vertigo and/or disequlibrium symptoms while on tamoxifen
Have you had problems with vertigo and/or disequilibrium while on tamoxifen? Any way to reduce this?
A few weeks ago I woke up on a Saturday and felt weird whenever I stood up and/or walked around. (in my case, when I walked it felt like it took a couple extra seconds for my brain to catch up to where I was) I thought it was vertigo but after an exam the doctor at Urgent Care said it was disequilibrium caused by something in the inner ear.(he said vertigo is the feeling that the room is spinning when you are sitting/standing still). A few days before I'd had cold symptoms so he thought it was related to that. i.e. a virus in the inner ear. The symptoms lasted the whole day; the next day I felt fine. He thought it was unrelated to tamoxifen and BC, but I'm wondering if anyone had similar symptoms. I've had colds and stuffed up ears many times in my life (I'm very prone to ear infections) but never had these symptoms. The last couple weeks I've had very short-term episodes where I felt a very very mild case of disequilibrium, not sure if this "virus" is still in my ear canal or if this is a SE of tamox.
Comments
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I've had dizziness so bad on a couple of occassions prior to BC. I couldn't walk let alone drive. I was told it was my "inner ear" related to a virus. I couldn't turn my head without the room spinning. An ENT told me that I am proned to this & each time it happens it will be worse(last time 15yrs ago). I had one episode 2wks following the birth of my dtr, so maybe there is a homone component.
On tamoxifen, I've been dizzy & have fallen twice. Once while hiking & once while playing basketball. I don't usually fall. Also have headaches. I've only been on tamox for about 10 weeks & I think my dizziness is lessening. It was never as bad as my inner ear preBC episodes.
IMO, your symptoms might/might not be related to tamox.
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I have suffered from vertigo for years and years now. I have actually passed out waiting to be admitted into the hospital and shuffled off unconcious to the er before being admitted. In fact, after that, when I get bad attacks, I have to go by ambulance.
Vertigo is awful, the room spins, I vomit, the room spins, did I say it's awful? Then I have a recovery period even after the episodes end (although now I have it chronically).
The best medicine I have found is meclizine for mild attacks plus an anti-nauseous med. For worse attacks, I take valium plus anti-nauseous meds. When it gets beyond that, it's the hospital and iv's. I had a terrible ear infection right after my son was born and they say it could have been caused by that, but they aren't sure.
So my vertigo has never gone away, although I notice my severe attacks are few and far between, but never leaves.
There is also vestibular therapy if you have it chronically. It didn't work for me. While I was hospitalized while visiting my brother's a few years ago, they hospital there used me as a guinea pig for a therapy where they put goggles on me and made my spins worse. This was supposed to "cure" me. I feel like an idiot for letting do that to me since it did NOT work. They were claiming an almost perfect "cure" rate. Bunch of b.s. to me.
Good luck with your vertigo. It's not a fun thing to have.
P.S. I f you are having an attack, try to stay cooler as well. Your body can sort of heat up with attacks. Some very nice emt's told me that.
I was told that basically there is a balance system in the inner ear. When vertigo attacks, that balance system, the eyes, and brain do not communicate normally, causing the spinning.
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Just yesterday morning, and again last night, I had an episode of vertigo. They were both short-lived, but the one last night was fairly intense. I have been on tamox for 10 months now, and this has not happened before. I am not prone to vertigo or ear problems. I did have an ooph in September, so I don't know if the sudden menopause has something to do with it or not. It was rather unnerving. If it starts to occur on a regular basis, I'll be calling my MO about it.
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Thanks everyone for sharing your experience. Good to know I'm not alone. As an FYI, I flew last week and had slight "disequilibrium" issues the next day (so my symptoms may be related to the inner ear. Tamox and the inner ear? who knows?). Anyway, since I have a history of blocked up ears I've been using my trusty remedies. I've been taking a half-dose of guaifenisin 2-3 times a day and it seems to help. (recommended years ago by a doc to keep the mucus running and keep my ears from blocking up). The ingredient is in some cough medicines but I buy the generic pill and split it in half. Also, the doc who saw me a few weeks ago for my disequilibrium symptoms suggested I "pop" my ears several times a day (pinch your nose and blow). These things seems to be helping so just an FYI in case it helps anyone else. (I plan to discuss this with my MO next month and I'll post if she says anything interesting.)
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I guess I'm not sure how to tell dizziness from vertigo from disequilibrium. I saw a new MO today & she didn't think it was due to the tamox. Huh!!!!! It started when I started my Tamox & has been variable since. I've had episodes inner ear related dizziness in the past but not in the last 15 yrs & they went away after 3-5days.
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Peggy, I know *exactly* what you're talking about, and thank you for describing the feeling so eloquently - I have had trouble describing what it feels like to my doctors...not exactly dizziness or vertigo (which I had during A/C - terrible!) but yes, the head moves and the inside of the head "catches up" is a great description of a symptom I have! Disequilibrium. Now I have a word for it, thank you!
Curious to know how long you have been on Tamox. You may also want to check out the Tamoxifen Neurologic symtoms thread, a lot of interesting related info on there. Hope you are feeling back to normal soon!
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Hmmmm. . . I seem to have this,too, but I'm on femara. I wonder if it is the meds or the menopause?
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I have one of the worst cases of this. I was on tamoxifen for 7 months and then this started. I have been off of the tamoxifen for 7 weeks. It took me 6 weeks for the feeling/dizziness to go away! I really think it may be the tamoxifen. I go back to my MO in 2 weeks and we will go from there.
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Vertigo obviously has some connection to hormone treatments as it is a well documented side effect off of HRT (Hormone Replacement Therapy) Livial, (Tibolene 2.5mgm estrogen ). (You are advised to come of Livial immediately after experiencing dizziness, vertigo or fainting spells) When on Livial about 10 yrs ago for osteoporosis, after about 6 mths I has severe Veritigo at work and was unable to walk or drive. The GP immediately took me off Livial and with 24 hrs the vertigo had gone. I then stopped HRT being at the end of the 5 yr treatment period. While Tamoxifen blocks the estrogen receptors in breast tissue to me it still seems to be playing around with our hormones.
With Tamoxifen it took me about 4 mths to settle down, initially I had anxiety attacks, considerable weepiness and some dizziness, not actual awful vertigo but apart from pins & needles in my arms & legs now it is very much improved.
Blessings Patricia
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BlueCowgirl, I started tamox in mid-July and these episodes began 6 months later (almost to the day). A few days before the disequilibrium I felt like I was coming down with a cold but I rested, took vitamin C etc, and a full-blown cold was avoided. My ears were partially but not completely blocked (I've had worse in my life and never had this problem). Since the symptoms returned again after the flight I'm wondering if it's a ear+tamox combo thing. i.e. tamox is mucking with my inner ear and now when I get colds (a virus, ear blockage, etc) I may have these problems. (?) This makes me wonder if anyone doing scuba has related problems (I haven't done scuba in years). Thanks everyone for sharing your info. I'm planning to do some research on PubMed prior to my MO appt but haven't had the chance yet. (has anyone else researched this link?)
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I have dizziness a couple of times a week since I've been on Tamoxifen. I started it in Aug 2010. In Aug 2011 my onc switched me to Aromasin because the chemo treatments put into menopaus. No dizziness on hte Aromasin, but my joints hurt so bad, I couldn't stand it. Especially my hands and ankels. They would swell real bad too. I was only on it for a month. My onc put me back on Tamoxifen. I prefer the few dizzy spells I get as to all the pain. It's still comforting to know that others have dizzy spells too. Not that I want any of you to have dizzy spells
It still gives me an anxious moment or two when I have one. -
bump
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Hello, fellow spinners! I came here looking for information on Tamoxifen causing dizziness/lightheadedness. I've been on Tamoxifen (Teva) since June 2010 after chemo ended. Although I've had slight lightheadedness for a few years, the past week it's been getting worse. It's not vertigo, which I had a few years ago. It's more of a weird, part lightheadedness and part dizziness. It isn't constant, but when it hits, it's like a wave going over me. In fact, I was fine today in a 1 1/2 hour yoga class, but after I got home, I had another spell.
I'm wondering if the Tamoxifen could be to blame or if it's something else. I had an upper respiratory infection all of December but thought the antibiotics had cleared that up. I do seem to have some post-nasal drip still, yuck. Also had an increase in Synthroid over the past month and thought maybe I was going hyper, but a blood test this week shows my thyroid levels are good.
Could it take Tamoxifen a year and a half to cause problems? I'm about to try a change in manufacturer going to Mylan because of an insurance change, so I'm hoping that will help. Any thoughts will be greatly appreciated!
Cindy
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CinD, I discussed my symptoms with my MO at my regular appt a couple of weeks ago. My MO said that it's rare for patients on tamox to have these problems, but it has been reported (her comment is that it's unknown whether it's a correlation or causality). Anyway, since my symptoms were off-and-on, she suggested that if they appear again to see an ear-nose-throat doc. In my case, my first bout of symptoms appeared after I had headcold symptoms and the urgent care doc thought it was a virus in my inner ear. (I have a tendency to have ear problems) It may sound like my MO is passing the buck but it seems reasonable to me to get an opinion of a ENT. FWIW, I know two men (not on tamoxifen, obviously) who had a sudden onset of an inner ear virus that caused permanent damage.
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To all members of the spinners club:
I've had vertigo well b/4 cancer a couple of times per year. Meclizine HCI as mentioned is great and has worked for me. It's over the counter. When I get it, I start taking this for a week or two. Someone told me it was water in the ear drum. I also sometimes put a drop of alcohol in my ear to dry up any moisture. If SE's don't go away, you should check with your onc.
Terri
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Peggy_j and Terri, thanks for the information. I tend to think mine may be sinus or allergy related since I'm in Florida where everything is always green and blooming. Last year I was going to get referred to an ENT since my doctors could find nothing, but I never followed through. You just get tired of the doctor parade sometimes! I see my oncologist this March and will bring it up if it's still happening. I always hate to bring things up to my onc but know it has to be done. I still have some Meclizine pills from my bouts with vertigo so may give them a try again. But I'm thinking it's not the Tamoxifen.
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Spinners club, I like that! I don't have the vertigo problem, but I read yesterday on one of these boards that a woman with Tamox-related vertigo cut her sea-sickness patch in quarters and used one quarter of it. Apparently that helped.
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Joining in here. I had a severe case of vertigo(vomiting & spins) that left me incapacitated for over 4 days this past August. 2 weeks earlier I began aromasin & had my 1st lupron injection. I called my MO & the covering MO said I should see my PCP to r/o an inner ear problem. Next day I go & of course no problems there so he orders a MRI of my head. I Call my real MO & he agrees to have the MRI. Same day I get the appointment & hubby drives me there.(PS- it's our anniversary.... Nice way to spend the day....but that's the way the year had be going....) all of a sudden a light bulb goes off & we say WTF!!, I can't get an MRI, I have TE's!!!! So now the technician, hubby & I are standing there in disbelief that TWO doctors ordered it. Fixed that with a change in order to a ct scan and it was negative. So now what???? MO thinks it may be the aromasin so I stop it & was switched to femera. November I have my 2nd lupron injection and about 10 days later I have just a bit of vertigo for a few days. I never called him because it was manageable. Now I'm scheduled for my visit to MO & for my next injection 2/15.
I'm nervous about my next injection although it did get better. Just wanted to share my story with vertigo. -
I was taken off Tamox for dizziness & told to restart it 1 week later at 1/2dose(10mg). I've been on the lower dose for just over a week. My allergies flaired up when I went hiking a couple of days ago(it's warm & sunny here). My ears are very stuffed up & I'm taking sudafed & trying to clear them. No dizziness though. Just not sure I'm doing myself any good by taking the lower dose. I'm trying to convince myself that the lower dose might be enough for me because I only weigh 100lbs. MO said that 10mg can be therapuetic for some women. Also talked of switching me to Fareston which is much more expensive. I read in another thread $800/mo, no generic available. Not sure how much my insurance will help me if that happens...... I'm hoping I can get back up to 20mg, maybe I should try 15mg 1st.....
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To Peggy_i: similar to me with Tamox. I had a very strong vertigo starting from 3rd month of taking tamox, then a very strong headache everyday, and finally blocked ears, mainly the left. After stopping tamox in September the vertogo reduced and almost stopped (it happens periodically, now very rare, which scares me, but brain scan was OK), headache from everyday's switched to once a week or no one(when taking naproxen). An ear is blocked untill now and getting worse. I started Aromasin last week, after 4 month break. No SE for the beginning.
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fromMontreal, thanks for sharing your info. My symptoms were off and on (currently off), and it's encouraging to hear that if there's a link to tamox, if will go away when you stop taking the drug (I worry about drugs causing permanent damage). I can't take an AI but glad the new drug is working for you.
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I had it badly enough on tamoxifen that I would fall over in the garden because I could not tell which way was up if I bent over at all. It didn't have anything to do with a cold or an ear infection for me. Because I am HER2 positive and HER2 can tend to go to the brain I had a brain MRI, which was entirely fine. I lowered my tamoxifen dose and then stopped it after 1 3/4 years. My doctors said I was "probably" postmenopausal by then anyhow.
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I've had several attacks of vertigo over my lifetime and they can be very debilitating. I found a way to keep them in check though. I had some leftover patches from my cruise and when I recently had an attack, I took a patch and cut it in quarters and put one on the back of my ear. Within an hour, the dizziness was under control. I left it on for a couple of days and then I was fine. I think it works on the same premise with the inner ear as it does to cure the sea sickness. I like it better than the antivert that I was given to take, because that makes me a zombie.
Hope this helps. Just call your doc and tell him you're going on a cruise and need some patches to help with sea sickness, otherwise they will try to prescribe antivert for the vertigo.
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The dizziness thing-If it's going to last the entire 5 years I'm on the drug, can I take Antivert or use Scopalamine patches for that long???? Sometimes it's not too bad & I think I can live with it & other times the walls move like during an earthquake. My MOs solution was to lower my dose to 10mg, still dizzy.....
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coraleliz: I would ask my MO about it. Shouldn't have to put up with those kind of SE's.
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I was diagnosed with several vestibular disorders many years ago. The first doc told me it was "Atypical Meniere's Disease". Meniere's disease has four distinct symptoms:
1) rotary vertigo
2) fluctuating hearing loss
3) aural (ear) fullness
4) tinnitus ( noises inside your head that do not come from the outside)
Well, over the years, and thanks to a wonderful Internet support forum, I learned I had four distinct different diagnoses.
A little clarification - your ear has three parts: the outer ear, which you can see; the middle ear, which is where most infections (such as swimmers ear) occur; and the inner ear, which is located somewhere behind your eyes.
The inner ear is responsible for most symptoms of dizziness and vertigo.
Vertigo is the sensation that things are moving when they aren't. Think of yourself in the middle of a skating rink standing still, and all the skaters are moving around and around you. This is what it feels like when the room spins.
Dizziness has more to do with feeling off-balance. It may feel like you are walking underwater, or maybe walking on sofa cushions. The world is floaty around you.
The bad news is that dizziness/vertigo can come from hundreds of different causes, including numerous medications.
Meclizine is great for stopping the nausea/vomiting that comes with vertigo, but it won't actually stop a vertigo attack once it's started. And if you take Meclizine on a regular basis, eventually the effectiveness will wear off.
There is good research that Valium is helpful in cases of Mal de Debarquement Syndrome, or Debarkment Syndrome, where you've been in a moving vehicle (or on a boat) for a while, and when you get back to standing still, your brain can't accommodate the feeling and makes you feel like you're still moving. Valium can also alleviate vertigo from other causes, but remember - many drugs have dizziness as a side effect.
Environmental and food allergies can cause dizziness, and severe allergies can cause vertigo attacks. Problems with neck alignment, and migraines can cause vertigo. ("Migraine" is a brain condition, not just a headache. Many migraines are silent.)
The best thing to do is keep a dizziness diary. Log in the exact time, the exact feelings you are having, and what did you do before you got dizzy.
An ENT is the specialist you would see for chronic or repetitive dizziness or vertigo, and it's totally worth it to see what's going on.
If it's a side effect from the drugs, then a search to find an alternative is in order.
And if you do have chronic symptoms from other causes, then Vestibular Rehabilitation can be very worthwhile.
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I too am experiencing dizziness/lightheadedness with tamoxifen. I was told to take 40mg ed but I began to get dizzy spells so I stopped. I'm about 4-5 weeks off and I am still experiencing the dizziness every day. I was wondering if I should try to take it at a lower dose (say 10-20 mg ed) to help solve the problem. That do you guys think? Is there any other cure for these episodes? I had a check up with my dr and everything was normal such as ears eyes etc. Any help is greatly appreciated!
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cwiredm, sorry you're going through this even after stopping tamox. My understanding is that it takes six weeks to fully flush from your system. Since you're so close, I wonder if it would make sense to wait the full six weeks? BTW, I thought 20 mg was the standard dose, not 40 mg. Some members on this board have dropped down the 10 mg to reduce their side effects. If the dizziness is not due to tamox, I'm not sure what you should do, since your ears and eyes checked out.
(in my case, the urgent care doc saw some minor blockage in one ear; I have a history of ear blockage but never dizziness. I took Guaifenesin (the ingredient in Robatussin) which I've taken before for blocked ears. It seemed to help; I have no symptoms now but it was periodic for about a month and the whole thing was truly bizarre. Not sure if this helps but good luck.)
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cwired: Try using a quarter of a seasick patch on the back of your ear for a few days and see if that settles it down. Sometimes I get vertigo and I do that. It works.
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ditto what peggy said. Quetion your MO about why you are on 40mg. What I've read about Tamoxifen dosing is that 40mg was found to be no more effective than 20mg. 10mg is not well studied. I experienced(still experiencing) dizziness. Sometimes the walls would move or I thought maybe I was in an earthquake or afraid to drive. I had my dosage reduced to 10mg but have since resumed the 20mg dose. Things that make my dizziness worse are 1)any alcohol cunsumption( 1/2 a beer, few sips of wine.....) & 2) being overly tired. Tried to blame it on dehydration or being hungry but it just didn't fit. I'm not sure I'll be able to make it 5years but I haven't given up. Most days the dizziness is like being "a little drunk" & manageable. I'm glad the walls quit moving.
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