about going to the Penny Brohn Centre? I have not been there myself but have had some good reports. from others. Or, one of the Breast Cancer Care Moving Forward sessions? It is still very early days for you.
I was DX Oct 2012, had MX in Nov, followed by chemo and rads and am now on Tamoxifen. Since the end of rads in June I've been suffering with a dizzy/wobbly/swaying sensation continuously. I've had blood tests, CT scan, MRI scan, eye test, neurological tests , also tried meds for inner ear problems which didn't help and taken a break from Tamoxifen to see if that was the cause. Tests were clear and I didn't feel any less dizzy not taking the Tamoxifen, although I do think it contributes to headaches, fuzzy heavy head and other things, but I'm back on it. Anyway, as my oncologist couldn't find anything 'life threatening' she has referred me back to my GP.
The dizzy/swaying/wobbly sensation is awful. It feels quite strong and makes me feel a bit disjointed when I walk too. I've even had my husband check whilst I stand still/walk to make sure I wasn't physically rocking. I haven't felt confident to drive and have struggled just going out shopping sometimes.
Because tests have not shown anything in particular that might be causing my problem, my GP thinks it is probably anxiety related and wants to prescribe anti depressants, which I'm loathe to take so am holding off on that for now.
I've made the decision to go back to work next month, part time only, and am hoping that by getting back some normality in my life, after being off work for almost a year, I'll stop focusing on my health worries and in turn start to feel better....well that's the plan anyway!
I do feel a bit like I've just been left to get on with it by myself now though.
I was interested in reading this thread because since finishing treatment in January I have been waiting to be rid of what I can only describe as feeling slightly "spaced out" all the time. It's akin to feeling very jetlagged or perhaps having a very slight hangover. I finished herceptin in July and am now on Tamoxifen - am wondering whether it could be the Tamoxifen . When I mentioned it to my BCN she suggested I see a counsellor but I know my body and I know this is not related to anxiety. No-one has been able to give me a satisfactory explanation and I do sometimes wonder whether I'll ever feel quite right again.
Thanks to you for your posts. I had not managed to get on the forum for a week.
After a terrible headache at the weekend I went back to my GP who took blood tests and I go back today. I had thought my symptoms might be due to my eye-sight but she said what I was describing sounded more like symptoms of labyrnthitis (which I can't spell!) and said that if the blood tests revealed no issues they would want to scan my brain. I will find out for sure this pm and have been very stressed and anxious- not helping my symptoms!
I completely agree with everything you all say about the treatment and the long term effects and I think initially I did put my symptoms down to tiredness. What is so hard is just that sense that I no longer know my body, I no longer know what is normal, no longer able to tell even if a headache is due to eye-strain or something much more sinister. I really hate that cancer can de-rail us so suddenly back into that world of fear and uncertainty.
I am not on letrozole as I had a triple negative breast cancer. It is interesting to have a doctor's perspective.
Hello, Rattles. I finished chemo eighteen months ago, and unfortunately also needed a major repair to my bowel and bladder, and a full hysterectomy, caused by damage to my healthy tissue by the chemo, eight months later.
I cannot tell you how it took the 'stuffing' out of me, and the light headedness and general debility is something I have only recently got through.
I am on Letrozole, which really did not help matters, and in the early days I would periodically start vomitting, followed by the feeling of fainting off, and my only option would be to lie down and sleep for a couple of hours until I felt better.
During those episodes, I was barely able to speak, I would feel so unbelievably ill.
Luckily, these really traumatic episodes gradually passed, but I still occasionally get a wave of heat which encompasses my whole body [no sweating], nausea and dizziness.
I think our bodies go through so much, that we expect far too much, too soon. Getting over treatment is a long, hard road, and others look at us, think you look 'normal', and really do not understand what is actually going on underneath!! I would think that your light-headedness will eventually pass, but it could take a while. All the best.
hi, quite apart from anything else, it is normal to be anxious. If my little finger aches, within 5 minutes, I realise that I have bony metastases and am planning my funeral.
Are you taking letrazole/tamoxifen? I know letrazole can cause lightheadedness. When I was younger, I had leukaemia and looking back, it took me at least 2 years to return to anything like normal fitness. I know I expect too much off myself and should probably give my poor body a bit more empathy after the knocking about it has taken. When you get to look pretty much normal on the outside , many people assume you are fine again.
I was talking to my surgeon today about my plans for returning to work. She was in total agreement with me that I should wait until after my reconstruction and focus on building up my health. She was basically validating the fact that recovery is a long and slow process.
What I am trying to say is that all manner of symptoms will rear their heads, some will need treatment and some wont but we would be fools to ignore them after the seriousness of what we have been through. I know I need a way to keep a bit of a rein on my anxiety and imagination but equally I need to hear what my body is telling me.
Your GP is there as much to guide you through these months as the chemo. He/she is paid to see patients. I say this because in my "real life", I am a doctor myself and always try to get my patients to see that they are not troubling me by contacting me- that is why I go to work.
If you are worried by symptoms go and see your GP. Stressing about them is not good for your health so please look after yourself.
I did reply to this earlier but it seems to have disappeared.
Got to hospital yesterday, they told me my appointment was next week but my card said 2nd so they saw me. Unfortunately I was seen by the professor who was totally disinterested as he is used to dealing with patients with complications/secondaries (interesting stuff). He told me I was the healthiest looking person he had seen in a long time, that my bone density scan showed no signs of osteoporosis, unusual for someone my age and and with a fair complexion, so of course by the end i'm feeling like a hypochondriac. He just shrugged his shoulders when I told him about the giddiness but after 2 min discussion he decided to send me for a CT scan (might just have been to shut me up but I don't care, he's not the one staggering about). So back to the waiting game, next appointment at the end of the month so I assume I will have had scan by then.
Sorry no further help to you.
Sorry that you too are feeling this effect, although it is reassuring not to be on my own. I don't really want to go back to my oncologist so would be interested to hear how you get on. I just don't think I could face having more tests at all but at the same time it is hard not to worry.
I finished treatment, mx, anc, chemo and rads at the end of last year. I am having much the same problem as you, feel as if I've been taking strong drink! Getting up in the morning I have to sit on the edge of the bed for 5 min, when I'm sitting I have to get up slowly or I stagger like a drunk, and I didn't even have the pleasure of the whisky. I'm OK while sitting down and driving it's mainly changing posture when I have problems although I occasionally get the lightheaded bit while just moving about.
I suffered from this years ago. Saw one GP who told me I was travel sick even though I had been back from holidays for a good couple of months. Saw another who sent me for an x-ray and they decided it was arthritis in my neck, and to be honest when I move my head slowly I can hear my neck crunching, sounds awful I know but it's not painful. I am on arimidex so was wondering if that had anything to do with it.
This only started last week and as I have an appointment with oncologist on Monday I haven't bothered seeing my useless GP yet, but if I get no sense from onc then I will speak to GP.
I have a sneaky feeling that they will put the dizziness down to stress as my OH died suddenly last month, but I don't think it's stress. I am a bit breathless, not sure about bloods but this will probably be checked on Monday.
Hope things improve for you. I will let you know what onc says about this.
While you are waiting for replies from your fellow forum users, could I suggest you give the helpline team here a ring and have a chat with them, they're here to support you. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2
I am wondering whether anyone suffers/suffered from light-headness/dizziness following any of their treatment? I finished my treatment last year but had another op in April. I have had a long old haul so I try to be realistic about my health. Over the loast few weeks, I have been feeling very light-headed. I suffer a whole range of aches and issues which I am used to, as well as fatigue, which I think I tolerate. This new symptom is really making me feel anxious and I wondered f anyone else had a similar experience?
I am not breathless and my bloods have recently been okay so I don't think I am anaemic.I had my eyes tested recently and my eye-sight has deteriorated so I blamed this for a while, but I am not so sure now as I just feel strange. I am prone to headaches and this is nothing new. The only factor is that I have been extremely tired due to over-doing it at work, but even though I cut-back on my committments over the last week, there is no change and I feel as if I have been over-doing it on the vin rouge (which I am not!.
I am going to go and see GP next week but I think he is just going to see me as 'anxious.'
Be good to have your thoughts/advice.