vertigo and/or disequlibrium symptoms while on tamoxifen

cwired,

I was initially on tamoxifen for 11 months, no dizziness BARR brand, then my ONC put me on femara....I experience alot on that drug including the disequilibrium. My head felt stuffy and I was uneven when I got up from sitting. Due to many debilitating side effects I was taken off femara and put onto tamoxifen TEVA brand. About 6 weeks into the tamo I got a really stuffed ear feeling in my right ear that persisted, I even had lots of ringing in my ear. I was only taking 10 mg at the time as I was going to work up to the 20mg slowly. Well because I was having this issue I never did make to the 20 mg mark. After about 5 months my ONC put me on a tamox vacation. I was off it for 10 weeks. It took about 8 weeks for me to notice any kind of improvement from my side effects.By the time I took the tamox vacation I had been on either tamox or femara for a total of 31 months.

 I went back on tamox 5 mg this time.  It has been 2 months now and I have started to get the disequilibrium back (not as bad though). I tried to increase the dosage to 10mg and got terrible leg cramps (again) and the dizziness increased, so I am doing 5 mg. For me this is better than nothing which by the way I am thinking of doing.

My opinion for what it is worth, is that just like the chemo had a cumulative effect the more treatments we had (tear down cells, body has 3 weeks to rebuild, then tear down cells again, body takes longer to rebuild, etc) I think that the tamox has a cumulative effect on our bodies and they just don't get a chance to repair themselves cuz we keep hitting them daily with the drug.

Hang in there you should see some improvement soon. I think the longer you are on the drug the longer it takes for the side effects to subside. 

bump

not from tamox.....i had been on tamox for 5 yrs and did not experience vertigo....had vertigo only after I had broke ny nose....sinus infections that interreacted with my ear, causeing my imbalanceness....the treatments help me or excercises they give you while this occurs, but brings it on more....you have to force the imbalanceness back to its original.....stay away from salt....as I know that is a big factor in getting the spins...also use a cold rag on your face or neck when you get nausea...keeps swelling down and suck on pepermint   also kep music listening at a low...loud noises also annoy the inner ear

I suffered with vertigo 10 years I was referred to mr monksfield at the QE hospital Birmingham I'd tried tablets but they didn't seem to work in the end saw me monksfield he mentioned a gentamiacine injection in the ear drum that didn't seem to work the next thing he suggested was a grommet that was just over 3 years ago not been dizzy since but had to have grommet removed as had ear infection been alright up till this week got a bad ear infection so had vertigo again need to get sorted before radiotherapy starts

kopperberg- what's a grommet?

I' m a 5 year survivor of triple negative BC, so I've never been on tamoxifen, etc. I did have dose dense ACT chemo followed by rads. I had acute vertigo 2 years post treatment that landed me in the ICU for 3 days. Then 3 years later I had another acute vertigo attack with 4 days of hospitalization. Both times all brain CT and MRIs were negative. After the second attack, it took me about 6 weeks to walk without a walker. I still don't feel totally normal. Dx was acute vestibular neuritis. I never had ear problems or vertigo before BC treatment. Since I was never on tamoxifen, etc., I suspect the chemo permanently compromised my immune system and or damaged the nerves in my inner ear, making me prone to vertigo. I found a 2005 NIH study that mentioned that BC patients report what appears to be a higher incidence of vertigo. Vertigo may be a latent effect of chemo.

Susanella, NY

Yes Peggy. I posted a reply on 8/16/17.

Spostma---I experienced nausea and dizziness and ringing in my ears that didn't start till about a year into Tamoxifen. I spent another year trying to figure out what the problem was. I tracked all my symptoms and saw ENTs who thought allergies (which I'd never had and still don't). Finally one day in mentioning this to my BS he told me that alot of his patients complain about this on Tamoxifen and he did some research and found that it's very dehydrating. So then you get all the symptoms of dehydration...like nausea and dizziness. So I upped my water intake a lot and added a really good probiotic which he said would help my stomach and haven't had the problems since. Maybe this would work for you.