Vertigo and brain mets

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jazziD
jazziD Member Posts: 44
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned
Vertigo and brain mets
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  • jazziD
    jazziD Member Posts: 44
    edited October 2009

    Hi All,

    I haven't been here in awhile... I was diagnosed in 2006 and this August/2009 made 3 years... however, this month I had 2 episodes of vertigo, out of the blue... earlier this month as I was getting out of bed, I had to lie back down the room was spinning so bad...  after about no more than 10 seconds I was able to get up.... then on Oct. 14th, I had been on the pc for about 5 hours, and all of a sudden, it felt like my ears stopped up and although I was sitting, it felt like the room was spinning and I felt as if I would fall out of the chair... I closed my eyes...  again it didn't last any longer than 10 seconds...  

    I saw my pcp today, she specializes in BC and is very thorough, so Friday, October 23 I will have a brain scan... she wanted to help me feel better by saying that vertigo is pretty common, especially in women and that there are a lot of causes, some of which I do have, such as nose congestion, etc., but my question is, has anyone experienced vertigo and been diagnosed or not diagnosed with brain mets?... needless to say, I am really scared because I don't want to become an invalid and not be able to take care of myself... I work full-time and I have a 19 year old son who just started college... he started the insulin pump this week , so there is a lot going on right now... any feedback would be greatly appreciated...  Thanks for listening... ~ Dee ~

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hi Jazz,  I was surfing around the boards and saw your post.  I get vertigo every now and then when I wake up in the morning or if I lie down.  It's as if the whole room is spinning.  But I don't think I have Brain mets.  At least I don't think I do.  Sometimes you can get that real dizzy feeling from an inner ear issue.  I know how you feel about being scared.  I get scared too when I get the vertigo because I always think the worst. Like a stroke, which I had 5 years ago.  I had a massive brain bleed and was in a coma for 3 days, but came out fine with no deficits at all.  Now every time I get vertigo I always wonder if my brain is ok, but it's usually because of my inner ear.  (((((Hugs)))))

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2009

    Hi Jazzi :)  I've had vertigo off and on since I was 18, or about 34 years.  And as far as I know, I still dont' have brain mets.  I'm hoping it's just your ears, that's pretty common :)

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  • GracieM2007
    GracieM2007 Member Posts: 1,564
    edited October 2009

    Hi Jazzi :)  I've had vertigo off and on since I was 18, or about 34 years.  And as far as I know, I still dont' have brain mets.  I'm hoping it's just your ears, that's pretty common :)

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  • jazziD
    jazziD Member Posts: 44
    edited October 2009

    ... although I am ER-, I am PR+ and I am on Arimidex and have been for over a year now... I started out on Tamoxiphen until my hysterectomy in 2007... 

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  • DianaT
    DianaT Member Posts: 532
    edited October 2009

    I had a brain met and didn't have vertigo at all...

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  • billiegirl
    billiegirl Member Posts: 85
    edited October 2009
    A lot of things can cause vertigo. Low Blood pressure, anemia, an inner ear infection. I Had stage III IDC with tons of positive nodes in 2004, so 18 months later, when I developed severe vertigo...I was sure it was brain mets. Had a CT scan of head = ALL CLEAR. Turned out it was an inner ear CRYSTAL that was out of place. They sent me to physical therapy for what is called an EPLY Manuver. One visit, and I was good as new. Too bad I worried about brain mets for 6 months before I had that done! (PS: oddly, I had gone with a friend for a reading by a alternative health/medical intuitive just to placate my friend. It was the intuiative that told me it was NOT Breast CA mets and about the ear crystal thing. I thought she was a litte "out there" but EVERYTHING she told me has turned out to be correct). When I asked my medical Dr if it could be an ear crystal problem she said that it was not probable. She thought I had menier's disease but she would send me to PT if I wanted to try that before starting treatment with meclazine. That was 3 years ago and still no more vertigo and no meclazine! Get it checked out, but try to not worry too much.
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  • kareylou
    kareylou Member Posts: 44
    edited October 2009

    Here is some reassurance: One week short of my five-year checkup, I woke up with ringing in my ears, accompanied by a feeling of pressure to the point of pain in the left ear. The ringing got louder and louder, becoming almost a roar. A couple of hours later, while discussing what to do with a friend on the phone, I completely lost hearing in my left ear. I totally freaked, as you might imagine. My primary care physician couldn't see me until the next week (!!) so I spent the money to go to the Urgent Care Center. I had such vertigo I fell on the way to the car. Then my friend freaked. Turns out I had a severe ear infection. It was cleared up very quickly by drops and antibiotics. I never will know what caused it. Strangely, the same thing happened on the other side a few days later, so I started putting the drops on that side too and it receded.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited October 2009

    Jazzi,

    This is all scary stuff and it is easy to think the worst.  I have brain mets and never had dizziness or any symptoms for that matter - not even a headache.  Also, just to give you a little reassurance about brain mets, many (myself included) of us with brain mets have them successfully treated.  I had two spots treated in August.  I went to work the next day and haven't missed a day of work since. 

    Many other things can cause dizziness including positional vertigo.  Your doctor will get to the bottom of what is going on.  Please keep us updated.  I will be sending clear scan thoughts your way!!  lisa

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  • Analemma
    Analemma Member Posts: 1,622
    edited October 2009

    Jazzi, I also have had three episodes of brain mets and never had much symptoms at all.  It would be unusual for this to come on so suddenly if it were mets.  More likely an inner ear issue.

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  • jazziD
    jazziD Member Posts: 44
    edited October 2009

    Hi ALL ~ 

    I had the scan yesterday at 6:00p and it went well... very noisy, but not uncomfortable...  now I am just waiting for the results...  I will keep you posted...

    I want to thank everyone for the information and support that you have given me, I really appreciate it..   (((HUGS))) ~ Dee ~

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited October 2009

    Hopefully, you got your results today and have good news!  Keep us updated :>  lisa

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  • jazziD
    jazziD Member Posts: 44
    edited November 2009

    ... It is Friday, October 30th and still no results... how long does it take?... I am trying not to worry about it!... Tonight my son and I are going to see Michael Jackson's movie, "This is it"... we will leave my job and go to dinner, the movie starts at 7:30... I am looking forward to not thinking about this...  Thanks for your support...as always, I will keep you posted...

    ...hopefully, ~ Dee ~

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited October 2009

    Dee - You need to call your onc for the results - I always get mine the very next day.  Your results probably got lost in the shuffle :>  I always say no news is probably good news!  I have noticed when I get an immediate call, it's usually not good.  When I have to call and chase down the results they are typically clear.  Keep us updated!   lisa

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  • jazziD
    jazziD Member Posts: 44
    edited November 2009

    ...I just wanted to let everyone know that my scans were clear...Laughing... I decided to call my doctor like Chainsawz aka Lisa, suggested and left a message with my doctor today... She called me just as I was leaving work... I asked her what she thought caused the vertigo and she said "I don't know, but we do know that it wasn't your breast cancer that caused it!"...I am so relieved...

    Thanks everyone for your prayers and support, you really helped me keep it together...   now I am going to bed... I see my plastic surgeon tomorrow and will tell him that I have definitely decided to have a bi-lateral mastectomy... hopefully I can have the surgery soon...  Have a nice night all...

    (((HUGS))) ~ Dee ~

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2009

     I'm so happy Dee that your scan was clear, yay! Smile I suffered with vertigo (before my bc dx) and like Billiegirl it turned out to be a loose crystal in my inner-ear, which is very common my ENT told me, especially as you get older. Here's a link explaining the condition (it's called BPPV):

    http://www.dizziness-and-balance.com/disorders/bppv/bppv.html 

    The interesting question he asked me was "Did you ever suffer whiplash?" and immediately I knew what caused my problem - it was riding roller-coasters! I was the only 50 year old women standing in the front of the line for ALL the roller-coasters my kids ride! The old wooden coasters really did a number knocking my head about...........so I had to give that up forever, too bad! Shortly afterwards I was shoved onto the BC roller-coaster, so that made up for it I would say! My ENT performed the Epley Maneuver on me and I was immediately "cured".........here's a link showing how you can perform the Epley Maneuver yourself before getting out of bed in the morning, it has really solved my vertigo problem:

    http://www.youtube.com/watch?v=pa6t-Bpg494

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  • jazziD
    jazziD Member Posts: 44
    edited November 2009

    .. Thanks for that information, I will check it out...  Have a nice evening...  Wink

     ~ Dee ~

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    Good news Dee!  lisa

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  • cbm
    cbm Member Posts: 475
    edited November 2009

    I was about halfway through AC when I discovered a staple the surgeon missed and I went back to have it removed.  When I got up from the table the room was spinning and when I left I wasn't sure I should drive, but I did, and the motion stopped.  Panicked, sure it was something bad (oddly, not mets), I called my Ear Nose and Throat doc, who got me in.  And sent me to the Balance Institute, where they confirmed her diagnosis of Benign Paroxysmal Positional Vertigo, or BPPV, which is fairly common in people who spend a lot of time in bed.

    As it was described to me, your ears have these little ball bearing type things that rest in gel and need to stay in the general vicinty of their home.  They help you gimbal yourself, it sort of sounds like, if you are a boater you know what I mean.  If they get loose, you feel like the room is spinning, or you are spinning.

    The treatment for this is for the audiology doctor to take you firmly in both hands and move you (rather violently) in the direction they have determined will send the little ball bearings back to where they belong.  I am not kidding.  It was wild.

    It happened to me twice, or maybe three times before I figured out that I had to move around much more than I was.  My reclining hours had to be reduced, even if I only stood or sat upright to read, or did some exercises.  After I was done with A/C and went on to Taxol I was more active and it didn't happen again. 

    It's oddly not well known, but it is real, and it is scary and rather violent and it does make you think you have something very very wrong.  Driving seems to help becasue it bounces you around a little, but you aren't supposed to drive if you are having an episode. 

    I hope this helps, sorry I didn't see the thread earlier. 

    Cathy 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited November 2009

    I also had positional vertigo (BPPV). It's awful!  I would get dizzy while laying down or if I turned my head too fast.  I did a google search and found some exercises you can do at home.  I did them for just a day and got relief - may save you a trip to the doctor and a copay :>  lisa  

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2009
    Cbm - driving did NOT make my vertigo better - it became worse!  Frown I ended up at the ENT because I feared I'd wreck my car! Also - I did plenty of exercise prior to my diagnosis of BBPV - the crytals in my ear came lose not because I was laying around in bed but more likely because of the whiplash effect of roller-coasters and also from aging. My ENT said BBPV is very common as we get older, especially in post-menopausal women. The Epley maneuver is not violent or wild.........it DID make me nauseous (because the ENT moved me from a sitting position back into a laying-down position which made the room spin)...........but it nearly immediately healed me! I wouldn't have been able to go to the dentist or beauty-parlor if my ENT didn't show me how to perform the Epley maneuver myself at home in bed. I really recommend it!
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  • pennylane
    pennylane Member Posts: 177
    edited November 2009

    This is so informative.  I have suffered from positional vertigo off and on for years and it seems like this past summer every other middle-aged woman I knew had a similar problem.  I tried that Eply maneuver in bed by myself and it made me so very dizzy so I would be scared to do it again...I found the vertigo went away with the cooler weather.  I am very interested in the procedure that CBM had done...Cathy, if you are reading...can you tell me if this rough treatment by the DR made you more dizzy at the time?  Or can anyone else tell me if the therapies they tried were difficult...by that I mean causing extreme vertigo before the cure!   Thanks so much....

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  • cbm
    cbm Member Posts: 475
    edited November 2009

    Hi.  I'm sorry, I didn't mean to imply that everyone who gets BPPV is bedridden or doesn't exercise, only that I was told it is common in folks who are--and then get up suddenly, and that was me.  And exercising more helped me after I was Epley maneuvered.  I was told that was probably the origin of my episodes--I had been active and athletic then after diagnosis reclined a lot more than I had before bc.  I try hard to only talk about my own experience and not get beyond that and I obviously missed the mark.  There are lots of circumstances that produce BPPV and other kinds of vertigo.

    I could not do the Epley or the exercises myself, although my ENT gave me a sheet with the description.  When I went to the balance doctors they told me not to try to do them myself.  I would not have been able to do what they did in the office. 

    They did tell me not to drive and after I was told not to, I didn't drive myself.  But my husband would put me in the car to get me to the doctor, and within a few minutes in the car I'd be fine.  My episodes were all intermittent; only one or two lasted any length of time.  The whole experience with BPPV lasted about six weeks.  So I am by no means knowledgeable!

    Warmest;

    Cathy

    Edited to add--yes, what they did in the office made me more dizzy for a few minutes.  They would not treat if I didn't have someone to drive me home.  Hope this helps.

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  • fortunate1
    fortunate1 Member Posts: 644
    edited November 2009

    I find so much on these threads, it's amazing. I have had the vertigo problem for years, very intermittently, always in the morning. I eventually read about the Eply maneuver, it helped. Doctors brushed me off. 

    So I woke up dizzy yesterday, and here you all are. What a crazy world. 

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  • jazziD
    jazziD Member Posts: 44
    edited November 2009
    ... and now we can add that just because you have bc and you have symptoms of vertigo, out of the blue, it doesn't mean that the cancer has spread to your brain Laughing...  but as always you have to get things checked out..  Thanks everyone for your support...  ~ Dee ~
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