Has anyone experienced really bad balance problems on Examestane? I was on Letrozol for many years without issue then changes to Extramestane last year. I have been experiencing balance issues and have been tested for mini stroke, brain tumour etc. I had a really bad fall in late December and it continues to get worse. I am walking with two canes now.
It occurred to me this morning that it began sometime after I started in the new drug.
Has anyone else had balance issues, with or without Examestane?
I lose balance if I am in a slope, if it is dark, if I tu4n my head or if anyrthing moves near me.
I am on a trial of Vertigo medicine but it’s too early for results yet.
I’m not in your situation but I suffered a bad bout if labyrinthitis many years ago which resulted in bouts of vertigo for years and actually I woke up with it yesterday though it was gone by the end of the day. You have my sincere sympathy - it can be a miserable debilitating condition as it obviously is for you now.
I was helped by an Osteopath who as well as treating problems to do with the infection found an underlying issue with my neck that I wasn’t aware of and after a couple of manipulations there was a big improvement. As you have been on AIs for some years it’s possible that your neck may have been affected in some way and might be worth getting checked out.
My first Yoga teacher used to say " make sure your weight is evenly distributed between your heels and your toes " . This stopped me from pitching headfirst down an escalator once - I was at the top and couldn’t work out if I was standing upright , I realised I was leaning forwards because I could feel that all my weight was on my toes and was then able to correct it. Concentrating on keeping your weight evenly distributed when this is something you would normally do automatically is wearing but at least I didn’t fall over.
I was also given some exercises by the Vertigo Society which helped as did gentle Yoga when I was getting better . Later Physio exercises I was given for a different neck problem helped. I took ginger capsules and fresh root ginger to help with nausea as the medication made me feel dopey though I continued to take it at night for a long time.
I can’t help wondering why you have been changed to Exemestane if you were ok on Letrozole and if you are unsure as to why you have been changed then I would suggest going back to your Oncologist.
I’m not sure how long you have been on Exemestane but if it’s less than 6 months they might want you to give it until then to see if your body adjusts . Perhaps try another brand as the additives / preservatives different firms use can cause or exacerbate side effects .
I really hope that you get some improvement and quickly
Thank you Joanne for your very insightful reply. I was switched to Extamestane because I had developed a new tumour inky in the breast. My oncology team thought it worth just changing the AI because the other meds appear to be still working well.
I read the part where you were at the top of the escalator, this is the issue I have. I cannot identify i am balanced or not, so just stand feet apart until I feel I’ve got it right. It’s generally when .im on a slope or a step. I will try what you suggest about feeling where my weight is.
It doesn’t help that I have peripheral neuropathy which sometimes makes my feet ‘misread’ the surface. Hot, cold, sharp, dull etc.
I must look odd and people do offer to help me, which is kind.
I cannot turn my head to check if vehicles are coming when .i want to cross the road.
I am creating a list of all the little symptoms that may help my GP figure this out.
I remember not being able to turn my head and having to turn my whole body jnstead . Slopes even very gentle ones or uneven floors used to set me off too.
A lot of the exercises I did were to practice head movement and to put my head in a position to make sure that the fluid in the semi circular canals is circulating properly . Having my head stuck in one position just made it worse . After I’d exercised my head / neck then I would have to sit still or lay down for a while to recover . My Osteopath also did cranio- sacral work on me to get my cerebro spinal fluid circulating properly ( I think the infection left some debris in my left inner ear ).
I’m not sure this will help you though as your symptoms sound to be drug related . It must be doubly hard with the peripheral neuropathy as well . I had a vision problem a few years ago and can remember how scary it was crossing the road and how easily I got disorientated . At least your sticks should give oncoming vehicles a visual clue that you can’t move quickly .
Thank you JoanneN, I am far from certain that it’s drug related but thinking of everything possible. What was the name of the condition you had? I cannot turn my head but have to rotate my body. Even stepping up or down a curb, or a very minor slope on the ground.
My head doesn’t spin and I don’t feel lightheaded, it’s just like I cannot find my centre of balance. I’m trying the suggestion the other lady posted about checking my balance is between my toes and heels.
My GP did check my ears and said the left one was inflamed and I’m taking drops for that, but so far no change to my balance.
I found an online physiotherapist on YouTube who shows balance exercises for seniors and I am trying those but noticing that it’s hurting my hip. I have stopped for now until I have that checked with my GP.
Thank you again for this information, it does sound very similar to what I’m experiencing.
I had labyrinthitis - inflammation / infection of the inner ear . Many people get over it after a few weeks but I had it for about 6 months with some residual symptoms for a long time which became worse when I got a cold or sinus infection. Two other women I work with also had it quite badly . As well as feeling dizzy/ everything spinning / feeling sick it affected my blood pressure and heart rate and I had a weakness in both legs which was worse on the left which would kick in after walking a certain distance. I kept walking though 20 minutes 4 times a week and I also ended up with a painful hip as I seemed to list to the right after walking a while. I had never really been ill before when I had it and it was very scary.
I was having a difficult time emotionally as well and eventually saw a counsellor via work who diagnosed me as suffering with burnout . Along with the Osteopathy that really seemed to help - might perhaps help you too . I had to modify the exercises I was given because it hurt my neck trying to do them as recommended but I did get some benefit from those as well.
You should definitely get speak to your GP again but also your treatment team need to know that you’re struggling with this .
I’m not really in your situation, but thought I’d reply as I have experienced a form of mild dizziness (not vertigo) and sense of being off balance since my MX surgery last year. After 3 visits to see my GP who conducted basic balance tests and various blood tests all normal, a visit to A&E where a Head CT (normal) was done, I requested a referral to see a neurologist who then requested a MRI (normal), & thereafter a number of vestibular function tests (normal). Even though all tests came back normal, I was referred to have some vestibular physiotherapy, from which I experienced gradual improvement in my symptoms over a 2-3 month period, but am at the moment awaiting a further review as the progress I made appears to be reversing for no apparent reason. My eyes feel extremely tired, with visually stimulated environments very difficult.
Anyway thought I’d share, in case some of the above particularly the vestibular function testing (it was a suite of tests done by an vestibular audiologist, & took approximately an hour where my ears were checked, hearing tested, various gadgets such as eye goggles and headsets used for testing my vestibular system with various head manoeuvres) is something that they would consider doing for you if the change in AI medication (letrozole to extamestane) isn’t the cause of your current balance problem. I do remember that when I first started letrozole I felt that the sense of dizziness I initially felt was heightened - but this soon normalised within about 3 weeks time.
Just want to add though that there are many different vestibular balance/dizziness conditions so the remedy for each can be quite different depending on the cause for it. I do know how difficult it is living with a sense of being off balance and dizzy, so can empathise with you and hope you are able to get the help you need. I too kept a diary of symptoms & also tried to identify triggers (head movements/standing/walking/turning vs lying down/sitting etc…) as I had to explain how I was feeling at each appointment I went to, so its good that you are creating a list yourself.
Thank you so much for this information. I hadn’t considered that it could be related to my MX which occurs st the same time as I switched AI. I’ll add that to my list.
So far the only tests that have come back other than normal are iron, so .I’m taking it now and a single unusual ECG test.
I am very interested in your vestibular tests, I will take a note of this too.
I was starting to be concerned that the GP would think I’m a hypochondriac. It sounds like they eventually found something for you so it’s worth me pushing for more tests.
I’m sorry to hear that your progress is starting to reverse, do you have any idea why?
Wishing you all the best to regain your improvement.
Xx