checking out my vertigo and need prayers
 

I do not normally worry or get nervous until I have to or have a definitive reason to, however, I will admit I am very frightened over this vertigo I have been experiencing for several weeks now. I have an appointment with my ENT doctor on Monday and will also call my oncologist on Monday to discuss this with him. I know I probably should have called him first but tried not to panic. My internist first tried treating me with bonine which didn't do too much and then referred me to my ENT. I know the nature of Her2 and it's high rate of recurrence and metastasis but I didn't want to jump to the worst conclusion right away, but the more I think about it and experience it, (subtle as it is), the more I worry that it could be a sign of the worst, brain mets. I keep telling myself not to panic because I was stage 1, no node involvement and I had my year of herceptin but I am still very worried. Please say prayers for me. I promise, I will call the onc on Monday and will report back as soon as I know anything. Thank you sisters for your support.

Rina, I totally understand your fear...we've all been there. My upper back has been hurting and my breathing feels affected and I'm freaking out. So I totally understand. It's pretty normal for that panic to set in.

But seriously...there are so many causes for vertigo. I've had vertigo off and on for years. It happens when I lay on my left side or bend my head the wrong way, then everything spins. My ENT & primary both say it's just positional veritgo. But when we have this cancer cloud hanging over our head we natually think the worse.

I think you did the right thing by seeing an ENT first. I'm sure he will find the cause of your vertigo. Something is probably going on in your "inner ear". That has always been the case when I've had vertigo...even long before bc. I know its hard...but try not to worry...I will almost guarantee you that your ENT will get to the bottom of this. All you might need is an antibiotic. I was falling into the walls once...it was awful. I thought something was really wrong with me!!! But I just had a nasty infection and with a shot in the back side...and a "Z-Pack", I was good as gold. So take a deep breath and try to relax till Monday. (Even thought I know its easier said then done.) Hang in there.

Chelee

I know of someone who had the same symptoms. Her ENT did a procedure in which the fluids in her inner ear were manipulated. Problem solved. She was as scared as you are and is a BC survivor too.

Both my children and I suffer from various allergies. We get vertigo every now and then.

There are lots of other reasons for vertigo. You did all you could to prevent a recurrence and with your path stats it's highly unlikely to be brain mets.

Still, we worry. So I'm sending you calming, healing vibes.

Hang in there girl!

Hugs

Jacqueline

Rina
I know exactly how you feel, and I know the worry. I also had the same thing a few months ago, along with severe nausea and headaches...after a brain MRI, which is what they need to do to get a definative answer, I was diagnosed with benign positional vertigo...they did tell me that this is more prominent the older we get (gee thanks). You are in my prayers that this will be nothing...but get the brain MRI first, then after mets are ruled out, they can look for the cause.

Once again, thank you all for your encouragement and support. I feel a little better after reading all of your replies and am more hopeful that perhaps it is just positional vertigo. Years ago I had many problems with ear infections and had to have tubes put in several times but once I started taking an allergy pill on a regular basis my ear infections stopped. Tomorrow can't come fast enough! Hugs to all for making me feel a bit more at ease. Thanks for your understanding as well....only another her2 bc survivor knows why we would worry about this.

Rina,

For peace of mind make sure you get that brain MRI Shelia was talking about. I was having headaches (more than usual), felling a little woozy, and walking a little lopsided at times. I played it up a bit with my onc because I was concerned. She immediately ordered an MRI and it came back just fine. I'm really glad I had it done, just to rule out anything bc related.

Good luck and let us know what you find out.

Rina,

I'm sorry you have to deal with this vertigo problem - but as others have said it could be many things. Have you been taking any new medications lately? Even something that would seem relatively inocuous - my oldest DD was on a drug for mild acne a few years ago, and about 4 - 6 weeks after starting to take it developed vertigo - really dizzy. We had her at neurologists, the dermatologist etc. - Finally our GP diagnosed her - a very rare side effect of that particular drug -but she had seen it in her practice a few times over the years with teenagers/young adults. As soon as my DD stopped taking that pill, the vertigo subsided (although it took awhile).
Could also just be a virus, like labrynthitis (inner ear virus that causes vertigo - my DH had this a few times, there is basically nothing you can do for it, it just has to pass).
Obviously you have to get this checked out, but I am just trying to give you other possible reasons why you could be experiencing this, other than brain mets.
Try to be positive, as others have said, with your path stats etc. it is so unlikely to be brain mets. But of course this is always our fear as BC, especially HER2+, survivors.
I am praying for you today -
xo Caya

I just have to say thank you very much to all you great women. If one of us ever is unsure, worried or upset there are always so many who are there to help in anyway they can. I am so appreciative and thankful for this forum and so fortunate to have it to turn too. I wish I had more time to devote to it but everyone is always in my prayers and I feel honored to be a part of this great support group. You have all made me feel more at ease with your replies and I will definitely be consulting with my onc about an MRI as well as see my ENT doc tomorrow. Will post again once I know anything definite. Thanks again.
xoxo,
Rina

Best of luck when you go to your Dr. I will be thinking
of you this week.
patb

Hi Rina,

I wanted to chime in too. Just wanting you to know that I pray that Monday comes quickly for you and that brain mets are ruled out PRONTO. I, too, suffer from occasional dizzy spells (as I call them). They have been going on for over a year now with no rhyme or reason for them. They will be gone for months and then reappear. Mine seem to be sinus related. I have never been to my onc. because of it or any other doctor HOWEVER, have thought of it on occasion. Everytime I think I should call the symptoms disappear for a while. So, I haven't.

I'm sure your dizziness too is related to something other than brain mets BUT I do understand the worry. Boy, do I. As I always say to people (just to be funny) I've had cancer in every part of my body in the past 3 years and so far I'm still doing well. Haha!

Love to you "sister" and prayers too.

Mary Jo

I too had a bout with vertigo...and was so sure that it was something fatal, I suffered with it for 2 months before finally going to the ER. I insisted on an MRI (and got one!). It turned out to be vertigo, plain and simple...and eventually cleared up. It is so true that we worry about every little pain...let us know how your appointment goes!

Rina,

I hope your doctor's appointment goes well.

Amelia

Rina, Just wanted you to know I am thinking about you. Let us know how your appt at the ENT went today. Hope you got some answers.

Chelee

Prayers
 

Rina:

I just wanted to post that my thoughts and prayers are definitely with you. I will pray that this is nothing. Please keep us posted!

Lisa

my sister recently had something very similar.. it was a virus which attacked her 8th cranial nerve.. causing hearling loss, vertigo, tinnitus, bad tinnitus.. the acute phase lasted about a month.. and after 3 different ENT specialists, she got a diagnosis she believed.. she did the meclizine, voltaren , stimuli exercises to reteach her brain to recalibrate her balance.. etc etc she missed a few weeks of work, could not drive, etc..

she is better now.. but has some permanent hearing loss.

run to live

Hey Girl
 

Hi Rina,
I had the same thing...I wonder if it is not somehow connected to the drain of Estrogen since we are taking AI's. I had a MRI of my brain and all was clear.
I think it is good to have just for a base line anyhow.
My dr. did say the following, that certain foods will interact...MSG being a big contributor (found in salad dressings) and even on fresh salads to maintian their fresh appeal....even some chemicals found in wine.
This could set off the vertigo...while I was at the BCS last Dec. I know it was from the salad! It was all I had eaten...a large plate of fresh salad with dressing.
Try to determine when you have the attacks, is after a dinner out, a glass of wine?...keep track.


I have been vertigo free for about 9 months now. It is important if you feel it coming on to take the medication
ASAP...much like our nauesa meds, once it gets control,
it is difficult to get out of the spiral.

All good wishes...to you.
Jean

Update on vertigo and Happy Thanksgiving to all....
 

Thank you for all your input, concern and suggestions. I saw the ENT dr on Monday and they did a hearing test and exam. In my left ear, which is the one I have a history of ear infections with many years ago, I have a very minimal loss of hearing. The doctor examined me and found some scar tissue in this ear due to the years of tubes I had placed. He believes I am most likely dealing with an inner ear problem but ordered an ENG test that will be done next week. If the findings are inconclusive after those tests, he said he would order an MRI. My onc is in agreement with this game plan for now. Last night I had my most severe bout with vertigo along with a killer headache, (almost felt like sinus headache), and some nausea as well, but this morning I feel fine.
Jean, just wanted to mention that I was er/pr negative so I am not on any aromatise inhibitors but thanks for thinking of that.
Will be out of town day after Thanksgiving for a week. Heading south for some much needed r & r and warmth, (we hope). Will check back as soon as I know anything more. Thanks again for your help and support. Wishing everyone a wonderful and warm Thanksgiving.

I get terrible vertigo with my allergies. Try not to worry, it may just be fluid in your ears. Mine got so bad once that just turning my head quickly made the room turn upside down. A little fluid in the ears/sinus passages can do crazy things.

Unfortunately there was no fluid in my ears according to my ENT doc, but you raised good points. Thank you.

Rina, I will add my name to the list of those who have had vertigo intermittently over the years. So let's hope that is all it turns out to be. Of course, once we have had cancer, everything seems more ominous .
Let me tell you about a recent incident I had. Was feeling some pressure in my skull and had an episode of double vision. My onc ordered a brain MRI. (Meanwhile I was seeing a doc for TMJ. He thought the "pressure" was muscular in nature and not a brain tumor.) The MRI was negative for tumor BUT the radiologist said I have "multiple small areas of infarction." So now I have been sent to a neurologist. HE said the radiologist mis-described the findings and things are normal for my age. No "little strokes" after all. I guess I am telling you this to point out that sometimes things are not at all what they seem. Even if someone is suggesting some reason for concern. Upon investigation it turns out okay. The anxiety, however, is excruciating.

Bonnie, your point is well taken. I am trying very hard to not worry and jump to any conclusions. I am keeping very busy so it is making this easier. Thanks for sharing your experience and I am glad you are okay.

Rina,

Your breast cancer was in similar size and same stage as mine when it was first diagnosed in 2003. I don't feel it's likely for you to have brain mets to cause the symptoms you are experiencing.

Let's wait for the follow-up of ENT and hope it will help the doctor figure out how to give you relief.

Rina,

Thanks for posting the update. I hope that further testing will give you definitive answers. Still could be a virus. A neighbour of mine had a vertigo virus for a few weeks before it finally faded and disappeared.

Please keep well, and let us know your test results.

all the best
caya

Hi Rina - before my dx of BC, I suffered a couple of bouts of vertigo. My ENT did a brain MRI and audiology tests - and called it Benign Paroxysmal Positional Vertigo. He was able to diagnose this by tilting the chair I was sitting in backwards and watching my eyes. Then he performed an Epley Maneuver - which made me so dizzy I became nauseous - but the next day, my vertigo was over! I was so happy because it was getting so bad that I couldn't drive! He told me many women get this problem after menopause - that there are crystals in the inner ear and they can get dislodged often through very slight whiplash. Here's an article in the New York Times Science Times describing the ear's vestibular system:

http://www.nytimes.com/2008/10/28/science/28angi.html

My first bout of vertigo had occured 2 years after I went through menopause. I was 51 but still enjoyed riding the big old wooden roller-coasters. It was hard to give that up - but at my age I finally recognized that "somethings gotta give". My doctor taught me how to do the Epley maneuver myself - I'm not as good as he is - but if I feel dizziness coming on, I try it before I even get out of bed in the morning. Here's a link showing pictures of the Epley manuever:

http://www.merck.com/pubs/mmanual_ha...es/fg20_1.html

and here's a video on YouTube showing the manuever:
http://www.youtube.com/watch?v=pa6t-Bpg494

I hope this information is helpful to you - and that your symptoms have nothing to do with BC.

Swimangel, thanks. We surely learn all manner of interesting things here!

Swimangel, thank you for your excellent information. I am willing to bet that I have Benign Paroxysmal Positional Vertigo because it usually happens when I lay down or bend down. Occasionally at other times. Doesn't happen all the time and sometimes so infrequent that I even second guess if it is real or my imagination. I am having an ENG test on Tuesday so I should know for sure soon. Thanks for your input and knowledge.

Kathy, Thanks for sharing the diagram and video of how to do that "Epley maneuver". I've been living with BPPV for a good 5 years now. I'm going to pick on my primary doctor for not bringing this to my attention. I've told him how much this really bothers me and affects my life. I even asked him if there was a way to get rid of it?

I'm going to try this maneuver myself and see if it works for me. If it works that would be great...I hate this vertigo.

And YES Rina...from what you just described...I will also bet this is exactly your problem. It makes the most sense to me. Seems to be more common then most people think too. Let us know how your ENG goes Tuesday. Maybe we can start are own "BPPV" group. lol ;)

Chelee

I had the same thing as Kathy, benign positional vertigo while on Herceptin. I had to go to the er and the doc there had me do all kinds of strange maneuvers with my head, but upon completion the vertigo seemed to go away. I also didn't have bouts of vertigo, mine was non stop. for 12 hrs until I went to the er.

Oh, and I was told the same thing regarding a hair, or crystal that broke loose in my ear and it was floating in the ear canal which was causing the vertigo.

Hope you feel better soon Rina.

Karen

Ent/pt
 

Rinaina, as I mentioned in another thread, it is a long shot but I did get complete relief from those symptoms after my ENT saw me and evaluated me and sent me to a physical therapist who does PT specifically for those symptoms. Mine was due to a past shoulder injury compounded by breast surgery on the same side, which was causing the neck muscle to tighten up in compensating for the weakened muscles, and was putting pressure on a neck nerve.

Best wishes,

A.A.

Hi -
I have not experienced this vertigo type symptom, but my step daughter had it. She was in her late 20's when it happened and went on for a while before she was sent by her audiologist to a specialist for that maneuver to reposition the inner ear crystals.

All has been well since then for her. They think hers may have been related to her bad TMJ that she finally also got treated for.

Yes, our bodies do all sorts of things and we have to keep the faith that these other problems will be unrelated to our cancer, as hard as THAT is!

Hope you get relief soon, Rinaina!

Oh boy Chelee...just what we all need, another support group for another ailment, LOL!!! This better subside soon so I don't need that! Thanks everyone for your feedback. I am feeling so much more at ease about this vertigo being nothing more then that positional vertigo ailment. I am sure after the ENG that is what they will find. Then I can get treated with those exercises and be done with this hopefully. I just love this forum because you can always get great support and valuable info. Thank you all for everything and will report back as soon as I know anything.

I am feeling quite relieved after my ENG test today. The audiologist was so excited to report to me that she definitely got some positive readings that points to benign positional vertigo that would respond most likely to physical therapy. Kathy, you hit it right on the head so thank you very much to you and everyone else. Of course the doctor has to verify the findings and it may be an additonal five days before that happens. I am leaving town Friday but will be in contact with his office during my vacation. Hey, maybe the change in scenery and climate will cure me! Stranger things have happened, right? Will post again once I know anything definitive but for now I am worry free...Yeah!
Wishing all my her2 sisters a very Happy Thanksgiving filled with love, peace and good health.
xoxo,
Rina

Sorry, Rina, for being late here, but at least I got here in time to hear the good news! I hope you have a wonderful warm Thanksgiving. Hey, hey, where ya goin'? Come on, tell us. We need to know. Where ya goin'?

I have been lurking on this thread for the last couple of days... as I have basically been bedridden with a sinus headache, dizziness and accompanying nausea, no fever. Went to the ENT yesterday and he believes it is inflammation in my middle/inner ear, but didn't completely rule out a viral or bacterial sinus infection. He tested me for positional vertigo, but didn't see that as a possibility. So, I came home with prednisone and antibiotic. The nausea is gone today, but I am weak, prefer to be horlzontal, my ear canals are hypersensitive to most sounds, and I can "hear my eye movements" - which is really weird. I get whooshes through my ear canals when I move my eyes to try and focus. It's so freaky... I think I lean toward virus or infection. My onc leans toward fluid behind my ear drum, allergies and sinus infection.

Sigh, I just want it to go away.

Brenda, I hope whatever it is, it leaves quickly. Sorry you are dealing with this. Hopefully it will clear up soon.
Bill, we are leaving frigid Chicago and heading south to sunny and warm West Palm Beach Florida for a week. Shoot, just thought of something...sure hope the flight doesn't play havoc with the vertigo. My ears always hurt on decents.

Rina
There is a woman that I met at chemo at Rush who is a Physical Therapist and treats BPV..seems she is in Bucktown or near the loop...i will try and get her name if you are interested. She has had alot of success, they did a special on her on Channel 7 news, and she is an Imerman Angel to boot and a breast cancer survivor.
Have fun on the trip...chew gum, it helps!

Thanks Sheila and I will take that info if you don't mind..but I may end up some where closer here. Have a wonderful Thanksgiving.

Rina I hope your vertigo ends soon - and you are smart to worry about the flight affecting your ears. To help with the air pressure (increases and decreases) you can buy ear plugs in CVS called "Ear Planes" - they are made specifically to reduce the stress to the ears while on a flight. I wear them for swimming - they are so comfortable and the only ear plugs that really fit and keep the water out. But truly they were invented for air travel.

No matter what the cause - vertigo is so extremely debiliating to our daily lives. I would hold on to the walls when walking - I felt like a drunken sailor - fortunately I only got nauseous that one time in the ENT's office. But while suffering from the vertigo (my bouts lasted for 3 months a piece, non stop) - I wasn't able to go to the dentist- tilting the seat back made the ceiling spin - nor could I go to the beauty parlor for the same reason. Driving became nearly impossible unless I held my head absolutely still and didn't make abrupt changes with my eyes. Laying down in bed and getting up again caused the world to spin. I learned to make accomodations, but was so happy when my ENT said he could "cure" me immediately with the Epley Maneuver - and I hope your vertigo will be cured soon too!

Kathy, you really had a bad case of vertigo. Mine isn't as debilitating as yours. I can go hours without an episode and then sometimes it happens one after another but certainly not all day. I have been able to function fairly normally most of the time. I do look forward to that maneuver though because I would love to get rid of it all together. Thanks for all your great info.